falling down is also a gift

benefits

2006-12-01T08:37:00.000-06:00

Why, hello old blog! I'm just sneaking over here to indulge my own piteous self-pity. Guess what? The entire town is covered in a blizzard! Every school in town is shut down, and many businesses, too. The university is closed, as well. Guess where my husband is? Yes, he is at his office at the university, having plowed through the snow in his trusty whatever-the-Mercury-version-of-a-Ford-Taurus-is. Tenure rocks. And, by the way, a few comments on my last post clued me in to the fact that some of you may not realize that I haven't actually dropped off the face of the internet. I'm just mainly updating the other blog, and keeping this one for sentimental purposes. And also for posting stuff that will be deleted upon full realization of how very pathetic this is.

go fish

2006-08-13T12:12:00.000-05:00

Frankie and I decided to play a game of Go Fish while Annika finished up her lunch today. You should know that "lunch" for Anni has become something of a 3-hour extravaganza, punctuated by frequent requests for me to come listen to her tummy (ear pressed all the way to belly is required) to see what it is "still hungry for." Meanwhile, Frankie will stuff 6 snowpeas in her mouth and wander away from the kitchen, evidently bored by the totally played-out concepts of "food" and "nutrition" and "survival." So between frazzled attempts to ensure Frankie doesn't go the way of the supermodel at age 2, and desperately trying to learn the language of The Stomach Gurgle (hint: The tummy talks about potato chips a lot. Evidently, the tummy doesn't believe in low-sodium diets.), I can get a bit, shall we say, exhausted during the lunch hour(s). Today Frankie meandered into the living room while Annika was still mowing the tops off her steamed broccoli florets with the single-mindedness of a proud member of A.I.C.E.. Almost casually, Frankie grabbed the box of Go Fish cards and upended it, so that cards scattered everywhere across the living room, which was already a total minefield of toys and magazines and books and all sorts of household crap. I had to grit my teeth to keep from screaming at the thoughtlessness of it. She didn't even seem interested in the cards, or even watching them fall. Just some light-duty mess-making. Hey, nobody gets hurt, right? There's probably a clean-up fairy for stuff like that, right? But the same headache that's kept me from picking up the place for the last 3 days (let's just say it's only been 3 days, 'kay?) meant I also didn't have the energy for letting loose with my exasperation. Instead I asked Frankie if throwing the cards on the floor was her way of saying she wanted to play Go Fish. Frankie went from being the disinterested purveyor of chaos to gathering and sorting cards with the professionalism of a Vegas dealer in about 2 seconds flat at that offer. Annika, meanwhile, had moved on to the rice on her plate, which apparently requires less concentration because she struck up a conversation with me. "Did I tell you about my weird dream last night, mama?" No, she had not. "Well, it was about this porcupine, who was a singing porcupine. And it was really strange because this porcupine was on a low-sodium diet, BUT he could eat anything he wanted!" Interesting. What a strange dream. "Yes and he was walking around and eating everything and singing at the same time." I probably should have seen where this was going, but I was distracted trying to make sure Frankie found all the cards. "He was singing this song that was like this:" she goes into her opera voice "Oh, fooooooooooooood! Oh, majestic stuuuuuuuuuufff!" She was playing the opera singer role to the hilt, arms flung out with a fake vibrato on the stretched-out notes. I looked over at her and saw rice spouting out of her mouth at the "ff" ending of "stuff." Of course, she was demonstrating to me what it looks like when a porcupine sings while eating. Only the knowledge that Jörg cleans the kitchen floors every night kept me from curling into the fetal position with my pounding head sheltered between my arms. Frankie had finished picking up the cards, so I dealt us each 5 cards to start playing. Annika continued on with her story of the singing porcupine (but only between bites, as I was now careful to caution her). I can't believe how well Frankie plays Go Fish. I don't mean that she actually plays well. I could have asked for the blue shark for the past 15 turns and when she finally draws it herself from the pond, it would never in a million years occur to her that, hmmmm, perhaps mama has the matching blue shark. All I mean is that she can correctly identify all the cards (which requires being able to distinguish between a flounder and an angelfish, a distinction that still trips me up sometimes) and she waits her turn and she hands over the right cards when asked. That's a lot to ask of a 2-year-old, right? "Do you have an orange pufferfish?" I asked. "No. Go fish." "Do you have a blue jellyfish?" Frankie looked at me hopefully. "Yes!" I handed it over. Frankie smiled and stuck it in her hand. I waited for her to lay down her match, but she looked over at me expectantly. "You need to lay down your match," I reminded her. "I don't have a match!" she protested. Figuring she had gotten confused, I looked at her hand. Sure enough, my blue jellyfish was the only one in her hand. I pulled out the blue jellyfish card. "Frankie, you're supposed to ask for the match to a card you already have, silly girl! Go ahead and take your turn again." Frankie's smile disappeared. "But I wanted the blue jellyfish! I like the blue jellyfish!" So, yes, I gave her back the blue jellyfish. And Frankie lost the game, which she celebrated by throwing up her arms and yelling, "I win second!" Annika interrupted her story of the porcupine (which went on for another 15 minutes or so and thank goodness that I know better than to transcribe the entire thing here -- it turned into a total Shrek rip-off about 8 minutes in anyway) just long enough to shake her head and say, "That doesn't make any sense!" But at the end of the day, you have to ask yourself, "Which of us really got the point of the game?"

a little kindness

2006-07-17T09:01:00.000-05:00

I just noticed recently that Julie at a little pregnant has designated Annika's transplant fund as the July beneficiary of her advertising revenue, which is very lovely. Andrea? Was that you? I'm figuring everyone in the world already reads Julie and Paul, but I thought I'd point out that the clicks on the sidebar advertising benefit Anni's COTA account this month. Donations are tax-deductible, as COTA is a 501(c)3 charity. Although I guess "two clicks" is not exactly something you can list on a tax form. And, of course, my favorite part of COTA, any donations beyond Annika's medical needs go to assist other children needing transplants.

Must you see the sun to know it warms you, Grasshopper?

2006-07-16T19:32:00.000-05:00

OK, so now I get the reason all my neighbors own gas mowers. I'm thinking that I sweated (sweat? swote?) off maybe 15 pounds today mowing the front lawn. The back yard will just have to remain all wild and untended until the heat breaks, because my little green reel mower loses much of its cuteness when viewed through eyes bleary and stinging from the drops of sunscreen-tinged sweat rolling down my forehead. I was wishing for a sweatband today for the first time in my life, and that's saying a lot because I made it through my entire teen-aged existence in the 80s with neither sweatband nor legwarmers. Our cat is endlessly fascinated when I go out to do yard work. He lolls about luxuriously on the window sill, stretched out to his considerably furry length, watching my every move through the window screen. I'm pretty sure I know what he's thinking. "Stupid, stupid humans." And coming from a cat who has run, in a panic, straight into a wall and attempted (repeatedly) to hide himself behind a toilet, that's saying a lot. Here I am, after mowing the lawn today (click to go bigger, if you dare): a) here you see my super-ultra-mega-sunscreen melting off my face b) here you see splotchy, smudgy marks where my sunglasses rubbed a lovely raw patch c) here you see me mouth-breathing, like an overweight Saint Bernard panting in the Sahara d) here you see my crazed, blood-shot eyes (Why, no! I haven't ever had an internet stalker! Go figure. One of life's great mysteries, I guess.) (edited to add: I just checked my referrer logs and discovered with wondrous serendipity that I am the #2 result on the WebMD search "underarm stink." Just out of curiosity, I checked Google. #4.)

who lives in a pineapple under the sea?

2006-07-12T08:19:00.000-05:00

We don't use our air conditioner much in the summer, which might explain why every October we go on a treasure hunt collecting all the toys and stray socks that have taken up permanent residence under the sofa. I'm just too meltingly hot to go belly down on the floor, reaching for that toy that nobody has really missed, anyway, not to mention all those annoying magazine subscription cards that come fluttering out of The New Yorker 3 at a time with every issue. But as everyone is fond of saying around here, "It's not the heat. It's the humidity." About this time every summer, the house begins to take on a distinctly sponge-like atmosphere. This morning found me drinking my morning iced coffee (because I cannot take my caffeine hot at this point) and trying to finish up Life of Pi for book club when I heard Annika grunting. Looking up I saw her pounding her fist on the puzzle she'd been working on. It didn't take long for her to dissolve into a weeping fit of frustration, "It's not working! It just isn't working out right now!" Here is what I saw when I came to her rescue: Yes, our house is so humid that her puzzles have gone funky. So I sent her downstairs to the basement to gather up a new game, which led to more cries of frustration when she couldn't get the door to the playroom open. I had to go downstairs myself and kick the wetly swollen door open, a la Charlie's Angels. Time to turn on the AC? Or should we wait until our house absorbs enough moisture to expand our square footage by another 9 feet or so?

for one thing, I can never get my feet to match up

2006-07-11T11:18:00.000-05:00

I suppose it was insanity to think I could maintain two different blogs. It appears all my time lately goes into The Other Blog. One problem I have is that I cannot simply post and let those puppies go. I have to go back and re-edit and add links and fix punctuation and do all those things that you're not supposed to do when you're blogging, because that kind of freedom from editorial obsession is exactly what makes blogging so great. So even when I'm just writing 5 posts per week, it turns out that they end up sucking up all sorts of time because I keep going back to the things, even long past the time anyone's likely to read them. Does anyone else do this? Surely I'm not alone in my crippling inability to leave well enough alone? I've always heard that writing frequent posts is a tried-and-true way to up your readership numbers; advice I blithely ignored on the theory that writing more frequently wouldn't be helpful if I had to resort to anecdotes about toenail clipping and other such fascinating activities in an effort to be more prolific. I mean, some people could make toenail clipping into some hilarious parable illustrating the Meaning of Life, but I'm pretty sure I'd just end up writing about, well, toenail clippings. And maybe also about how sad toenail clipping really is. But now either the blogosphere is just getting too big to keep up with frequent posters, or my Toenail Theory was spot on, because I am apparently getting fewer readers now that I post all the time. So maybe I should just roll this blog up into the ClubMom Blog Extravaganza? Would it make more sense just to have the one blog? Make the situation less complicated? Ease my guilt when I see that my last post was nearly a month ago, and really only contained a link to the other blog? So, anyway, here's something: we were finally sent a copy of the contract that the re-insurer has with our insurance company. We had requested a copy around the time of the whole insurance fiasco, just to convince ourselves that there really was some justification in black-and-white for our impending screwing. Not only was there no mention of using the date billed, rather than date of service, to determine our annual maximum, there was no mention of this "annual maximum" business at all. If you remember, it was the annual maximum (as opposed to a lifetime maximum) that left us ineligible for most government help programs (since she was still technically "insured," even though our insurance wouldn't pay). There is, however, an annual maximum clause listed in our contract with the insurance company (as opposed to the re-insurer). Did I mention that the annual maximum idea was new in the past year to our healthcare plan? Proposed after Annika entered the pool of insurees? (Things that make you go "hmmmmmm.") And even more you wonder what happens to people who don't have the resources to fight these decisions. We were extremely lucky that we had powerful people at Jörg's workplace pushing for our situation to be remedied. It's good to be out of the emergency situation, both with Anni's health and the insurance. It's too bad neither one of them has been fixed permanently. I can't believe that Annika could still slip between the cracks of our insurance system with just one PICU stay at the wrong time of the calendar year. And, of course, I still can't believe that Annika really needs to be transplanted, again. I really hope that the next presidential campaign includes lots of debate over the healthcare situation in this country. Then I would at least have something to blog indignantly about over in this space.

iMovie is a dangerous, dangerous thing

2006-06-14T12:19:00.000-05:00

For those of you begging for more of those a-DOR-able home videos, I've posted another over at The Wait and the Wonder.

goal!

2006-06-09T12:04:00.000-05:00

If the video does not display properly
click here to upgrade to Flash 8 World Cup mania has hit the Tiede household. This is the only sporting event that Jörg insists upon watching, and it's only every 4 years, so I'll roll with it. Training of the younger generation has begun. Video to prove it.

in the chapel

2006-06-02T09:37:00.000-05:00

Frankie, in the chapel in Bloomington, Indiana where Jörg and I were married. (Click to go bigger)

Dear Readers of this Blog

2006-06-02T09:06:00.000-05:00

(should there be any left), Everything is OK. Well, Annika's labs still show that her liver is failing. She's started a new drug to try and lower her ammonia levels, which were screwing with her little brain and turning her into an incredibly sleepy and totally drunk-sounding almost kindergartner. Today she's getting an intramuscular vitamin K injection to try and lower her bleed times. We took a last-minute trip to Indiana on Wednesday, showing the girls the little chapel on the campus of IU where we got married, then heading up to Indianapolis to see the zoo and loll about in a hotel pool. I got all weepy during the dolphin show, where we were surrounded by hundreds of children all breathless with delight while Annika wiggled around on my lap, unable to get comfortable, and clearly not enjoying herself. "Let's just get out of here," she whispered into my ear. Mainly, I'm just wiped out trying to keep up with my required 5 posts a week over at my new blog. Over there, it's clear that the point of the job is to get as many clicks as possible and there has been some discussion on ways to increase readership on the private discussion board for the other ClubMom bloggers. Some of the suggestions have been things like "doing memes" (or "not doing memes," the field is divided on that issue) and writing "short posts with breezy content." I think I am going to have to take up the short posts idea, just because, well, they take less time. But I'm still trying to think about "breezy." When I sent in my application, I pointed out that my topic was probably not the kind of stuff they were looking for. It's not that I'm more "serious" or whatever. It's just that I'm not sure it's the kind of thing moms looking for an escape and a fun read are going to gravitate towards. It's probably not the kind of thing that inspires readers to click on advertising, unless it's advertising for the latest, greatest anti-depressant. I did just post a shorter entry about Frankie and an M&M disaster, but really it has nothing to do with my assigned topic "Children's Health and Diseases." (BREEZY!!!!) Anyway, so thanks for asking, Tina.

all things

2006-05-20T23:57:00.000-05:00

Hepburn, well-loved kitty 1990-2006 Good-bye

6 long months

2006-05-17T23:26:00.000-05:00

I won't take time to do a long post since tomorrow morning is Annika's train trip with her preschool class. Of course I'm going along, and Annika's super-nice preschool teacher is bringing a fold-up wheelchair for Annika to use for the long walk from the train station to the park. She's been looking forward to this trip for a while, although I haven't been talking it up, just in case she had to be in Chicago instead. So I should get off to bed and get a sufficient amount of sleep to avoid falling off a train platform somewhere. Annika's lab results last week were just awful. I plugged her lab numbers into the PELD (Pediatric End-Stage Liver Disease) calculator over at the UNOS (United Network for Organ Sharing) website. The PELD score determines where kids under the age of 12 are on the waiting list, with the sickest kids having priority (the higher your PELD score, the higher your estimated risk of mortality at 3 months). The average PELD score at time of transplant is about 18. A PELD score higher than 30 usually means that your liver is pretty well FUBAR (since it's all about acronyms in this paragraph). Annika's PELD was 23. I did all sorts of googling to try to figure what, exactly, this meant for her. Mainly I was trying to find out the big answer: if the PELD score is based on the estimate of mortality at 3 months, then what's the estimate associated with a score of 23? Especially given that her surgeon still wants 6 more months before he feels she has a reasonable chance of surviving another transplant? I didn't find that answer, exactly, but that phrase, "3-month risk of mortality" kept popping up on every document I found, and it was just driving me batty. She needs 6 months, and I don't know how much of a stretch that is going to be. I do know that 23 is not like a panic PELD score, but (I've written and erased the ending to this sentence 3 times now, so I'll just go with...) but I don't like the trend and I don't like this situation. The good news is that we repeated her labs this week, after she'd been on her new antibiotic regimen for 5 days and they looked better. Not champagne-popping better, but enough to get me to lay off Google for a bit. Also in good news is that it turns out that Annika is (almost) in the most resilient age group, according to the numbers. Of all age groups, 6-10 year old children look to have the lowest mortality rate associated with transplant. I'm throwing this up on this blog, because I figure this is the place where the squicky medical details live. I'm still trying to figure out how to work the new blog. There are some high-powered bloggers over there, and I'm working out how, exactly, I fit in.

OK, I won't do this all the time, I promise

2006-05-16T07:43:00.000-05:00

Yup, I watched Grey's Anatomy last night, and I wrote about it over at my new blog. Since my contract requires me to write over there at least 5 times per week, I won't always announce it like this. Lest I drive everyone insane with my constant declarations of "I wrote something! Hooray!" But I'm still getting used to my new, contractually obligated productivity. So, "I wrote something! Hooray!" (As a side note, in the post over at ClubMom, I reference my own blog several times. I know some people feel that this is a totally self-absorbed thing to do. I think it is just the opposite. Providing the links to stuff you've written before, when you're alluding to it in the current post, means that you don't just assume that everyone has already read every single word you've written and has inscribed your thoughts so deeply in their brains that they don't need a little reminder of what in the hell you are talking about.)

and a little health update

2006-05-14T00:08:00.000-05:00

Annika's ascites is worsening, and her albumin has dropped pretty low (1.7 for the liver families out there who appreciate specific lab values). Anni's Physical Therapist noted in this week's session that she was again out of breath after just standing for 5 minutes, probably due to the increased fluid in her abdomen. So Annika's GI called and said that we should plan on bringing her back to Chicago for a few days for a "tune-up": I.V. albumin with a lasix chaser until the ascites is back under control. They will also insert a needle into her belly to draw off some of the fluid to check for infection (in response to the mystery fever of last week). And, yes, they completely numb the area before the belly tap, so it's not a painful procedure. All in all, Annika is looking forward to checking in with her favorite Chicago doctors and nurses. She's already started piling things by the door that she wants to take with her. Jörg, the man who believes in packing weeks in advance of a trip, is so proud of her foresight.

blogging for dollars

2006-05-13T23:42:00.000-05:00

I never meant to be a full-time stay-at-homer. When Jörg and I were discussing our child-rearing plans, we agreed that I would stay home most of the time until the youngest was 2-years-old. We planned on 2 kids, 2 years apart, so that would be a grand total of 4 years at home. And even then I planned on working part-time. I guess we really didn't know how hard it is to stick to plans once you have kids, and, of course, we never bargained for liver disease when we were laying out our familial blueprints. This past week Newsweek reported that salary.com estimated a mom's salary, if she were to be paid, to be in the 6-figures. Here's a Salary Wizard they put together for mothers to estimate their "salary" based upon number of hours spent doing certain jobs (one would suppose that fathers could use the same tool, inserting their own number of hours spent on household tasks). Of course, this is all a bit giggle-inducing, in a sort of crazy, what-have-you-been-smoking kind of way. Yes, I suppose that we do need to be reminded that parenting is hard, unpaid work and we all should be exceedingly grateful for all the sacrifices our parents made in raising us. (Mom, I will always remember cleaning Saturdays and how you would tune in some music on that beige, plastic radio with the pink fingernail polish mark over the am frequency that announced school closings. My job was cleaning the bathroom, and the smell of Lysol tub-and-tile cleaner still makes me think of family. You even made the chores fun. But I bet there were lots of other ways you would have rather spent your weekends.) But I never expected that I would be paid a significant salary to care for my own kids. A little more financial security for mothers would be helpful, but reports like these don't really go so far in coming up with realistic, implementable ways to offset the financial risks of motherhood. When I was in the hospital with Annika last January, I read this article in the Scientific American on the neurological benefits of becoming a mother. The question, of course, being, why would you have kids when it's such risky business? My favorite study cited in this article (you have to pay to read it in full), was one in which the female rats could press a button and a cute, tiny, pink little baby rat would roll down a chute to the female rat. In this study, the rats would just keep pressing the button until they were knee-deep in mewling, blind little baby rats. Oh, the maternal joy! The study concluded that there must be some innate reward mechanism (the release of a hormone) in females (well, female rats, anyway) associated with surrounding ourselves with those darned irresistible, helpless beings. One would have to surmise, though, that the fact that mama rats do not have to change diapers or listen to the teeth-grittingly repetitive Map Song from Dora the Explorer might make extrapolating those results to humans somewhat difficult. And perhaps the scientists underestimated the female rats' sense of humor as motivatation for those repeated button-pushings: how incredibly funny must it have been to watch those hairless little balls of baby rat rolling down the chute at the press of a button? As rewarding as motherhood has been for me, I confess I still read the local help-wanted section. Teaching, which once seemed perfect since it allowed me to set a complementary schedule with Jörg's classes so the girls didn't need daycare, doesn't really work when you know that you will likely have to take long periods of time off to stay in the hospital with your child. The university system doesn't provide a network of substitute teachers to step in and make sure that your students get to finish the class they've paid for, and may need in order to graduate. So I've been mainly out of work. But then I got this email, telling me that ClubMom was looking to hire bloggers, and actually pay them for writing. After agonizing for several weeks about whether or not this was a good idea, I decided to apply. And I got the job. So now I have this new blog over at ClubMom. I'm still deciding how I'm going to run it. I'm still shocked to go over there and see Annika's face surrounded by a bunch of advertisements. In fact, the first time I loaded up the new page that ClubMom provided for me, the ad at the top featured a kid, holding his stomach and grimacing, with the headline, "Is it really just a stomachache?" The ad, unfortunately, was animated, and there was something like an explosion in this kid's stomach before the relief of the advertised drug soothed all the tummy troubles. I thought to myself, "Oh, God. This is never going to work. How did they know how medically paranoid I am? I haven't even posted anything yet!" But when I reloaded the page, the ad was safely replaced by a Sony ad. And I like Sony. Sony is an enjoyable part of my life. I can live with Sony ads. Thus, I am now a corporate blogger. I am getting paid to write a blog. It seems weird and a little incredible, but certainly worth a try. I gather that my continued employment is contingent upon my readership, so go on over there and read. It's like you're paying my exorbitant motherhood salary just by clicking on over there! So, without further ado, here is the link: The Wait and the Wonder, my new blog at ClubMom. You can also join ClubMom and get in on their new MomNetwork, a MySpace concept aimed at mothers, which seems kind of neat. My contract says that I have to post at least 5 times per week, so I guess this means that I'll have to write a lot more than I do currently. Consider this an official plea to send me links to interesting articles or suggestions for topics. My blog is listed under the category of "children's health," so I'd love it if you'd email me when you come across something in this general area. Here's hoping that getting paid for doing something I already do actually works out, and that my salary doesn't come in the form of imaginary "motherhood dollars." And thanks for your clicks.

words are overrated

2006-05-09T23:34:00.000-05:00

It's been a week. Another week. My grandfather died last Thursday. He was 93 and ready to go, so there's not so much mourning exactly. But there's always sadness. I didn't spend much time with my grandparents as a child, and I didn't have the same kind of relationship with them that Annika and Frankie have with their grandparents: long phone calls with an only halfway understandable 2-year-old, frequent visits, and hand-embellished cards posted halfway across the world. My grandpa was the silent type. I can barely remember what his voice sounded like, I heard it so infrequently. My grandma, on the other hand, has never been short of words, but expressions of affection did not often pass her lips, either. And I don't mean that to sound critical. My grandparents were good and hard working people, farming in western Kansas until they were too tired to do that anymore, and then realizing that farming didn't come with much of a retirement plan. So my grandpa took a job as a custodian and they moved to a little town in Kansas with the saddest zoo I've ever seen, a town where half the population could be found in the Dairy Queen on a Saturday night. They loved their children and their grandchildren and their many great-grandchildren fiercely, and perhaps it's only my memory that has forgotten the actual words being spoken. I spent a few weeks at my grandparent's house one summer, but my cousin Wendy came up from Texas for those same few weeks. So I remember that time as my vacation with Wendy, rather than my vacation with Grandma and Grandpa. I remember those visits, though, just not in the way I thought I would. I remember smells: Grandma baking bread (her specialty); the smell of their basement like wet wool, where we slept on beds with scratchy blankets and always took care to leave the rooms as spotlessly clean as we found them; the woody smell of their backyard where they grew plants with the confidence and success of lifelong farm people. I don't remember hugs or praise or inquiries into my feelings about the household rules. It wasn't so touchy-feely. But I knew I was welcome in their house and I knew I belonged there, in the automatic way of family. My grandparents' ways are so very different from my own. I think perhaps they didn't express their love out loud so frequently because they didn't feel the need to do so. Why state the obvious? Why else would Grandma let us have a slice of her irresistible bread, still warm and cut perfectly with an electric knife? Why else would Grandpa keep the old bikes in working condition for us kids? For them it wasn't much about hugs and affirmations of kids' wild emotions ("I understand that you are angry/sad/scared about - insert denied ludicrous kid whim here, for example Frankie's insistence that grape lollipops count as a fruit - but I still have to say no because - insert logical adult reason only slightly undercut by inadequately suppressed smirk.") Their days as parents were exhausting and long and structured by a kind of hard necessity. I contrast that with my own days, filled with work and worry, yes, but also the luxury of silly games and wasted time. This evening I was planting a weigela bush in the backyard with Frankie, while Jörg and Annika were off at the hospital getting Anni's labs drawn. Still kneeling in the grass, I grabbed Frankie and held her close while she giggled in that awesomely wonderful 2-year-old way. "What do you think, Frankie? Do I love you?" "Yes!" came her response, unhesitating and enthusiastic. "Hmmm. I guess you're right! But do I love you a lot or a teeny-tiny bit?" I asked her, knowing full well that "teeny-tiny" is easily Frankie's favorite expression right now. "A lot!" she said, passing by the opportunity to say "teeny-tiny" for the opportunity of wallowing a bit in her mama's over-the-top lovey-dovey. And I hugged her close and leaned her down into the grass, so that the feathery weeds like tassels of wheat growing in our lawn would tickle her cheek as I said, "Right again, little one." Maybe it's true that saying "I love you" so often will eventually rob the expression of its specialness, but I can't help myself, caught between the luxury of spare time that things like dishwashers and washing machines allow, and the feeling of time sparingly rationed whenever I think about the seriousness of Annika's illness and the uncertainty of the next few months. I didn't go to Grandpa's service, although the rest of my family was there. Annika's been sick again, and there's a vague feeling of dread hanging about around here. We just never know when it will be the start of Something again. So, yes, we're checking her poops obsessively for any signs of blood (none), frowning at her belly's increased distention and wondering where the infection is lurking this time. With no runny nose, no sore throat, no obvious symptoms of any kind of viral infection, we worry about bacteria settling into her liver or the fluid in her belly or in her sinuses, poised to make the short leap over to her brain. In my head I can see these bacteria, green jaggedy dangerous looking things, floating around in her blood stream, unchecked by her suppressed immune system. So I did the laundry, just to be sure we'd have clean clothes to grab for any sudden hospital stays. Or, you know, it could be nothing. So I sent my love and regrets to my mom, and stayed home. At my grandparents' request, there was no funeral, just a simple graveside service. I suppose it seems fitting that the man who had so very few words in life wouldn't have wanted speeches and long eulogies to commemorate his death. The last time I saw my grandfather was at my Aunt Pat's funeral. I was glad he got to meet Annika and Frankie finally, but I'm not sure he was able to take notice; he was so obviously wracked by the pain of outliving one of his children: age 6 or age 60, it's never enough. It's an emotion I can certainly understand. My sister did go to his service. I know my sister's relationship with my grandparents was much different than my own. I hope she reminded everyone of my favorite Grandpa story, which, of course, involved no words spoken on his part. Grandpa was notorious for his stubborn frown in all the family pictures. He turned toward the camera with the stony expression of a man who drank a thermos of hot coffee every day out at work in the blistering heat of western Kansas summers and kicked a 4-pack-a-day cigarette habit just because he decided it was time to quit. My sister, the budding shutterbug, pleaded with him to smile, just this once for the photo. "Show some teeth!" she prodded. And without so much as a blink, my Grandpa popped his dentures out of his mouth so they sat atop his still unsmiling lips, giving him a distinctly donkey-like appearance. He gave her a few seconds to pop the shutter, and then he went back to eating his dinner as if nothing had happened. Years later, at my wedding, Grandpa was the only one crying. Frankly, after the alarmingly bad judgment I had often shown in my dating choices, there was a general air of joyous relief that I was settling down with such an appropriately all-together kind of guy. But when Grandpa gave me a hug, I started crying, too, although I have no idea what we were crying for. I suppose it's handy to have a reputation for few words, when most of the important stuff in life is inexpressible anyway.

La Dolce Vita

2006-05-02T23:04:00.000-05:00

For Trisha. Striving for a stupid-sign-free environment together. May you find your own fountain, and may there be no signs, and may Robbie have the time of his life. Much love to you.

normal conversations

2006-05-01T23:46:00.000-05:00

Big Big Words Annika and I, discussing the possibility of getting a dog: Annika: I'm not allergic to dogs, right? Me: No, you're not. Annika: I'm just allergic to cephalosporins and ... what's that other stuff I'm allergic to? Me: amikacin Annika: Yes, that's right. I'm allergic to cephalosporins and amikacin. But not dogs. Me: No, not dogs. ~~~~~~~~~~~~~~~~~~~~~~~ Annika: Do I need to go to sleep for this test? Me: No, not this time. It's just an ultrasound. Annika: OK. But if I have to go to sleep I want Genny to be my anesthesiologist. (Paging Genny, PICU nurse, Genny. I hope those night classes have been going well. Because you're on, baby.) ~~~~~~~~~~~~~~~~~~~~~~~ Phlebotomist: OK, this rubber band thingy is going to squeeze really hard. Annika: That's a tourniquet. ~~~~~~~~~~~~~~~~~~~~~~~ Isn't medical life fun? I mean, what's with Mary Poppins and her "Supercalifragilisticexpialidocious"? Like that's some big tough word. Annika and I are going to write our own song and call it, "Cephalosporinamikacintourniquetanesthesiologist!" Cephalosporinamikacintourniquetanesthesiologist! Even though the sound of it is ER-talk for "you got dissed!" If you say it loud enough, you'll sound hip like a Decembrist! Cephalosporinamikacintourniquetanesthesiologist! (Disney, I am available for free-lance lyric work. Call me! Cephalosporinamikacintourniquetanesthesiologist!) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ The internet is a kind place... I do occasionally fact-check myself; check my spelling ... responsible stuff like that. Not usually until a day or two after I've hit the publish button, unfortunately. In checking my Apocalypse Now quote in the entry below, I was reminded that Robert Duvall's famous line already speaks of gasoline ("I love the smell of Napalm in the morning. The smell, that gasoline smell. Smells like victory.") I feel a bit silly. And nobody called me on it. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ...and so is the world Sometimes I regret not being anonymous here, but I figure that boat's long since sailed (see conclusion above). But the other day I ran into a woman I hadn't seen for ages, a fellow mom from a playgroup that I stopped attending over a year ago. She asked me, as normal people do in the course of normal conversation every day, "How are you?" I hesitated, just slightly I think, over the question. There's always that moment in your head when you're caught between just saying "Great!" and leaving it at that, or saying something more truthful, which will inevitably lead to way more elaboration than the polite question was meant to elicit. In that moment of hesitation, she inclined her head a bit toward me and said, "I read your blog," as if she knew that I was trying to figure out an answer. And just like that, relief! I didn't have to explain all that had happened since I'd last seen her, all our worries about Annika's future, and we could just have a chat, like normal people in a Target store.

zoinks!

2006-04-26T21:10:00.000-05:00

Health news: Annika is doing well. The diuretic has pulled off the fluid that left her so swollen, and she's back to wearing her regular clothes (I had to go buy her some 10/12 shirts to cover her tummy a few weeks ago). She does still approach the world belly-first, poking her rounded tummy out in front of her in a wildly exaggerated manner, like Shaggy after too many Scooby Snax. But, overall, she's feeling pretty great. The girls and I have been spending hours in our yard together. We added a butterfly garden behind the playset, which sounds like an incredibly kid friendly idea until you take into account the fact that Frankie shrieks like a horror show teen queen at the sight of anything vaguely bug-like. We had a little snack break at the zoo recently, which attracted a few flies. To avoid Frankie's banshee howls, I had to fan my arms in front of her non-stop to ward off any flying creatures. I can always hope that butterflies will be more magical and non-threatening to her, but I'm not holding my breath, given the fainting spells over the sweetest little ladybug that happened into our house last week. Our trusty Black & Decker electric mower stopped working last week. A quick check on-line to estimate the cost of getting it going again revealed that our mower had actually been recalled nearly 4 years ago for a malfunction that could damage the mower and cause damage to person and property. Exactly what kind of damage wasn't specified, but my mind went busily to task constructing all sorts of nightmarish scenarios involving flaming clothes and fire detectors with dead batteries. After having Jörg replace all fire detector batteries,* we tried to call the manufacturer, only to miss their closing time by 3 minutes. It was Friday, and I was pretty sure that the grass would be high enough by Monday that I would have to keep the girls inside, for fear of losing one of them in the turf grass jungle. So I borrowed our neighbors' gas-powered lawnmower. Then I spent the rest of the day with a woozy headache from breathing in all that stinky exhaust. Plus I couldn't keep my hands still, as the memory of that tremoring lawnmower handle still worked the muscles. I know that probably 95% of my neighbors here in town use gas mowers, but I still have to say, "Yuck. Why?" Afterward I felt like I was in some suburban reenactment of that famous scene from Apocalypse Now: the one where the soldiers are surfing on the beach while the crazy captain?/sergeant? paces with his cigar, the one who later watches the helicopters bombing the jungle and inhaling deeply says, "I love the smell of napalm in the morning." Except for in this version it would be a bunch of suburbanites drowning out the birdsong, and the line would have to be, "I love the smell of gasoline on the weekend." Since we couldn't wait the weekend to find out if the malfunction listed in the recall notice was responsible for the breakdown, we decided to look into reel mowers. Our lawn is already bigger than is recommended for electric mowers, but I always worked around this by just mowing the front one day and the back yard the next. So I had my reservations about a reel mower, which is usually recommended for even smaller sized lawns. Jörg, the European raised in the land of postage-stamp-lawns, thought a reel mower was a great idea from the very beginning, but since I was the one doing the yardcare, I pretty much got veto power on the issue. But even the corded electric mowers were expensive (the rechargeable ones were completely out of question), and I didn't relish having to swing an electrical cord over my head every time I changed directions. I could already see the girls trying to teach themselves to jump rope with the fun, bright orange cord as I labored away obliviously. So I flexed my arm muscles a few times, just to reassure myself what a powerful woman I really am, and we bought a reel mower. I can't believe that we didn't discover the pure one-with-nature joy of reel mowers sooner. The backyard, with its scraggly, struggling grass is super easy to cut through, with no repeat passes necessary. The front lawn has a bit of a slope and the grass is in better shape (no shade trees), so I have to go over the grass twice and my arms feel all rubbery spaghetti afterward (except for not skinny like spaghetti). But that extra work is more than made up for by the completely entertaining silliness of watching the grass fly up in the air as I push the mower along. When I get going really fast, the grass shoots up in the air just like hair in a cartoon with a barber holding scissors in both hands and working too fast for the eye to follow! Or just like when Edward Scissorhands did lawn work! Fun! Best of all, though, is that I can cut the grass and still conduct conversations with my girls. Frankie will go off to entertain herself happily in the sandbox while I'm working outside, but Annika begins to go into communication withdrawal if she's out of conversational contact for more than, say, 45 seconds. Although having to stop and restart an electric mower to hear a question is not such a big deal, it did get kind of annoying. Now we can continue chatting while I trot along, happily Edward Scissorhands-ing my grass. The rest of the week has me composting the flower bed out front, planting zinnia seeds in the bare spots behind the play area, and planting tiny redbud trees for some much needed patio shade. If you're looking for me around town, I'll be the woman with brown-rimmed nails.** *Jörg has proven himself wonderfully responsive to my brain's feverish overworkings. When I told him that I had had repeated nightmares in which our car went off a bridge into a river and I couldn't open the windows, he bought and installed one of those windshield breaking tools for my car. I think it's great that he works to structure our waking lives to ease the stress of my sleeping life. Or it could be that I always sit him down and recount my bad dreams to him in painful detail. I think he would do nearly anything not to have to listen once more to any of my dream stories, which I usually intone with a dramatic air. I probably should stop watching Medium. **You'd think I'd learn my lesson and wear gloves in the garden. Last year I was digging by hand in the raised flower bed out front and stuck my hand right into into some excruciatingly fresh dog doo. Thanks, helpful dog, but I prefer my soil nutrients a bit less odiferous.

return

2006-04-19T13:34:00.000-05:00

So where have I been? Not curled up fetal-style in a corner somewhere muttering to myself, "My child needs a third liver transplant...my child needs a third liver transplant." Oh, no. But I have had to give up my nightly glass of wine, even if I did read that it helps ward off memory problems as one grows older. The wine, combined with PMS'ing in a flood of hormones reminiscent of my teen years, together with Oxygen playing extremely sad movies after everyone else has gone to bed, has meant several nights of, shall we say, emotional vulnerability. Then I awake the next morning with eyes so puffy that Annika looks at me like, "Who are you and what have you done with my mother, you pillow-eyed freak!" Tuesday's speaking engagement went well. I had my speech timed at just under 7 minutes, which I thought was probably close enough to 5 minutes not to throw any schedules off. Before we left that morning I explained to Annika that I would be standing up in front of a lot of people and talking about her. I explained about the podium, the microphone, and that the main things I would be talking about would be her liver transplant and the time she was very sick. She was all, "O-kaaaaaay. Whatever." Then we got there, and she saw that it was actually a very large room filled with an awful lot of people, many of them wielding cameras large enough to double as rocket-launchers (it was a press conference, remember). That left her feeling a bit nervous, and it took the bribe of some insanely huge cookies from the cafe in the lobby to convince her to stay in the room. Thankfully, my good friend, Jane, had offered to come along and bring along her daughter, so the girls had someone to share in their bored misery. And I had an adult I knew there to make sure that Annika didn't decide to alleviate her boredom while I was speaking by stripping naked and parading around the perimeter of the room. This may sound like a silly exaggeration dreamed up for a quick laugh, but sadly, no. Annika would so love it if we moved to a nudist colony. As I was walking in to the press conference room, one of the Gift of Hope leaders pulled me aside to tell me that State Farm, which was holding the press conference, didn't want me to mention our fundraising efforts during my presentation. I was a little taken aback. I had been asked to speak, I thought, on behalf of Gift of Hope, as a parent of a child recently placed on the transplant waiting list. I was asked to talk especially about waiting, about Annika being on the list. April is National Donate Life month, and the event was sponsored, in part, to promote organ donation and publicize the new on-line donor database, which takes advantage of Illinois' new first-person consent law. Nowhere in the speech I had written did I mention our insurance troubles back in February. Nowhere did I mention that we had set up a (strictly regulated) fund run through a 501(c)3 charity because we were beginning to worry that Annika's medical needs might not be financially covered in the future. Nor did I mention the stress of receiving, frequently, bills for thousands of dollars that the insurance company denies, only to find out that it's all "just a coding error." (Did I mention that I was speaking at the corporate headquarters of a very large insurance company?*) All of those issues are totally relevant to our particular situation, but in no way relevant to the topic of promoting organ donation. So, yes, I felt a tiny bit insulted that someone, somewhere would think that I would take advantage of a captive audience and media presence to fundraise. While it's true that all fundraising efforts from COTA also have the stated goal of promoting awareness of organ donation, the reverse is certainly not true. Jane, always sensible, pointed out that, really, it is difficult to separate the two issues. In order for Annika to have a chance to grow up, she will need 1) a transplant, 2) insurance to pay for the transplant and the drugs she will need the rest of her life, and 3) money to pay for this stuff when the current insurance situation goes all to hell, as it inevitably will. Of those 3 things, I guess I see the first as being the one most out of my control. I will go sing on a street corner, learn magic tricks, jump through hoops in a dog costume and tutu, whatever I need to do to make sure that Annika's care gets paid for (and that's not to say that I'm entirely confident that I would be successful). But there's nothing I can do to increase the number of organs available for transplant, short of making people more comfortable donating by giving really great speeches about organ donation at press conferences - and knowing better than to muddy the waters by mentioning finances. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ So, back to my 5-minute speech that clocked in, at home, to just about 7 minutes. I was introduced by Jesse White, Illinois Secretary of State and organ donation promoter extraordinaire, who encouraged me to bring Annika up with me. Annika was wearing her favorite rainbow-striped tights and purple-flowered chucks (Is Webster's looking for a few good people? Because those urban dictionary folks, they take their defining seriously), so she wasn't averse to doing a bit of a star-turn up front. But then the speechifying started in, and Annika sat down, ready to hear the Story Of Herself. About 2 minutes in, Annika realized that I was leaving out ALL THE BEST PARTS!!!!!!! Therefore she felt compelled to bounce up to the podium every 30 seconds or so to remind me of some very important aspect of her being that really, REALLY needed to be mentioned before I could go any further. So there I was, caught between keeping to the timetable and ignoring Annika's helpful suggestions, or stopping my speech to hear her ideas and constructive criticism and incorporate them on the fly. Of course, I stopped to hear her. Sheesh. After all, the speech was about her, right? If she wanted me to mention her favorite things, well, OK. Luckily, I am familiar enough with her life story to pick up what she wanted me to mention with just a few words, so (I hope) the pauses were not too drawn out and dramatic. And I did manage to mention, in some fashion or another, everything that she wanted included, except for the fact that she is a "chip monster." (Which she is no longer, since her doctors have now put her on a low-sodium diet. More on that later.) After the press conference, one of the local news reporters followed us to a park near our house, so that they could get more footage of Annika. The cameraman came with us in our car, and it turns out that a Taurus does not actually fit 2 kids, 2 adults, and 1 big-ass camera comfortably. Never mind that I had to remove several dolls (in "car seats"), a picnic blanket, and Clorox wipes from the passenger seat, and then insist that he not point the camera at any part of the crumb-crusted upholstery. A few weeks back, Marla wrote about the stress of bringing cameras into your home, and all the little embarrassments you notice being captured on film. Marla, as always, was hilarious, but I can top that whole post in just one word: pimples. And do notice the plural here. I had three gigantic, red, inflamed pimples on my chin, with seven baby pimples clustered around like so many chicks. And that camera was really, really close to my face. Believe me, I do try to keep in mind that it wasn't about me and that my message was far more important than any unfortunate late-in-life acne (awash in hormones, remember?). But they were awfully big. When I saw the segment, though, I didn't even notice the pimples, as I was too shocked to hear that they had included footage of me in the car singing "Dubi Dam Dam" for the girls (at their ever so insistent request, although I didn't resist much at all since I figured that things like that were exactly what cutting room floors were for). Here's a reminder of the musical glory that is Dubi Dam Dam, just in case you're curious. I guess the point of including that bit was to illustrate that I was "just a regular mom" (that, I take it, was the whole concept behind sticking the cameraman in the car with us), except I have a 5-year-old needing a third transplant. We don't have tivo or a dvd player capable of recording, so there's no evidence of my regular mom-ness to share with you all. Sadly (said with a grimace). I was impressed with the report, though. Especially since I am a terrible interviewee. I am so used to doing most of my communicating on this topic in writing that I can't seem to come up with a pithy, well-phrased oral response to even the easiest questions. But, again, that's what cutting room floors are for, right? Then they moved on to interview ("interview"?) Anni. To my surprise she let them pin the microphone on her shirt--she freaked out when the reporter tried that for the organ donor awareness PSA that she was in last summer. But then she stuck her chin down to her chest and jutted her shoulder forward so that she could stare at that little black ball with a look of profound mistrust on her face. She did her best to answer the questions asked of her, but she was totally incomprehensible, what with her neck all scrunched up like that. It was like the news lady had attached a tarantula to her shirt, for all the wary trepidation Annika showed. So not much usable footage there. Of course, the best part, the very best part of the whole day was when Annika ran over to me tugging at her skirt just as I was finishing up my blathering way-too-long-for-tv-interview answers. "I have to go! Right! Now!" I knew there was no way that this was going to end well. Just, no way. So I decided that the least worst option would be at least to get Annika off into the cover of some trees. But, no, this was not happening, either, as I noticed that Annika had already tugged down her tights and underwear to full moon position. I got her halfway into the cover of a nearby pine tree and had her squat, harboring no illusions that the whole process was anything like discreet. On the plus side, when we returned to the park yesterday there was a new port-a-potty placed beside the parking lot. I guess there's nothing like public urination in front of a news camera to ensure good public works in the community! All joking aside, the port-a-potty is needed now more than ever, since Annika was, indeed put on a diuretic last Thursday. As long as she's on the pee-pee drug, we'll need to know the location of all potties within a two-minute radius at all times. Also she has been put on a low-sodium diet, which is absolutely the pits. No pretzels, no crackers, no goldfish, no moustache chips. So, yes ascites. Yes, failing liver. Yes, third transplant. Ugh. And there's really the source of my quiet right now. The whole idea of this third transplant--it's just not that easy to discuss, much less think about. I'm not looking forward to Annika getting sicker. I'm not looking forward to reliving that feeling of increasing desperation as the wait drags on. I'm not looking forward to sitting in that crappy waiting room at the hospital, worried out of my head that she won't be coming back out. But most of all right now, I just hate saying the words, "third transplant." I know that the list of people waiting for transplant is long, and getting longer every day. When I click over to Haley's website, where her mother, Cheryl, writes weekly updates about life after her loss, I read the sentence, "On October 1st 2005, Haley died without ever receiving her transplant." And I fear that the same will happen to Annika. But I also hate to imagine another child not even getting one transplant, one chance to live life, while we campaign for Annika's third. And then I ran across this forum thread. I didn't notice it back when it was current because I'm not usually on top of my StatCounter that lists referrals (and, also, I opt for the free version, which doesn't offer much in the way of referrer logs). I don't even suppose that it's worth responding to (and I didn't), or even thinking about, since it's clear that Annika is currently enjoying life and we're not selfish, tormenting parents. And I can't believe that letting her die of liver failure (a slow and unpleasant way to die), even with lots of morphine on board, would somehow be less cruel to her than putting her through another transplant (again, with lots of morphine on board), and I certainly prefer the long-term outcome possibilities of the second option over the first. But the one point that sticks, although not for the reason given in the discussion, is that this will be her third transplant. And it's not that it would be useless to try again. She's not a chronic rejecter (and even if she were, I know of some kids that rejected chronically with one liver and then did far better with the next transplant for whatever reason); she doesn't have some sort of liver-attacking infection that lays waste to all transplants. Liver transplants are tough, the most technically difficult transplant to perform from a surgical standpoint (so I've been told), and she's had complications. Repeatedly. Still, all things being equal, I wouldn't bet against Annika coming through this. But, of course, all things aren't equal. A liver going to one patient means another goes without. Donated organs are a scarce resource. I'm still pulling myself through Twice Dead, the book that questions our acceptance of brain death and organ donation, contrasting it with the huge public debate on this issue in Japan, which has meant that very few transplants have been performed there, despite that country's medical and technical expertise. It's not an easy read, and, although I appreciate that she is trying to give the topic an unbiased and objective appraisal, her views on the matter are quite clear: in the stories she chooses to present, in the questions she asks, and in the questions she doesn't ask. One phrase that clearly drives her to distraction is "organ shortage." But she never clearly explains why this phrase is so troublesome for her. Does she suspect that organ donor advocates are sneaking out at night stealing helmets from unsuspecting motorcyclists? Are we rooting for new and creative ways to inflict head traumas? Do we have a secret lobby pushing to block funding for new research in neurological medicine? What? Isn't it just a plain statement of fact: that there are not enough organs available to transplant everyone who could benefit from a transplant?** None of this is to say that anyone needs to jump in to reassure me that, yes, it's OK to hope for another transplant for your child, even if there are not enough organs to go around. I'm a parent and I love her blindly and that's as it should be. And I know, I know that we aren't "torturing" her out of a misguided and selfish love that refuses to let go. But it's much easier to write when the stuff in your head isn't so contradictory and unsettling. So here is this, instead: Yesterday I took Anni to the hospital lab for another blood draw. Our hospital is a catholic institution and there is a statue of Jesus holding out his arms in a beseeching manner right next to one of the exterior walls. Annika always likes to go have a look at him on her way in. Luckily, the statue is surrounded by fairly thick bushes so I don't have to worry about lecturing her about not climbing or anything else crazy she might decide to do which might send the nuns into fainting spells. As usual, she ran across the lawn up to the bushes to get a good look before heading in. As we walked in to the hospital, she threw a glance behind her. "I think I'll call him 'Johnny Jones'!" she declared. Sighing, I decided I had better set her straight before she started making up stories, loudly, about good old Johnny Jones standing out there in his bathrobe. "That's a statue of Jesus, Annika." I knew she had heard the biblical story of Easter at her lutheran preschool, so I thought I could probably let it go at that. But, no. She wanted to know, "What's Jesus saying back there?" And what do you do almost automatically when your child asks you a tough question? Ask a question back! "I don't know, sweetie. What do you think he's saying?" "I think he's saying, 'I'm alive!' ... " She threw her arms up in the air, like she was ready to hit the evangelical praise circuit, and then she added, "He's saying, 'I'm alive! So let's go to the park and play!'." She gave a little twirl, for emphasis, I suppose. So there you go, for any rational doubters who may suspect that Annika's life is a sorrowful one. She knows that living is about joy, and she knows how to find it, no matter what else is going on. And so do I. *I should also mention, though, that our insurance company has been quite helpful -- setting us up with a case worker who responds to these errors and corrects them quickly for us. Still, it takes time and effort and heaps on stress during an already stressful situation. I don't think, really, that the insurance companies are to blame here. Not really. They are, after all, businesses. I just think the whole system is set up in a crazy, unworkable fashion for those who actually need the coverage most. And I certainly think that health insurance should be set up and run completely differently than, say, car or home insurance. **I'm certainly being ungenerous here. I suspect that her discomfort comes from the fear that casting the situation in terms of a "shortage" might lead to a sort of activism that will pull the definition of "death" into murkier areas. But given the strong pro-life movement in this country, I cannot imagine that a move like this would ever be successful (not that I would support such a redefining of the boundary, either). Most proponents of organ donation act to address the shortage by combatting myths surrounding transplant and recasting public attitude toward organ donation.

crispy

2006-04-09T21:16:00.001-05:00

This Tuesday I'm going to do a 5-minute talk at a press conference here in town to promote National Donate Life month. Illinois' Secretary of State, Jesse White, will be there. He has been a tireless promoter of organ donation in these parts. I heard him speak a few years ago about his own family's experience: they said "no" to donating his brother's organs, and then his sister needed a kidney transplant several years later, which led him to rethink the system and his own attitudes toward organ donation. It was fascinating and moving to hear him speak on the subject. The real difficulty has been limiting myself to 5 minutes. I'm a bit of a droner, you know. But I've trimmed my adjectives and jettisoned some unnecessary medical details, and found the task of focussing my message to be an enjoyable challenge. Not that it should be that great a challenge. I mean it is five whole minutes; it's not like I'm trying to write haiku, here. (Organ Donation Haiku! I like it. Submit some in the comments section, if you're as bored by tonight's TV schedule as I am. Here a page with Haiku links. I like the first article from that page.) ~~~~~~~~~~~~~~~~~~~~~~~~~~ The other night, Jörg called me upstairs in his worried tone of voice. "Come here and look at this. Do you think Annika's tummy has gotten a lot bigger?" I looked. She popped it out for me, arching her back and rotating like a supermodel. "I don't know," I said, "No?" And then I added, "You worry an awful lot, sweetie." A few days later I took Annika in for her weekly lab draw, and her transplant coordinator called us a few hours later. "Everything's mostly the same," she reported, "except her albumin, which dropped by a lot. Have you noticed her tummy getting bigger?" Jörg was at work at the time, so he couldn't throw me a triumphant glance as he danced around the room, shaking his booty and chanting, "Uh-huh! Uh-huh! I knew it!" So we'll be taking Annika in to Chicago on Thursday to have her checked for ascites, which could be signaled by a drop in albumin accompanied by increased abdominal girth. If she does have ascites, she'll need to start taking diuretics. It's not a huge deal, really. She's been on them before, although I seem to recall that oral Lasix was nasty tasting. But it's kind of a bummer. Up to this point, Annika's been on post-transplant drugs. Lasix, to me anyway, is totally a pre-transplant drug. It's one of the drugs you take when your liver is failing. Mind you, this category is 100% a product of my own little mind, but, still, bummer. ~~~~~~~~~~~~~~~~~~~~~~~~~ Annika has started physical therapy again. Our main "exercise" goal for her right now? Standing. Yup. Just ... standing. Evidently just being up on her feet for 5 minutes caused Annika's pulse to increase quite a bit and her breathing to become noticeably heavier. (Jörg pointed out to me that the heavy breathing could be due to ascites, but I'm not sure if this makes the situation better or worse.) On the way in to Easter Seals, Annika found a gigantic worm in the parking lot, still wiggling but looking distinctly uncomfortable. So we picked him up and moved him to the mulched area around the bushes. Annika got down on her knees and watched him expectantly. The worm was working his way down under the mulch, but he wasn't breaking any land-speed records in the process. Already 3 minutes late for the therapy appointment, I convinced her to go in the building, under the guise of giving the worm some "personal space." On the way in she announced, "That's the best worm, ever. I'm going to name him 'Christine.' " So that was his name. I guess she was having a Johnny Cash moment (I know the song was Shel's, but "having a Silverstein moment" doesn't sound nearly as funny). Later on that day, Annika decided to devote all her efforts to worm rescue missions. She carefully searched all concrete areas for any worms in distress. Just a few minutes later she came back holding one extremely crispy worm and looking forlorn. "I think he's already dead, isn't he?" Showing that I certainly do know when not to be sarcastic, I answered gently, "I'm afraid so. Why don't you go find a good place for him?" She trotted off, holding the worm in her hands, cupped in front of her. But then she tripped a bit over the uneven spot in our front walk. She paused. "Uh, mama? I think his head just broke off." And then I ruined my Good Mommy routine by asking, "Are you sure it wasn't his tail?" She lifted her hands right up to her face for a closer look. Then she just shrugged. "Could be." Needless to say, I wasn't invited to the funeral.

stylin'

2006-04-06T21:42:00.000-05:00

Organ donation can be an uncomfortable topic for all the obvious reasons - it doesn't normally come up, say, during speed-dating sessions - and shirts that promote organ donation aren't usually very cool At All. But here's a shirt from my friends over at Liver Families that finally brings on the style: Save 8 Lives collection on CafePress. Finally, a shirt that you can sport in good conscience without feeling vaguely like a public service announcement billboard. Thanks, Mika!

framing

2006-04-06T20:59:00.000-05:00

The much anticipated Kite Day did not work out, despite the most beautiful sunshiny weather a little kite-flier could ask for. Annika was just feeling too tired, all day long, to work up enough enthusiasm to move herself off the sofa. I was disappointed: we had talked about it all weekend long, checked the weather report to choose the optimal day, discussed the kind of kite she would choose for the expedition. I know the outing was for her and Frankie, not me, but I couldn't help feeling a little angry that day. It's crazy to be angry at her, but sometimes I just want her to get up and get going and live life and be H.A.P.P.Y. Instead she sulked around the house all day, whining instead of conversing, and disagreeing with me at every turn. Frankie, too, was disappointed, but taking her to our backyard was enough to restore her good cheer, while Annika sat on the sofa, snuggled into a woven throw blanket and drinking chocolate soy milk while watching a DVD of Hello, Kitty! episodes from the 80s. Annika was finally lured outside by a visit from her neighbor friend, Sabrina. And then the two older girls (they may as well be pop star superheroes for the kind of adoring reaction they generate from my two) from across our backyard came over to turn it into a near party. But as the rest of the girls ran around happily, Annika ambled unsteadily at the fringes. Until, with no warning, she just toppled over. Frustrated and a bit sore, she headed back inside. Where her mood turned even darker, until we finally settled her into bed early. Contrary to most television specials on the subject, sick kids, particularly ones that have had issues all their lives, can be the most annoying creatures you have ever met. They have often been a bit over-indulged, and they frequently know how to pull the parent puppet strings with shocking mastery. They can get whiny and grumpy and generally exasperating. And you want to just shout, "Enough!" (And you sometimes do.) But in the back of your head, you know that usually the bad behavior springs from feeling lousy that day. The question becomes: how much slack do you cut a kid in the name of understanding? Obviously, you don't want to throw all your rules out the window, but you also don't want to make your kid feel like they don't have the right to complain or express their feelings. Sometimes, when I talk about it to other parents, it feels like the boundary should be simple. Something like, stick to the rules as usual, but be sure to make it clear that their feelings are warranted and that you are sorry they're not feeling well. As with everything else in parenting, though, it's always so much harder to put into practice. Annika greeted the next morning by telling me the first bold-faced lie of her life. Not the kinda sorta true, but not really, mumbled half-truths she's come up with before, but an all-out, embellished with lots of (false) details, 100% unmistakable Lie. So I took away all TV-watching privileges for the day. Now, one day may not seem like a lot to you normal parents out there, but TV is Annika's crack cocaine. And I was pretty sure that taking away the TV for one day was going to be about as much fun as going through detox with her, which, incidentally, I have done. Twice! (And they don't share the methadone with the parents, you know.) Surprisingly, though, the day was wonderful. We ran errands in the morning, and I let Annika and Frankie choose their own flowers (pansies, the big, fat, frilly ones with the eye in the center of the flowers) to plant around the house. In the afternoon, Annika went to preschool (she started this week and words cannot describe how thrilled she is to be back). When Frankie and I picked her up, she told me proudly that she had done "Kindergartner work" that day, and showed me the counting workbook page she had completed. Then we went home and planted flowers. True, she got tired after about 15 minutes and went inside to hang out with Jörg, but she was back out again 20 minutes later and played until bath time. She was asleep by 6:15. Patience, really, is what it takes. Sometimes a whole lot of patience. There are bad days, sometimes weeks and weeks of bad days one after another. But there are always very good days, too. And sometimes weeks and weeks of very good days. Framing skills are also very handy when you're creating the mental picture of your life. I've been focussing so much on the scary aspects of Annika's medical situation, mainly that she needs a transplant but isn't strong enough to undergo the surgery right now and meanwhile keeps bleeding. But the more pertinent fact is that Annika's surgeon is willing to retransplant her. Certainly he wouldn't choose to do that unless he thought that she had a shot at coming through the surgery and living many more years to come. So maybe those many more years will find Annika honing her whining skills to a sharp and annoying point. I'm sure at some point I'll finally muddle my way into a more effective approach for those moments when I find my teeth grinding together at the high-pitched keening sound of Annika protesting the unsatisfactory temperature of the water in her cup. This, in fact, was my very situation just a few days ago. I let out a theatrical sigh, loud enough to startle Annika into silence. Then I hunched my left shoulder up to the side of my neck, elbow cocked to bring left hand right up above my shoulder. Then I began making tiny sawing motions with my right hand, which was right up beside my left. "Do you know what this is, Annika?" Eyes wide and serious, she shook her head. "This," I say dramatically, "is the world's tiniest violin playing the world's saddest song." Jörg rolled his eyes at me, "I don't think she's quite old enough for sarcasm to be an effective communication tool, do you?" But Annika was not put off at all, looking, instead, rather intrigued. "How about we hear that very sad song, Mama?" And Frankie, bless her sweet and loving little heart, raised her arms for a hug, "Oh! Don't be sad, Mommy!" ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ April is National Donate Life month to promote organ, tissue, and blood donation, and recognize the positive impact donors have had on the lives of so many. Go to Donate Life for more information, and, if you live in Illinois, you can click here to join the on-line donor registry. The organization I volunteer for (Gift of Hope) also has a wonderful and informative website. Pass the links along, if you like, and feel free to pass along this photo of a beautiful (if occasionally grumptastic) little girl from her forever grateful parents:

watch out for the bruise monkey

2006-04-04T09:37:00.000-05:00

I spent last night making Annika and Frankie some car mix CD's, and today has been designated "kite day," so I'll save a longer update for tonight. But here are some quick Annika-isms while the girls are downstairs eating breakfast: Bad weather swept through the midwest over the weekend. Annika was very excited because we all went in the basement together when the Potato Sirens went off. Yes, that's right. We live in Potato Alley, and every Spring we brace for the onslaught of potatoes suddenly dropping from the sky, leaving unbelievable destruction behind. You know, they made a movie with Helen Hunt about it. (By the way, that movie was perhaps the worst thing that ever happened to our cat, Hepburn, who has the misfortune of bearing markings incredibly similar to the famous flying cow. For months afterward, Jörg would pick her up and twirl around. "We've got debris!") Annika fell out of her bunk bed last week. I guess it had to happen sometime, and the floor is nicely padded with carpet, but of course it still stopped my heart just a bit. She was fully awake (trying to exit down the ladder face forward), and caught herself with her arms and legs, so no head or abdominal injury. The next morning Jörg noticed that her legs were pretty bruised up and asked her what happened. She glanced down nonchalantly, shrugged her shoulders and replied in a matter-of-fact tone, "Bruise Monkey." And that was all she had to say on the matter. Of course that got a good laugh and Jörg asked her, "Are you a little comedian?" Annika, still in her perfect deadpan, corrected him, "No. You mean, 'Am I a chameleon?' " And then she finally broke down and laughed.

lots of blinking

2006-03-27T22:08:00.000-06:00

Annika bled Monday, Tuesday, and Wednesday of last week. Thursday we brought her to see her docs in Chicago, but that was the day she finally stopped bleeding. Whew. Now we are working to set up arrangements for Annika to receive transfusions at our local ER, so that we don't have to haul her to Chicago every time her hemoglobin gets too low. We also had asked for someone to entertain the girls elsewhere for a few minutes, so that we could ask Annika's GI some questions without worrying about Annika overhearing the conversation. It turned out that Annika's transplant coordinator, Joan of the Amazing Footwear, volunteered for the job. Talk about your expensive babysitters. Mainly I wanted to know, honestly, what the doctors feel Annika's prognosis is. When we asked about prognosis, Dr. Alonso again began explaining that Annika is just not a good candidate for surgery right now, which was a point we already understood. But then she went on to say that it's the worst feeling when you've taken a child into surgery, and then lose them on the table, thinking that perhaps, if you'd just let them be, they could have had 4 or 6 more months of life to enjoy. Which then, of course, begs the question, is that what they think Annika's situation is? That we're just eking out months here by avoiding a dangerous surgery? The fact of the matter is that, of all the kids we've known who have needed a transplant but been told by their doctors that they need to wait until something or other improves or changes or whatever, those children have all died within a year or so. Jörg always tries to tell me that Annika's case is different, but I'm not so sure that just because her specifics don't match up exactly to those other kids that she's necessarily in a better position. It was pretty clear that Dr. Alonso, although she was trying to be straightforward with us (after all, we had the world's most expensive babysitter waiting for our conversation to end), wasn't exactly sure how to answer the question. She said that, if Annika were to have a major, uncontrolled bleed, that there would be very little that they could do about it. And that would be it. But, she said, maybe if something like that happened in October or sometime very close to Dr. Superina's boundary of November for transplant, they might be able to convince him to give it a shot. But there was much shrugging of shoulders as she laid out the various scenarios. We know that there is no saying with any certainty how things will go for Annika in the next 8 months. We do know that. I suppose that I was just angling for some sort of information on her gut feeling on the matter. So finally I asked, "Well, are you nervous about Annika?" She was nodding practically before the question was out of my mouth. "Yes. Definitely, we are nervous." I think she saw the way I started to blink very rapidly at how quickly and forcefully she had agreed with that assessment, because in the next breath she was trying to soften her words. "But there are some situations that we are pessimistic about, when we all say to ourselves, 'This is very, very bad.' And we're not there yet with Annika. We're just nervous right now." We asked her, too, what she thought about sending Annika to kindergarten in the fall. When I asked this, I could almost see Annika's face, eyebrows raised in that hopeful way she has when one of us has said, "Well, go ask your dad (mom) if it's all right." Dr. Alonso said that, if Annika really wanted to go, then we should send her. "Of course," she continued, "it might be that she catches something there that leads to a massive bleed..." (a longish pause, in which we all contemplate the unsaid) "Well, then, at least she's gotten to enjoy going to kindergarten." Then she said something about palliative care, but I was too busy blinking like mad again to follow. It's all like the punchline of a bad joke: "The number one cause of death? Living!" Or maybe the chorus of a Townes Van Zandt song. As usual, though, everyone was impressed with how good she looks, with how well she's walking and her energy level, given all she's been through. In last week's New Yorker Calvin Trillin contributed a beautiful piece on his late wife, Alice. (If you clicked on the palliative care link above, you might have noted that Alice Trillin was the author of an essay, Of dragons and garden peas: a cancer patient talks to doctors, discussing her diagnosis of lung cancer.) Reading Trillin's tribute reminded me of the fantasy we cling to that perhaps will itself is enough to thwart death. Alice Trillin calls it one of her "talismen" in her famous essay, acknowledging its irrationality, but still granting it a place in our thinking. Watching Annika run around with Frankie and Joan, it's easy to understand how powerfully hope can depend on such wispy things as will, as a laugh that seems to defy any notion of illness. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ In other news, now that Jörg has been officially granted tenure, he's applying for American citizenship. I'm not sure if citizenship can be granted to someone who refuses, in general, to eat casseroles. He tried telling me that lasagna is a casserole and he's not opposed to that, but I explained that in order to truly qualify as a "casserole," some variety of Campbell's soup must figure as a prominent ingredient. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ If you're looking to celebrate Easter, but just aren't sure that the Target bunnies are hip enough for you, check out spidercamp's Etsy shop. She's offered to make bunnies with scars on their tummies for kids like Annika, so you know she's Good People. And, speaking of incredibly cool bunnies, the generous, lovely, and loquacious Marla has offered up one of her prized possessions, a 1912 edition of Peter Rabbit for raffle on Annika's internet insurance policy raffle page. It's a beautiful gift and Marla lovingly recounts its provenance. Wow. Plus, Catherine Newman offers a signed copy of Waiting for Birdy (I've been wondering if maybe Birdy might also be convinced to smash one of her beloved string cheese sticks inside the front cover for added personalization). If you're not addicted already to Catherine's Bringing Up Ben and Birdy column, this book should certainly do the trick. And, of course, All The Wonderful People Who Knit have contributed items, including this round's lovely scarf from Gawdessness. ~~~~~~~~~~~~~~~~~~~~~~~~~~~ Jörg has received two emails from Michael Moore's staff. Evidently, one of their "this is how it should be done" cases involves a little Canadian girl who received three liver transplants with no insurance woes whatsoever. So Annika's case offers up a nice symmetry. Plus it cannot have escaped their notice that we live in a town called "Normal" and that quite a few Canadians have taken up Annika's cause. ~~~~~~~~~~~~~~~~~~~~~~~~~~~ Finally, here's this post's gratuitous Frankie photo: a totally spontaneous, unsolicited hug for Riley during their visit last week. Really, I just happened to have my camera sitting on the coffee table in front of them. There was no "give us a hug for the camera" business involved at all. If this picture doesn't make you feel all warm and happy, then you probably need a Frankie Hug yourself.

Visit

2006-03-25T15:38:00.000-06:00

Riley, Annika, Shelby, and Frankie
Originally uploaded by moreena.

A visit from our good friends, the Martins was a welcome treat this week. Here's a little movie (1.2 MB) answering the age-old question, "Why don't you have more photos of all 4 girls together?"

acclimating

2006-03-20T23:11:00.000-06:00

We've begun life under our new regimen. Annika had a bloody stool today. She asked, "OK! So are we going to the ER?" "Nope," I answered, "we'll just take you in to the hospital to get your labs drawn and watch you at home to make sure it doesn't get worse." She pulled one of her "hmmmm, I'm not sure if I agree with you on this one" faces, but only said, "I think I'd rather go to the ER." I guess that's what you get with all those darn nice nurses. Annika apparently considers bleeds "occasions," like a birthday party. To soften the blow of missing out on the placement of two large-bore I.V.s (exactly how short is her memory, after all?), I agreed to Annika's idea of having an early Easter. Annika likes to be in charge, though, so she insisted on being the Easter Bunny. We still have leftover Halloween candy, so she chose to fill each delicately shaded pastel egg with fake eyeball chocolate. Then she hid the eggs around the house in painfully obvious spots. I tried to ramp up the excitement a bit by pretending that I couldn't see the lemon-custard colored egg sitting in plain sight on the coffee table, with not even a few magazines to provide camouflage (Frankie enjoys taking my half-read magazines and stuffing them under the sofa - she's none too subtle in her demands that nothing divert my attention from my motherly duties). But Annika's never been one to enjoy drawing out the moment. She took my hand and led me into the living room, motioning toward the coffee table with a flourish worthy of a spokesmodel indicating the fabulous prizes on The Price is Right. After I found all the eggs, and then hid them all over again for Annika to find ("But make sure they're not so hidden, 'kay?"), the girls broke into their Eastereen bounty. Each one of the eyeball candies is chocolate with a different filling inside. Annika held one up to me and asked, "What's inside this one?" The type of filling is handily stamped on the outside (which kind of ruins the authenticity, as far as I'm concerned), but I was busy shooting photos, so I said, "Why don't you guess?" Annika's response was to shake the chocolate up and down, as if she were rattling a Christmas present. "Peanut Butter," she pronounced confidently. I have no idea what kind of sound, exactly, peanut butter makes inside a chocolate eyeball, but I'm thinking she and Forrest Gump need to have a little talk. Then Hepburn found one of the eggs. Well, "found" it sitting right in the middle of the floor, and began doing that crazy paw-batting and pounce thing that cats do, even 16-year-old cats with bad thyroids. "Oh, no!" shrieked the girls, and there was much chasing and screaming and faux-concern over the egg's well-being. I'm pretty sure that we'll be having Easter every day for the next couple of weeks. Annika actually looked better today than she has for a while, and her rosy lips told me that her hemoglobin would come back fine. Which it did. Well, much more anemic than she was before all this started, but fine for her at this point given the situation (how many qualifiers could I add on here?). Up at Children's, the general rule of thumb was to transfuse when her hemoglobin dropped below 8. During those long months when her body was so sick that, apparently, making new red blood cells to replace the ones lost to bleeding was at the bottom of the "to-do" list, after such things as "reinflate right lung" and "close giant hole in abdomen" and "clear massive pus-ball resulting from leaked bowel contents," she rarely deviated from that 8 borderline, bumping up only temporarily after transfusions. I remember asking the PICU doctors once about any long-term effects of prolonged anemia, and at what point a hemoglobin was so low that it was considered dangerous. In the cheerful manner of one who has seen way too many medically freaky things at an age much too young, the fellow explained, enthusiastically, that it's not really the level of the hemoglobin that matters so much as how rapid the drop has been. "I've seen kids come in with crazy hemoglobin levels, like 2... and they're just fine! Because the drop for them has been gradual and their bodies have adjusted along the way. It's amazing, really." I wonder if the same thing is happening to us, as a family. We were all so calm about the bleeding today. OK, it was easier to be calm because it was clearly not a massive loss of blood and she was acting mainly normal, except for a stubborn refusal to eat. But, still. Every other time we've seen such vivid evidence that things are still not all right inside her, we've reacted with, "Not again ... this can't be happening ... oh why oh why ... yadda yadda yadda." And I know that we got the straight-talk warning from Dr. Whitington that this would be happening frequently to her, but I'm still amazed at how quickly our brains and our hearts seem to be adjusting to this new life-style. I wonder how low our hemoglobin will go before we notice the drop. Because I am a total emotional masochist, I am currently reading Twice Dead: Organ Transplants and the Reinvention of Death by anthropologist Margaret Lock. It's not an easy read - in the first few pages she writes quite unflinchingly about the process of organ procurement and a transplant surgery, and then questions whether or not she would be able to put a child through so much suffering in the interest of prolonging his or her life. I've not gotten far enough to enter into a thoughtful discussion, not least of which because I have to re-ignite the part of my brain that can plow through sentences loaded with words like "reify" and "valorize." But I have to say that, so far, some of her criticisms seem to be missing the point entirely. For instance, she wonders why donors must remain anonymous and why there is no financial compensation to donor families for allowing their loved ones organs to be "commodified" in this manner (and I have to admit that one of the things that has grated on me most so far is the frequency with which she places words in quotes to indicate her raised eyebrows, but here I find myself doing the same thing with her). Clearly she's not talking about putting organs onto the open market, but instead about making the gift-giving more reciprocal. Although I can't say that this is a bad idea, especially not if you're talking about bestowing some sort of honors at burial for organ donors, I do wonder if a bad implementation of this idea might come off as insulting to donor families. If you're giving money to donor families in recognition of their act, you have to be very careful not to make it appear that you are putting a dollar figure on the worth of someone's donated organs. Or merely making a token show of gratitude that is woefully inadequate to the magnitude of saving someone else's life. The area of organ donation and transplantation is already fraught with ethical concerns, and recognition of this fact is one reason that I'm reading this book, but I cannot see how bringing money into the equation would do anything but raise even greater concerns. As it stands, organ donation is taken to be one of the true acts of altruism, and that is, I suppose, what makes it so moving. I'm looking forward to reading more of the book, though, especially since I've always been curious about the Japanese stand on organ donation and why it is so controversial in their country. I don't mind having my assumptions challenged every once in a while. And here's a lovely gratuitous photo of Frankie, in service to no part of this blog entry. Just so you don't think I only take photos of Annika.

the forecast: more of the same

2006-03-18T19:24:00.000-06:00

Big news at the front end: Annika is back home. Pale-skinned and mudbrown smudges under her eyes, but home. Here's how this latest episode played out: She started bleeding Wednesday afternoon, and Jörg took her to the ER with the understanding that I would stay home, pack, and reassure Frankie. After I got her to bed, I would head to the ER to trade off with Jörg while our neighbor stayed with Frankie until Jörg could return home. However, when Annika heard that she was being transferred to Chicago, she requested that her Daddy accompany her instead of me. It took Jörg all of about 3 seconds to decide to cancel his classes so he could go with her. Hey, it was the last day before Spring Break, traditionally not an educationally effective day, anyway. Children's in Chicago sent their helicopter to pick her up from our local hospital and deposit her back into the PICU. At first I was a little taken aback by Chicago's reaction. I expected an ambulance to 6 West, not a helicopter to the PICU. After all, the bleed had only just started and, although it was bright red blood which is worse than the tarry black stuff, it was only a small amount compared to what we had seen before. Later that night, much later, it hit me. She's having a bleed while on her new medicine, propranolol. This medicine was started in an effort to lower the pressure in her portal system, which would, hopefully anyway, mean that she would not have any more bleeds. But the problem with propranolol, in addition to the fact that it hasn't really been shown to work this way in kids, is that it lowers the heart rate. When you're in the middle of an active bleed, you want your heart rate to go up in order to keep pumping enough blood to your vital organs. If there's less blood overall in your system (because of the bleeding), you need your heart to pump faster to make better use of the lowered volume. Since propranolol suppresses that natural reaction, a bleed could be more dangerous.* After 24 hours in the PICU, they were ready to move her upstairs to 6W, reassured that this bleed did not appear to be worsening. And then 24 hours after that, housekeepers had to be called to 6W to clean up the mess of Residents' jaws all over the floor, once Dr. Whitington announced that he was sending her home. Quite the surprise. So now we have a new plan. Evidently the propranolol is not stopping her from bleeding, and perhaps makes it more dangerous when she does have a bleed, so she's off that now. Her liver enzymes (which sometimes indicate liver damage) are still elevated. I had hoped the elevation was a temporary effect of her recent vaccinations, but the accepted theory now is that the propranolol may have caused reduced blood flow to her liver, resulting in damage. The reason that this is important is that the transplant surgeon has finally pinned down a date that he thinks would be the soonest he would consider retransplant for her: next November. So we need to be very careful that we don't do anything that might risk liver failure before that date. Just so we know what we might be looking at, Dr. Whitington explained to Jörg that Annika is likely to have something like 20 bleeds between now and the date the surgeons have set. In recognition of that fact, we have now agreed that we will no longer head straight to the ER at the first sign of a bleed. Some of those 20 bleeds might be minor ones, like this one turned out to be, so we'll wait until it's clear that the bleed is, in fact, a major one before we bring her in. I heard this bit of news with a weird mix of disbelief and relief. Relief that we don't have to run right to the ER before we even know if it's going to be bad; relief that we've been given hope that not every bleed is going to need intervention. But there's some incredulousness, too. I mean, of the 8 or so bleeds that Annika's had since September, this has been the first to end so quickly and not to require multiple transfusions. That's not the greatest track record. Still, her doctors are concerned about her quality of life - and certainly staying out of the hospital, if possible, is going to go a long way toward improving that. As long as the message is not something like, "Enjoy her life while you can because we're not too sure where this is going, but none of us are holding our breath." Neither of us is really sure what the doctors in Chicago think her prognosis is. It's a question that I'm not even sure they can answer with any certainty. Remember when I asked the surgeon about her needing another transplant? Back when she first started bleeding again after the shunt surgery? He told me that retransplant was on the horizon, but "only a teeny, tiny little speck on the horizon." I guess that means we're living life through a telephoto lens, given how that speck has zoomed in to full view in just a few short weeks. No wonder I'm having trouble getting the big picture. All of my information is coming secondhand, but I take it that the transplant meeting last Thursday found the doctors somewhat conflicted on the topic of Annika, with the medical doctors pushing for the necessity of a retransplant, and the surgical doctors saying that, nevertheless, another transplant would not be a good idea just yet. I guess "conflicted" is just not the word I want to come to mind when describing discussions concerning my daughter's future. At least the insurance disaster has been resolved for the time being, so that we don't have to worry about coverage for this latest stay. At least, I hope not. We are just ... tired. Tired of fighting, tired of bad news, tired of wondering what the doctors are really saying about Annika's chances during those Big Meetings. I guess I just wish she didn't look so sick. ~~~~~~~~~~~~~~~~~~~~~~ * After writing this, Jörg and I had our own Big Meeting to discuss the questions we have for the docs when we return to Chicago for liver clinic this week. He tells me that no one seemed concerned about propranolol's effect on the bleeds, just its effect on her liver. OK. But why did no one mention this possibility before she started propranolol? We sure do hate the feeling, the constant feeling, like the game plan is being made up as we go along.

dancing on the edge of a cliff

2006-03-15T17:23:00.000-06:00

Yes, that is really how I described, rather melodramatically, the feeling of proclaiming good news too loudly. How in the world did I get to be so superstitious? As if drawing attention to good fortune were an open invitation to rain giant golf balls of crap down on our heads? I can completely see how strange behaviors and irrational beliefs start to become the stuff of everyday life. It's like we're living in our own little Skinner box. Didn't pack a suitcase to have in the trunk, just in case, for a clinic visit? Annika spikes a fever right as we walk into the examining room. Ask to have an I.V. removed because it's bothering her and she doesn't seem to need it anymore? Suddenly a few new intravenous medicines will be necessary. Celebrating good insurance news and apparent good health? Time for another bleed! So there it is. The news from our little rat maze: Annika started bleeding again this afternoon. Jörg is with her at the E.R. I'm packing and arranging care for Frankie. Annika is in excellent spirits.

her next game was called "Princess Robot"

2006-03-14T23:14:00.000-06:00

There are two entries bouncing around in my head. One is happy, celebratory, madly-out-of-touch-with-reality optimistic, and the other is all somber and serious. They cancel each other out, so that nothing comes to my mind when I try to put down a few words. And when I cast my net into the wider world to try to find some new perspective, I find the same swing from joy to sorrow in everyone else's lives, as well. On Jörg's usual Sunday calls to Germany, we heard wonderful news from Maja and Schäfer about a new life expected, and just a few minutes later, we heard sad news from Martin and Judit about a life nearing its completion. Our liver friends, the Martins, may finally see closure on a difficult chapter of their lives, while a different liver family, the Ketters, are viewing with trepidation a new saga in their post-transplant lives. Annika's health improvement has been like watching a little miracle unfold each day, but then my PICU friend, Angela, called to let me know that another mom in our Hospital Holidays 2005 club lost her baby to post-transplant complications. [Annika with Maja: Anni's already eyeing her own black leather trench] [Annika with Judit, enjoying the love] Over the weekend, I did a bit of searching, trying to find people who had linked to Annika's medical fund in order to update my template with a big page of "thank-you" links. I was surprised at the number of people who commented that my journal was just too depressing, and I feel like I owe a bit of ebullience to balance out all those downer months, to myself as much as anyone. But on the other hand, my deeply entrenched superstitions hold that celebrating good fortune too soon is just like dancing on the edge of cliff, certainly exhilarating but also unquestionably risky. This back-and-forth covers not only my emotional state, but also my more intellectual moments. Last week I was sent an invitation to share Annika's story on a website formed as "a support group for parents who receive an adverse diagnosis before or after birth," and to be a parent mentor for others in the same situation. At the very end of the email was the kicker, "This is a prolife support group with people of many faiths involved." Right then I knew that I could not get involved, mainly because I believe that support groups should never involve themselves in politics, even politics involving such personal issues. Or maybe, especially not politics involving such personal issues. Either you're there to provide support, or you're there to advance a political cause, and I don't think you can do both successfully. And then, of course, there's the fact that my particular politics are pro-choice, although I certainly do not believe that terminating a pregnancy for Down Syndrome, which is what is usually caught in prenatal testing, should be automatic. (For a lovely, thoughtful take on being pro-choice and choosing to have a child with Down syndrome, check out Sarahlynn's post on her decision). Still, I was hoping that the website was not simply a new addition to the arsenal peppering guilt upon any woman who decides not to go through with a pregnancy. Because I was dithering away, flummoxed by my own conflicts, I decided to check the website out. I was pleasantly surprised to find that it mainly existed for people to explain their choice not to terminate a pregnancy in the face of devastating news, and why their choice was right for them.* Or, in the words of Michael Berube, attempting to "decrease the abortion rate by persuasion rather than by state coercion." Of course, our particular story has absolutely nothing to do with any of those scenarios. Annika's liver disease is almost never caught in even the most advanced ultrasound, and perhaps does not even begin to develop until fairly close to birth. So I really don't have anything to contribute to the discussion of choosing to have a baby with a serious medical condition or not. While Annika was in the PICU, on a ventilator, we sometimes chatted with the nurses about life with childhood liver disease. I talked about how much more difficult it was going through all this with another child so young at home. I talked about how we worried all through my pregnancy, worried that lightening might strike twice and she, too, would be born with biliary atresia. Or something else ... one of the countless afflictions that can befall hapless children in their earliest years. Our nurse was curious, would we have chosen to abort the child if we knew she would be born with biliary atresia?** We shifted uncomfortably. Everyone knows there's no easy way to answer that question. I wouldn't want to put a child through what Annika has had to go through, just to live. I mean, we were watching our child breathe on a machine. Blood was squirting out of her bottom on an hourly basis, and when we lifted her to change her diaper, tears would roll silently down her face, out of pain or fear or confusion - we had no idea which. But is there any reasonable person who thinks that saying "yes" to an abortion is easily done, either? And I would never trade my Annika for a chance at a different, healthy child, which is how the question ends up sounding, in the end, to parents in our situation. I responded that, if biliary atresia were a genetic disease and we knew that there was a reasonably high risk (say the 1 in 4 chance that two carriers pass on a recessive gene), then we would take extremely strong birth control measures to avoid exactly that question. But I have known parents who decided to give birth again, even with the 1 in 4 chance of a genetic liver disease, and have explained their decision in terms I can respect.*** I would no more take away their choice to give birth than I would take away another's choice not to. I am constantly surprised by the strength and beauty in this strange world of childhood disease. The mother who lost her baby last week was certainly the youngest I've met at a hospital. I guessed her age to be 18 or so, but perhaps she was older. In any case, I gathered that her pregnancy was, at the least, unexpected. The family of the baby's father said, publicly, some of the most venomous things I've ever heard aimed at a young mother, and it wasn't clear how much social support she had otherwise. Yet there she was, spending her days mostly confined to a hospital room with her sick child, snapping photos of him like any proud mom, learning medical lingo, never complaining (at least not in public, and not to me), and never questioning the hard work she hadn't bargained for. Was I impressed with her commitment to her child, at an age when I most certainly would have sworn up and down that I wasn't ready to be a mother? You betcha. We all were. I guess anyone that knows me, or has kept plowing through the sad times with us here on this blog, knows that I think Annika is a child worth having again. That she's a child worth another million dollars of insurance money to keep her here with us. That a child who makes up a game called "The Evil Queens of Bad,"**** in the process convincing her little sister to shout, "I'm a baaaaaaad baby! RRRRRRRRRR!," makes for one beautiful life. [Oh, yes. She's baaaaaad, all right. She'll jump out of a shopping bag in a dark alley and knock you senseless with her overwhelming cuteness.] So, now, if you've muddled through my muddled ramblings, you deserve to break out the champagne with us: our reinsurer has given up. All services provided in 2005 will be used toward our 2005 benefit maximum, not 2006. This means that Annika has enough insurance coverage left in 2006 to sign a contract to get her re-listed for transplant. Can I get a hallelujah? ~~~~~~~~~~~~~~~~~~~~~ *But I did not read through every story on every page, so perhaps not all the accounts were as even-handed as the ones I read. ** Note that this conversation did not just pop up one day, we had been having substantive conversations with this nurse, one of Annika's regulars, for days. Please do not think that PICU nurses suddenly decide to ask parents tough questions out of the blue. *** Not all parents have done so. My first conversation with a mom who got pregnant after being told that she had a 1 in 4 chance of having a baby with the exact same (very serious) liver disease involved the mom saying after her second child was transplanted, "I don't know why God has chosen us, but He did." There are so many things wrong with that assertion that I don't even know where to begin. I'll just stop by saying that I strongly object to ignoring genetics in favor of Divine Intervention. **** I hereby give permission for any band to adopt the name, "Evil Queens of Bad." Rock on. And, in case you're wondering about the COTA account, we've decided to leave it up for, I think, obvious reasons. If Annika's shunt surgery had taken place in January instead of November, she would be hitting her limit in the next couple of weeks. I don't think we'll ever be insurance complacent again. But rest assured that the money donated does not leave the account except for medical expenses not already covered by insurance, and, if it never becomes necessary to use the money, the funds are distributed to other children in similar situations.

exploding heads

2006-03-07T23:18:00.000-06:00

This post should really be about Annika, and how amazingly, awesomely well she's been doing. Her gait is still off a bit, but she's gaining speed and is now bending her knees nicely as she moves. Just a bit of a penguin waddle is left to remind us how far she's had to come. And it seems to me that she's always leaning back a bit, as if she needs to counterbalance her bulging tummy (not that the bulge is fat - far from it - I think maybe it's still residual swelling, and maybe some fluid still sloshing about in there). She's able to get up and down the ladder of her bunk bed by herself, and she took her Big Wheel out for a spin last week during the much lauded Spring Weather Preview. She's been doing so well, in fact, that yesterday she managed to be downright difficult. It takes a lot of energy to be such a huge pain in the ass, you know. So I really should write a lovely tongue-in-cheek entry about the joys of misbehaving children. About how much independence and strength is exhibited when you tell your child, "No, don't put those galoshes on your feet. They are covered with mud and guck, and they stink." And your child responds by smiling sweetly and shoving both hands into the boots and running (waddling) around the house waving them in the air with the celebratory air of a baton-twirler leading off a parade. And then when you, it's true, yell, "Annika! What did I just tell you?" she responds with a totally unbelievable air of innocence, "What? You said, 'Don't put them on your feet'!" But really, even though scenes like that repeated 36 or so times that day (most of them playing out in far more banal fashion), Annika's behavior (and Frankie's enthusiastic joining of the whole "Hop on Pop"...er, I guess "Glom on Mom," melee) wasn't what made my head explode at the head of the day. It was the conversation Jörg and I had over the latest in insurance news that evening. Because the day was so long, and because the news was so hard to comprehend, we discussed it over dinner. Usually we reserve dinner conversation for lighter topics, like Annika's explanation of why her heart's fondest wish lately is to be magically transformed into a rubber doll, or Frankie's deeply held belief that my age is actually 15 ("Well, I used to be 15, but now I am 35." "No! You 15 years old!" said with all the disdain a 2-year-old can muster, which is an awful lot of disdain.) As I began to ask questions in rising disbelief, Annika jumped in: "What are you guys talking about?" asked, of course, with all the disdain a 5-year-old can muster, which would probably rival that of Queen Elizabeth, asked her opinion of Britney Spears' nipple slip after the Grammys. "Just insurance stuff, sweetie." "Well, can we not talk about insurance? Can we talk about something else? Like...princesses?" So we saved the rest of the conversation for after bedtime. Really, we have no idea what is going on, but it's clear that something is not quite right. And I don't mean the "not quite right" of denying coverage to a lovely, spirited 5-year-old (because that's, after all, what insurance caps are all about and I see that they have a purpose, from a business perspective, even if I think the whole damn system needs to be overhauled). I mean that something is really not right. The word on the street (the street of highly paid medical administrators) is that Children's is offering to re-run our bills at a higher discount than our insurance company has negotiated in order to stretch our coverage through 2006, or at least to have enough money to allow her to be listed for transplant. The only catch is that Children's wants to see, in writing, the part of our insurance contract that says that the annual maximum benefit is determined by the date bills are received, rather than by date of service (remember, this is what has gotten us into this whole surprising mess in the first place - many of the bills from November and December were evidently not received until January and therefore went into figuring our 2006 benefit usage). In other words, they want some contractual proof that denying Annika coverage is legitimate, before they go giving all sorts of discounts that our insurance company hasn't actually negotiated. It seems a reasonable enough request (and it's a request that Jörg himself made at the advice of the helpful lawyer/reader, Genevieve). But the request is being met with outright refusal. That's right - total stonewall. Which makes absolutely no sense, unless the contract does not, in fact, say any such thing. But here is where it gets very complicated. The way insurance is run in this country is already incredibly complicated, but the story of IWU's health plan reads like something Rube Goldberg would have created, were he inspired by the world of finance and business management. That's not to say that IWU's health care plan doesn't work -- it does, and provides better coverage in the least expensive fashion possible. But...it's complicated. The short version is that there are at least two different contracts in play here. One of the contracts is between Illinois Wesleyan and OSF health plans, our regular insurance provider. But OSF health plans is not passing out their own money when a claim is made; they are only disbursing the funds pooled by a group of small universities. But for any claims greater than $10,000 (i.e. perhaps 1 or 2 days in the PICU at Children's Memorial Hospital. Yup, that would be us.), the claim is passed to a reinsurer, which has its own contract with the trust, the group of people hired by the coalition of universities to oversee their healthcare fund. That's the short story, and I'm not even going to attempt the long one because my head is still a little bit exploded. But the fact is that, somewhere in this 72-layer-cake of contractual obligations, someone (we're guessing, anyway) has forgotten to actually specify how the annual maximum on benefits is figured. But it's not like we can just bounce around on our toes shouting, "Woot! We win, suckas!" Everyone is in a bad position here. Our insurance company can't really pay the bills, because the trust that oversees the funds is adamant that the annual maximum is figured by the date the bill is received, and it may in fact be true that this is the way they've always done it, and it may in fact also be true that they have a contract with the reinsurer that says that this is the way the maximum benefit is determined. But they also can't deny any bills, because there (apparently, anyway) isn't any such stipulation in the contract with Jörg's university. If there's been some sort of omission in the university's contract with the insurance company, or with the trust's contract with the reinsurer, we're not really sure who would be responsible for continuing to pay Annika's bills. Obviously, that's not the kind of money that Jörg's small university has just laying around. So we are kind of in insurance limbo right now. Or maybe insurance purgatory. The bills are neither being paid nor denied. Needless to say, I don't think "insurance purgatory" is an acceptable explanation for collection agencies, so we do need to get this figured out one way or another, and soon. Of course, I could have this all wrong. I'm just guessing right now, but that's pretty much where we are left since no one who actually has a copy of the contract is talking. So getting to go home last week was super-fantastic on so many levels. Right now we have no idea what the insurance situation is, and we can't even apply for the one public program we've found that Annika qualifies for until someone figures out whether she's hit her annual maximum or not. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Annika had her repeat labs today, so we'll find out tomorrow whether the vaccine theory was right or not. If her labs haven't gone down, we'll need to head back to Chicago this week for another go at solving the mystery, most likely with a biopsy. I think they're going to look better. She was way too sassy yesterday to be getting sicker. Meanwhile, I ran across a rather unfriendly reaction to our situation published on another website. I'm not linking to it because I surely don't mean to send lots of people there to complain on our behalf, but the points she made, at least the ones that weren't just factually wrong or mean-spirited, have been banging around in my head a bit, and I've been trying to think of a good way to explain and, more importantly, justify the kind of visceral protect-your-child-at-all-costs feeling that times like this inspire. I need a few more days, though. More productive would be to thank all those that have participated in the casserole campaign that PPB inspired or the raffles that Andrea has organized, thanks to the generous donations of lots of crafty and talented people, and to Badger, who auctioned off this lovely piece by her late husband on eBay to benefit Anni's COTA account. And to all those that have made contributions, and to those lovely people here in our town who have offered to help set up local events. All to ensure that, however it happens, Annika will continue to have access to the medical care that gives her a chance to keep being the girl that makes my head explode in frustration some days (and I want to add to that sentence, "and my heart explode with love every day" but I know that that is way over the top, even if it is true).

d'oh!

2006-03-04T10:01:00.000-06:00

We are back home. Annika's labs were repeated on Wednesday evening, on the off-chance that the rapidly rising enzymes were actually a lab error, but they actually came back even higher. So, no error. But the ultrasound showed no change from the previous study, meaning no new blood clot and her shunt is still open and functioning. Rejection might be another possibility, but, as Dr. Alonso pointed out, she doesn't have much history of rejection (the only really bad episode was when they completely stopped her immunosuppression to battle PTLD). And doing a biopsy is no simple matter for her, since they have to do a transjugular because of her bleeding issues (that's where they thread a needle through the jugular in her neck down to her liver and biopsy from the vessel). It could be something viral, but she is showing absolutely no symptoms of fighting a viral infection. Thus, no telling why her liver was suddenly looking unhappy in the bloodwork. But on the way home, happy to be headed back but still stewing over the unknown cause for the sudden jump in her numbers, I remembered that Annika recently received her 5-year vaccinations, including the live (but weakened) MMR. That might be enough to explain the sudden jump, although we've never seen such a dramatic reaction to vaccines before. We'll take that explanation, though, over any other. I wish I'd thought of it earlier. There might have been more sleeping going on around here. More to come on insurance updating and million-dollar-medical care, but right now I have a bedroom to rearrange.

dangerous things

2006-03-01T17:09:00.000-06:00

So all this worrying about Annika having another bleed, and the thing that's sending us back to Chicago in a very worried state of mind? Her liver, which has held up shockingly well so far. I took Annika for a blood draw Monday evening, and her liver enzymes have shot through the roof since last week. Her hemoglobin, on the other hand, which is the lab to look for if you're worried about bleeding, has actually gone up since last week (ummm, perhaps I should add that that is good, for those of you who don't carry binders of your child's labwork to follow trends - actually, I don't do that either, but I think it's a very good idea). Jörg and I tried to remember the last time her enzymes were this high (in the 500's, for those liver families out there who appreciate numbers), and we could only remember pre-transplant numbers like that (well, except for the numbers after any kind of surgery, when they go outrageously high and are generally to be ignored if you'd like to keep your sanity). We'll be heading for Chicago around 5a.m. Thursday morning for an ultrasound before seeing Dr. Alonso in clinic. Our nurse practitioner, Joan, said that Dr. Alonso was a bit worried about Annika's shunt, given that kind of a jump in numbers, although any kind of clot that cuts off blood flow to the liver could also be at fault. Or any of a million other things. Those labs, those numbers that we parents watch like highly caffeinated daytraders sitting in front of a stock-ticker, are just enough to get you all wound up and thinking crazy thoughts, but completely and utterly non-specific as to kind or severity of the problem. Of course, I'll be taking along two suitcases, one for Annika and me to stay at the hospital, and another for Frankie, who will go spend a week with our good friends, the Martins, for a week if Annika needs to stay. Right now, there's no space at the Kohl's House and, even if there were, I can't see leaving Annika alone in the hospital at night, and Frankie can't stay in the room with Annika. Frankie, I hope, will be having too much fun with the irrepressible Riley and Shelby to be too upset over the separation. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Annika's mood has just been outrageously good the past couple of days. Even going to get her labs drawn on Monday evening was like a little party. We listened, for the millionth time, to the Shrek soundtrack, and Annika sang along with "I'm On My Way" in an impressively authentic-sounding Scottish accent ("I'm on my weeeee!"). Between songs, I heard a huge sigh from the back seat. "I wish I could be older. A grown-up, like you." "You will be, someday." "No. I mean, right now. I wish I was old like you, right now or maybe tomorrow." Leaving aside the description of me as old, I decided to pursue this conversation, as I love it when Annika goes all philosophical. "So. Annika, why do you want to be a grown-up right now?" "Well...I could drive a car. That would be lots of fun." (Oh, yes. Annika driving a car. That will be lots of fun. As if we don't have insurance troubles enough right now. And I've become so accustomed to having her in my sight all the time. How will I ever be able to turn over a set of keys to her? Maybe some sort of spyware camera mounted to the rearview mirror?) "And I could put CDs in for music all by myself." (That's more like it. Freedom and responsibility mean that you can choose your own music! Those are the kinds of childhood daydreams that let a parent sleep well at night.) Then her voice got really excited, "And I could touch dangerous things." "Oh. OK." So there's adulthood, according to Annika: driving, putting in any CD you want to hear, and touching dangerous things. Mental images of knives, stovetop burners, electrical outlets, and all the millions of other more innocuous seeming possibilities for physical harm that surround us every day in our cozy home flashed through my head. How soon, exactly, do kids develop that taste for forbidden fruit? At 5, maybe 6 months? Or is it just that, at 5 years, she's already figuring out that risk carries the threat of injury, but also the thrilling prospect of great reward? We're not exactly a household of risk-takers, ourselves. Unless you count the fact that I use less than the recommended amount of laundry detergent in our washer, and I've never left conditioner on my hair for more than 10 seconds. Overall, we try to live life smack in the middle, far from the exciting edges where both lottery jackpots and financial ruin lurk just 2 hidden steps away. But, of course, then I realize that living life in the middle hasn't really saved us from the threat of financial ruin, anyway. Why? Because we decided to have kids, and one of them turned out to have major health issues, which eventually pushed us to the exciting edge of healthcare in this country. On one hand, we hit the jackpot, living in a country in which medicine is so advanced and available that our daughter has a shot at living her life for many years to come. And now we've gone to the other extreme, as well. Facing up to the possibility of financial ruin that can devastate a family living in a country without universal healthcare. I think every parent realizes that having kids is one of those "touching dangerous things" decisions of adulthood. Even if your children are born healthy and continue along their healthy lives, just having and holding and caring for these creatures means that you are forevermore vulnerable. That you will forevermore worry, every time they head out alone, without your protection. Even if heading out alone only means joining a class of other kindergartners, being led by the kindest-eyed teacher you've ever seen. There will always be that worry, and that inevitable pain, since we parents know that no one makes it through life unscathed. Taking on the care of a child is probably one of the riskiest things we do as adults, emotionally speaking anyway. And it's not like that risk ever goes away. I watch my own parents and sometimes I wonder if all this isn't even harder on them sometimes than it is on me. Not only do they have a grandchild that they worry about, but I know they hate to see me worry, too. Speaking of my parents, my mom called me a few days ago and let me know that Unidentified Fuzzy Orange Guy is thought to be a hedgehog. And, as I suspected, Frankie was the one who discovered Mr. Scary Sound and just had to have him. Yes, my mom said that she did know about the terrifying noises coming from his tummy, but she just figured that must be what hedgehogs sound like. I'm pretty sure my kids totally lucked out in the Grandma department. So wish us luck on our trip to Chicago tomorrow. So far, Annika is only scheduled for an ultrasound, not to be admitted to the hospital. I don't think we've ever not seen Annika admitted after an ultrasound, particularly in response to pretty horrible lab values. But my Pollyanna personality still holds out hope that maybe those yucky numbers were just a lab error. Hey! It could happen. p.s. I finally responded to the comments on this post. Sorry I'm so slow. I just realized that people actually asked me direct questions and such. I may actually get to my email inbox tonight, too.

wonderfully awful, awfully wonderful

2006-02-25T13:12:00.000-06:00

The sunshine over Illinois the past few days has been more than welcome. We've opened the shades, and the girls and I played together in the little squares of light that turn the floor into a gameboard, competing with the cats for the warmest spots. The outdoors, glimpsed through the large windows that convinced us to buy this house in the first place, looks so alluring that Annika has been asking to go to the park every day. Once we arrive, though, she only spends 10 minutes or so walking around in her stiff-legged gait before asking to go home again. I usually convince her to give it 5 or 10 minutes more, in view of the delight healthy Frankie is taking in discovering her new climbing prowess. Annika keeps asking what has happened to the leaves on the trees. Her sense of time, at 5 years old, is not that well developed, but I'm getting the feeling that she understands she lost a considerable chunk of her life to unconsciousness in the PICU. I'm trying to remember if the trees actually did still have their leaves at home when we left home after her bleed mid-November. I'm thinking that, yes, at least some of them still did, in all their autumn glory. How strange this must have been for her, going to sleep months ago with a strong body and lots of regular-kid energy and then waking up on all sorts of perception-of-reality-altering drugs with a gaping hole in your tummy. And then, when the drugs are finally done and your tummy finally closed back up and you're allowed out of bed, to discover that the body you've always known has been replaced with one incapable of even carrying you over to the toilet on your own. And, all the trees were bare. Still, Annika's personality has pretty much returned to her pre-medical-nightmare days. She hasn't had a day of non-stop crying jags for quite a while. I think that's due mainly to finally getting off the methadone. But I'm sure this wonderful stretch of 11 days at home also helps immensely. I actually had to look at the calendar to figure out how many days we had been home because somehow it felt like months already. So it's not only Annika's sense of time that's been skewed by the past few months, but mine as well. And it's not only the past that's affected, but also my sense of future time. Right now each day stretches before us in lovely long swaths of time, free of beeping pumps and medical tests to prepare for. Each day feels so long, like we have time to do anything we want to do. When Jörg came home from work yesterday, I corralled him into taking a walk with me and the girls to the park down the street. We loaded the girls into the green wagon with the ridiculous little door on the side that swings open. The sides of the wagon are low enough that even Frankie, with her chunky 2-year-old legs, can clamber inside easily. But both girls insist on using the "door" in an exaggerated show of kid-world civility. Jörg and I had a chance to talk about the future along the way. It's hard for us to find a chance for these important talks, as we don't want to get too much into things in Annika's earshot, but we're often so tired by the time we get the girls to bed that we don't have the energy for such exhausting conversations. At least, they're exhausting for me, since I would rather not contemplate the future. At least, not a future involving another transplant and more bleeds and more long-term hospital stays and maxed-out insurance. I have no problem talking about normal future things, in flat-out denial of the more likely state of future affairs. So, on our walk, I broached the topic of kindergarten for Annika next year. Applications are due soon for ISU's lab school, down the street from our house. We've heard great things about that school, and we'd always figured we'd try to get Annika into it, especially since I'm suspecting that she's going to need a little extra help to be successful in school. I explained all the advantages of the lab school to Jörg as we walked along, pausing occasionally to acknowledge the excited shouts of "Dog! Dog!" coming from the girls behind us, and swerving the wagon in response to the even more excited shouts of "Dog Poop! Dog Poop!" But Jörg seemed kind of surprised that I was even thinking about putting her into kindergarten, given the precarious state of her health. Knowing that the only factor known to set off bleeds is infection, even simple colds, and knowing that having repeated bleeds is only going to make it harder for her to gain the strength she'll need to survive another transplant, and knowing that kindergarten is typically a germ factory with the little germ workers passing off infections in an impressively efficient fashion, Jörg energetically set about bursting my "life might be normal soon, you never know" bubble. As Jörg relentlessly laid out all the reasons that it was supremely unlikely that we'd be sending her to kindergarten next year, I was grateful for the surprisingly loud noise of the wagon's solid plastic wheels grating along the concrete sidewalk, which made it impossible for Annika to hear our conversation. Although that same sound was not helpful with the frustration headache that the conversation brought on. My problem, besides my persistent Pollyanna personality winning over my occasional moments of pessimism, is my skewed sense of time. [note: Lately Annika's favorite game has been for me to tell "Princess Priscilla" stories, whose point is mainly to create a narrative with as many "P" words as possible. This game totally gets in your head. Do not try it at home, unless you want to find yourself starting sentences like the first in this paragraph.] Somehow it doesn't feel like months could have gone by since Annika was waving me off back to the car, apparently embarrassed that she still had to be walked through the preschool doors by a parent. And it certainly didn't feel like the start of kindergarten was only 6 months away. A lot can happen in 6 months, but 6 months is also the rough boundary given by Dr. Superina for the earliest time he might feel comfortable transplanting her. It's all a big question mark, but preparation for kindergarten seemed to Jörg like the most preposterous form of denial. ~~~~~~~~~~~~~~~~~~~~~~~~~~ Update on the Michael Moore discussion: It turns out that Jörg whipped off an email to the address given on his website the very weekend that we were first hit with the news that we were about to become effectively uninsured. I'm sure Jörg didn't pull any punches in the description of our ridiculous situation, in which November became the new January and the public aid office explained that Annika didn't qualify for the usual programs because she was still insured even though that insurance would pay no more claims until January 2007. But he's been careful not to blame his employer, Illinois Wesleyan University, for our woes. The university community has been very supportive and sympathetic. The university's president called Jörg almost immediately and assured him that he would look into any avenue he could to help us, and 2 of the 3 local volunteers that have stepped up to help us with running the COTA campaign are from IWU. It's not even our insurance company that's to blame, since the decision is coming from the reinsurer, Lloyd's of London, the company hired by the board of trustees for the consortium of small colleges which pools funds to spread the financial risk of insuring employees. The fact of the matter is that it's hard even to know what to say about this situation. It's hard for Jörg to meet with the financial officers of the university and explain that we've run through a million dollars worth of medical bills in just a few months, and, hey, we need more! Those kind of numbers are just unfathomable. In trying to figure out how the hell the bills could have gotten so high so fast, it's clear that it's at least partially because Children's charges us, the well-insured, at a much higher rate in order to offset the cost of all the pro bono care and services provided to the uninsured who come to the hospital. The net effect, of course, is that we have ended up being pushed into the charity care category ourselves. When I try to follow all the twists and turns in the reasoning that our current health care system requires, I end up feeling like a puppy chasing my own tail. I think there's little doubt that our health care system as it stands right now is not sustainable for those who have insurance, and is (obviously) failing miserably those uninsured. But I'm also worried that the sorts of health care reform being pushed by the current administration is only going to make matters worse; a point explained by Jane Bryant Quinn in this week's Newsweek. Frank commented that bringing Michael Moore into this discussion of our insurance disaster could be offensive to those who find Mr. Moore akin to the slime of a slug crawling across a giant field of doo-doo on a very hot summer day. While it's true that my generally diplomatic nature seeks to avoid offense, it's also true that anyone who is trying to shine on a light on the ludicrous nature of our current healthcare insurance system in this country is doing good work, as far as I'm concerned. And while it's also true that my own sense is that more is accomplished with calm and reasoned discussion than with in your face, sucker! pie throwing, I'm glad that Michael Moore is out there throwing pies. Just in case I'm wrong. (And I would also add, but only parenthetically because this is either a really stupid thing to say or else a tiny nugget of wisdom - you be the judge, that if a complete idiot like Pat Robertson, say, suddenly decided to make universal healthcare his pet project, I would heartily congratulate him and offer up our story as an example for his use. Because even idiots can get it right sometimes, and losing sight of that is no small loss.) And speaking of idiocy: The phone rang 2 nights ago. Jörg had both girls piled on him, so I answered. It was obvious from the background noise that I was getting a call from a telemarketing center, but it turned out that the caller was following up on a survey sent to us concerning our care at Children's. Always one for participating in the world of research and helpful feedback, I answered her questions as thoughtfully as I could, although I had no memory of the letter "sent a few months back" that she kept referring to. "Well," I explained, "the letter may have gotten lost in the shuffle, since Annika's been inpatient for the past few months, mostly in intensive care, so, you know, some mail probably got lost in all the chaos." Suddenly it occurred to me that I hadn't heard any keyboarding noise as I answered her questions, no indication at all that my thoughtful answers were being recorded in any way. And, finally, it hit me. "Are you getting ready to ask me for a donation to the hospital?" "Well, as you may know, Children's is a not-for-profit organization and relies..." I interrupted her, "Wait. We've just been handed over a million dollars in bills from Children's and hit our insurance max and are having to fundraise ourselves just so that we can continue to get medical care for our daughter without declaring bankruptcy and you'd like more from us?" Wow. I mean, I love Children's. I love the nurses, the doctors, the child life people who keep coming back to see Annika even when she's in a rude mood. And I know they take on expensive care for lots of kids whose parents have absolutely no way of paying and that they are worthy of donations. But, the timing. I mean, really. The past couple of evenings have seen me making what may be the cutest home movie, ever. I finally got around to gathering together the clips I took of Frankie and Lauren dancing together at the Kohl's House in Chicago around Christmastime and running them through iMovie, adding a soundtrack of Devo, Superchic(k), Cathy Fink and Marcy Marxer, Kate Campbell ("When Panthers Roamed in Arkansas" - what a title; what an opening hook), and Jack Johnson. I would post it, just out of my insane parental pride which assures me that, sure, everyone would be interested in seeing 10 minutes of my child twirling, covering her mouth in mock surprise at her own cuteness, tipping over, and then laughing, fetchingly, at herself and Lauren. But I have the feeling that a file that big might tax the generosity of IWU, which already allows me a free account for all my other (much shorter) home movies. So you'll just have to trust me that it's adorable. Instead I'll post this little gem. The first night Annika and I were back home, Frankie was very excited about me putting her to bed. Before we went upstairs, Frankie insisted that we find her favorite snuggly, a puppy, for her to hug through the night. Of course, after being away for so long, I had no idea where Puppy might be. So I just looked around for an acceptable substitute, and my gaze fell on this little orange fuzzy guy, evidently a new toy from my mom and dad. His rotund shape left it rather a mystery as to his exact identity, but when I picked him up he at least fit the requirement of suitable softness. I stuffed Unidentifiable Orange Fuzzy Guy under my arm and picked up Frankie. Unidentifiable Orange Fuzzy Guy got squeezed between my body and Frankie's, and that's when we accidentally activated his sound box. Can I express my shock without being unnecessarily offensive? Probably not. Let's just say that I glanced around the living room, just to make sure I hadn't suddenly fallen into a SNL skit poking fun at wildly inappropriate kid toys. Needless to say, I put Frankie down and spent the 10 minutes it took to track down Puppy. (But, mom, Frankie does love Unidentifiable Orange Fuzzy Guy, and I know that's what really counts.)

aliens, rusty social graces, universal health insurance, and a "no stalking" promise!

2006-02-21T12:45:00.000-06:00

Just a bit ago I wrote that I laughed at the idea of contacting Michael Moore with our story of insurance woes. What I meant was that I had a moment of dark humor when I realized that, in comparison with the type of stories Mr. Moore was likely uncovering, our story was likely relatively tame. When I read that comment, I remembered Badger's own recounting of her attempts to fill a prescription and find help to pay for medical care for her husband's liver cancer. I also remembered my long-time friend, Karen, telling me with a sort of comic bemusement born of shock about the sense of freedom that came with lack of insurance coverage as her husband battled cancer. "A private room? Sure! Why not? We can't afford any of it anyway, so we might as well not afford the best, right?" Karen was a public-school teacher and her husband, who died several years ago, was a cop: the type of people whose public service careers might have been supposed to carry a health-care safety net supplied by that same public. Not so. So here I am, some two weeks later, and I'm not laughing any more. The more I think about it, the more it seems to me that stories like ours should scare the hell out of people. It's scary because it seems so unlikely. Jörg and I were so sure that we were among the lucky few with top-notch insurance coverage. And you know what? We really are. I've often discussed our insurance coverage with others at the hospital, and the reaction is almost always, "Wow! That's great insurance." So if something like this can happen to us, you'd better believe it could happen to pretty much anyone. Here's what I mean (and if you will be bored by my droning on about our financial doings, please feel free to skip down to the next section, marked of by the squiggly lines): Each person covered by our insurance has a 5-million-dollar lifetime maximum. This, in itself, makes our insurance better than most out there, especially when it comes to caring for a child, like Annika, requiring a lifetime of expensive medical treatment. When Annika was listed for transplant the first and second times, our insurance company passed the management of the medical bills over to a company devoted to managing transplant expenses, and nearly everything was covered at 100%. When some bill was denied, such as the time that the insurance balked at covering the rental of a blood pressure machine for checking Annika's BP when she was started on a new med, Jörg was able to call and work it out. Not without much effort and wrangling, and likely at the expense of his own blood pressure, but still he was able to do it. That company managed Annika's bills until she was one year post-transplant, when we reverted back to our original insurance company's coverage. We had to adjust to life with far more co-pays, but still we felt lucky. Jörg used his flex account at work to set aside a portion of his income pre-tax for medical expenses. We had no idea how much we would be using, so he started at something like $1,000, and started keeping our receipts for out-of-pocket expenses, not including our insurance premiums. To our shock, we ran through that amount in just a few months (I think it was 3). Jörg has increased the amount he sets aside each year since then, and I don't think we've ever made it past 6 months before we've run through all that money. None of this should have been a big surprise to us. I mean, we had a little girl born with liver disease which requires a liver transplant 75-80% of the time, which means a lifetime of expensive drugs and an increased likelihood of frequent hospital stays. This all adds up to a good portion of income going to medical expenses, despite excellent insurance coverage. But Jörg and I both took a rather stoic view of the situation. We had given birth to a baby with major health problems as a result of some cosmic lottery that we lost (biliary atresia, Annika's disease, is completely unpreventable, in that doctors still don't know the cause of it). We loved her; we adored her; we would change our lifestyle expectations however we needed to in order to care for her. My plans to return to work, searching out a rewarding career once our children reached the age of 2, the boundary we set pre-pregnancy, became more unlikely, as we figured that one of us would need to be able to stay with her in the hospital for possibly long periods of time at pretty much any time, at a moment's notice. Not exactly the kind of lifestyle that meshes with most career choices. And, true enough, there hasn't yet been a year without considerable hospital time. But even as our medical expenses have risen, and my options for bringing in my own income have disappeared, we still felt like this was simply the life given to us to live as responsibly as we could. We had the bad luck to have a child whose health issues taxed us emotionally and financially, but we had the good fortune to have a child with an amazingly sunny disposition, as well as a relatively secure job for Jörg with a steady, respectable paycheck each month. Jörg, the very paragon of German fiscal responsibility, made sure we met our bills each month, and together we prioritized our list of purchases. We were careful to make sure that our spending did not outstrip our income, or at least not without a plan in place to pay it back as soon as possible. So, for example, I waited several years to buy a digital camera, and, when I finally did, we set a price limit that had me shopping in the "budget cameras" section of cnet, and I'm still using that camera (enthusiastically) 3 years later, despite some alluring new ones out there that have fueled some late-night computer screen shopping (is that the new tech equivalent of window shopping?). We decided against getting a minivan when Frankie was born, mainly because, even used, their prices were so much higher than sedans with the same features. We set our thermostat at 64 at night, 66 during the day, and hope for sunshine. And I don't write this to imply that we have denied ourselves in order to pay Annika's medical expenses and, Oh, Poor Us. Far from it. After all, having a digital camera and a non-minivan car and a lovely house in which to turn down the thermostat already puts us into the category of comfortably situated. I write this to make the point that we are the type of people that have followed every single bullet point written in every single article on maintaining financial health ever published in Time, Newsweek, and U.S. News and World Report, combined. So we never even considered fundraising. Many, many transplant families we know do fundraise, because, even with a good salary (even with two good salaries for that matter), the costs associated with a transplant (even with insurance) can be daunting. For those families whose jobs are less certain, the financial uncertainty of raising a transplant child is enough to overcome, quickly, the reticence with which most of us view the idea of soliciting help. It takes a village, and all that...but who wants to ask the other villagers for money? And, you know, we shouldn't have to. If a family, making undeniably good financial decisions, with excellent insurance coverage, can still face financial ruin because of insurance shortfalls, then it is certainly time for a change in our insurance system in this country. The system is not working, even for those who are in the system. And, obviously, there are millions of people who are not even in the system, in worse shape than we are. (There. I said it, Andrea.) ~~~~~~~~~~~~~~~~~~~~~~~~ So my week of silence here on this page has been a week of non-stop work around our house. I put my mom on a train back home to Kansas City last Tuesday morning, after my dad called and said that he was having chest pains and skyrocketing blood pressure. While Annika was waiting in the hospital for transplant last time, my father had a heart attack, alone at home. With that memory in mind, we had my mom packed and on the train just about an hour after he called. My dad was fine, as it turned out, but it was high time for my mom to have a break at home, anyway. She's been here watching Frankie for the past 3 months, and that's a long time to be away from home. Of course, without mom watching the girls, the unpacking and cleaning of the house slowed down to mom-with-two-young-kids pace, which is very slow, indeed. Add to that the fact that Annika needed to see her pediatrician every day last week to monitor her blood pressure and heart rate, plus an exhausting trip to Chicago and back during torrential rain last Thursday, a trip to the ER to check on her suspiciously infected looking PICC line (which then fell out, yes fell out, while she was sleeping on the way back home), and the general exhausted malaise which inevitably follows a stressful period, and thus you have the lack of updates in this space. Finally, though, the house is cleared of boxes and suitcases. The pile of laundry no longer towers over my head. And I have a small suitcase repacked with clothes for Annika, Frankie, and me, all ready for emergencies. Life around here again has some semblance of order. The good news, which you may already have caught two paragraphs ago, if you were reading between the lines, is that Annika did not have to stay in Chicago last week. Hooray! We're going to take all the at-home time we can get. Her hemoglobin has been steadily declining, but not at the rapid rate of an acute bleed. So I'm guessing that we'll probably be heading back for a transfusion at some point, even if she manages to avoid another acute bleed. This is a scenario that I could live with, just going in every once in a while for a transfusion, but no more of those heart-stopping bleeds. I could live with that. Meanwhile, Frankie has been enjoying having everyone altogether again at home. I've already been back home long enough for Frankie to take the lovingkindness of a mother for granted once more. Last week we settled in for an evening snack of cheddar and apple slices. I gave myself two slices of cheese and Frankie only one, given my adult status. Frankie had a good look at both our plates, then stuffed her entire slice of cheese into her mouth at once. Cheeks bulging, she reached over and grabbed my two slices. As I gave her a look she had no trouble interpreting, she deliberately finished chewing, swallowed, and then reached down and broke off a microscopic speck of cheese and handed it back to me. I held up the tiny speck of cheese for Jörg, who was silently observing this scene. "Do you see what she gave me?" I asked him. Frankie beamed me a smile and chirped, "OK! You're welcome!" And Annika, having spent long hours with me in a tiny hospital room, has no trouble giving it to me straight. Driving to the hospital for labs last week, the girls and I were bouncing along to the mix cd I made of German music. Like any good child of the '80s, I sang along with real verve to Nena's "99 Luftballoons." After the first verse Annika informed me, in all earnestness, "Daddy's German is much better than yours." That mix cd, by the way, is a real hoot. I was looking for some German music, figuring that might be the way to get Annika and Frankie excited about learning their dad's native language. This was my high school German teacher's approach, and she frequently broke out her guitar mid-lesson. Inspired in theory, it fell a bit short in execution, given that Mrs. Daniels had us singing things like "Where Have All the Flowers Gone?" auf Deutsch. Not all of the songs on the cd are actually in German, but they are all from music purchased in Germany, including a German equivalent of a Disneymania cd, Toggo 9. The Toggo collections are notably European in that most songs feature a beat suitable for dancing your ass off at 3 a.m. and includes songs like the one that samples Elvis Crespo's Suavemente and features a lusty call for "Una Cerveza!" in a most un-Disney-like fashion. I originally purchased the cd because it listed the Kim Possible theme song performed by a German group, and we do love our Kim Possible music around here. "Fun!" I thought, "I wonder what the Kim Possible theme sounds like sung in German?" Of course, it turned out that the version on the cd was just the English version, sung with a German accent. I discovered on another cd such English gems as "The Pirates of Dance" (sample lyric: "We're gonna take you to another place/Where pirates dance and come from outer space!" My unofficial survey of German music aimed at kids finds a surprisingly high number of songs involving aliens ). Still, I recommend these CDs highly if you're looking for something to complement a toddler sugar high and missing your bygone clubbing days. ~~~~~~~~~~~~~~~~~~~~~~~~~~~ So now that our house is again navigable, it's time for me to get down to my social responsibilities. Like the many, many thank you's that I owe, starting with the neglected note to Ralph for his hospital concert way back in September (for which I planned to include a cd with the little movie of Annika's reaction post-concert) and going all the way up to my friend, Jane, who painted and decorated the plain, white walls of the girls' playroom as a welcome-home surprise for Annika*. And I'm going to have to contact COTA to get a list of the on-line donors to Annika's newly-established fund. I'd really like to send a photo and note to everyone who sent Annika a card or cd or book or snuggly or craft project while in the hospital, and I did my best to hang on to return addresses in a plastic bag during our stay. But I fear that between the various moves among hospital rooms, Kohl's House, and home that I might have lost track of some of the addresses. Is it horrible to ask everyone to email me their address, so that I have an organized place to keep them? I promise not to add your address to any mailing lists or use it to track you down and stalk you, because who has time for stalking anymore?

who's your sunshine?

2006-02-14T21:27:00.000-06:00

Ahhhhh. It's been good to be home. Annika has been eating better, and smiling more. And Frankie, my little Frankie, she has changed so much just in the past few months. It's funny, because I'm usually all over my kids, every single second of the day, which means their growing is really a gradual process, no matter how much I moan about it happening too quickly. But now that I've been away from her so long, the changes are overwhelming. Like I must have missed a few steps leading up to these amazing accomplishments. And, no, I'm not going to go on more about the fact that she can operate doorknobs now (But, man! Could she even reach them when I left? Much less grasp the slippery circumference with enough strength to hold on and turn?) Mainly, it's little stuff. Like the fact that she constructs these long sentences with careful and agonizing effort to make sure no words are dropped, no matter how insignificant, sometimes rewinding and repeating the sentence with emphasis on the missing part. "I not going to upstairs to take a bath!......I am not going to go upstairs to take a bath!" Annika just watches Frankie now, with this amused grin on her face, like she, too, is surprised to come home and find this willful creature in place of the baby she expected. Annika announced the other day that it was time for Frankie to become a big sister, too. Like it was a rite of passage that she deemed Frankie now worthy of. To my pronounced, "Oh, really?" Annika rushed to assure me that it didn't have to be immediate, but perhaps when Frankie turned 3. When I explained that Daddy and I didn't really think now would be a great time for a baby, without going into any explanation of why the timing was bad of course, and, besides, we kind of liked having just two girls, Annika generously offered to have the baby herself. Jörg, always one for keeping it real, broke the news that Frankie would then be an aunt, not a big sister, but Annika's skeptical look pretty much ended that conversation in a draw. The day after I posted my thoughts on relocating the cats, I found myself chasing Frankie, trying to corral her into the bathroom for the nightly hands/face/teeth cleaning. Frankie was squealing, running about half-clothed, clutching one of those magically disappearing juice bottles for her baby doll, and generally exhibiting better evasive maneuvers than I remembered of her. Hepburn came up the stairs to investigate the commotion and ascertain whether any tuna might be spilled in the ruckus. Frankie heard Hepburn's tuna-beseeching mew, and stopped the chase to proclaim, "It's my friend, kitty!" Jörg explained that, despite the scratches and run-ins of late, that was the only way Frankie referred to Hepburn now, "My Friend Kitty." I took advantage of the distraction to scoop Frankie up and head for the bathroom. Frankie, oblivious, twisted over my shoulder to beam at Hepburn and proclaim, "Her my sunshine!" As in, please don't take my sunshine away. So I'm thinking she won that one without even trying. Then Frankie turned back around and cheerfully shoved the doll's magic juice bottle right up her nose. A-ha! The total aversion to bottle-feeding as a baby? Mystery solved! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Things are moving ahead with Annika. We've heard that she's been approved to be relisted for transplant, so I suppose that she should be officially on the list very soon. Of course, her surgeon still wants to wait to transplant her until she's stronger and has had more time to heal. But it's good to know that all the paperwork is in place should her situation change rapidly. Tonight we had to change the dressing on Annika's PICC line. It's actually a Power PICC, and so goes into a larger vein than usual. All her lower, smaller veins were completely destroyed from overuse. The placement of this line is insane. It's right in her armpit. Good luck getting a good occlusive dressing in a place like that: all hollows, curves, and bends. To solve the problem of securing it, the IR team went a little crazy with the white tape. And this was not the white silk tape, which releases from the skin with moisture. No, it was the white tape that is the medical world's equivalent of duct tape. It doesn't come off skin without much tugging and gnashing of teeth. And I don't know what the IR team was thinking when they taped this particular PICC line, but it honestly looked like it was Bring-Your-3-Year-Old-Nephew-To-Work Day and they had let little Buster go wild with the tape. That tape zigged; it zagged; it crossed over itself, several times, in completely unexpected ways. By the time we got it all off, there was a ball of tape on the floor large enough to headline a roadside attraction in western Kansas. Needless to say, Annika did not enjoy the experience. She decided, at 6 p.m., that she had had enough of this particular day and requested that we put her to bed. Frankie made sure that she stayed out of sight, just in case we got any big ideas concerning an early bed time for her, too. After just one story Annika snuggled into bed and fell to sleep pretty much right away. Frankie, on the other hand, negotiated and procrastinated until past her bedtime, clambering up on my back and asking for a "Piggy Ride." (And Jörg has been so wise not to jump on that little opportunity for humor.) The contrast reminds me how sick Annika still is, but she did have a very busy day. The morning started off with more letter and package-opening from our backlog. I just saved her letters and packages until she was feeling like opening them herself, and thus we had the joy of a little postal time-machine, courtesy of Christmas cards and a lovely set of antlers provided by Bettie Bookish to accessorize the morning's festivities. Then we headed to the ped's office for blood-pressure and heart-rate checkup, and then off to the hospital's outpatient lab, staffed by the friendliest phlebotomists around. We returned home just in time for a Valentine's delivery from the Minnesota liver crew, Marisa, Carson, and Sami and Kyle: a cookie bouquet loaded with those much-needed calories to combat Annika's 4-kilogram weight loss. Annika just kept muttering to herself, "Cookies on a stick!" in a will-wonders-never-cease type voice. Top off the day with a surprise visit from her good friend, Kelsey, and you've got one exhausting list of activities. So, sleep well, Annika. You deserve it. P.S. Annika's COTA account is set up now. You can access it by going to this page and selecting "Annika Tiede" under the drop-down menu under Donor Designations. There will be a more detailed page put up about her soon on the COTA website.

oops, rambling

2006-02-13T08:43:00.000-06:00

Oh boy. I just re-read my latest posts, and I was rambling a bit, wasn't I? Shock, I guess. Sorry, though, for all that repeating of myself. Over and over and over again. We're on a hospital vacation again! Only this time I told them, "How about we skip the Kohl's House step-down and just go for the gusto? How about all the way home?" Everyone seemed to be on board with that idea, and Annika was more than just on board with it. She asked me every hour, on the hour, (OK, not at night) for two straight days whether it was time to go home, yet. I was particularly happy to be heading home, since my little Frankie was clearly having a rough time. My mom told me that she wasn't sleeping very well and that she had had several mishaps through the week, including falling out of her booster chair and having a run-in with the cat (The cat won the battle but lost the war, since my mom made the cat stay in the basement for the rest of the day for bringing her claws way too close to Frankie's eye. Don't worry, cat lovers. Hepburn had food, water, litter pan, boxes to play in and balls to bat around, but it was quite an indignity nonetheless.) When I called home on Thursday, just two days after our difficult talk with Anni's doctors and the same day that we found out about the insurance crap (hitting the fan and all that), Frankie broke my heart by refusing to return the phone to my mom and wailing into the receiver, "I want you baaaaaaaaaack! I want you baaaaaaaaack!" She dragged out the vowel of "back," and pronounced it "ah," as if grief had turned her into an upper-crust Englander all of a sudden. So I knew it was high time for both girls to have everyone at home again. Unfortunately, just 15 minutes before Jörg was due to arrive to ferry us home, Annika's main doctor decided that perhaps she should stay in Chicago after all. They had started her on the new med to help control the bleeding, propanalol, which is a common blood-pressure medicine. But Annika's response to the drug had been mixed. It appeared that her blood pressure had lowered nicely in response, but her heart rate appeared to have actually increased, the opposite of what is expected (and wanted). Feeling like a lousy, rebellious parent, I said, "Really? Are you serious? I don't think we can do that. Not really." I mean, Annika has had way too many promises broken over the last few months. At some point she's going to stop believing us at all. One solution, I suppose, would be to stop making promises, but really that is the only way she gets through everything. Knowing that there is always an endpoint in sight, just one more day or maybe two, allows her to keep her spirits up. So we made a deal. We brought Annika home, but agreed to take her in to her pediatrician every day to have her blood pressure and heart rate checked and reported to Chicago. On Tuesday she'll go to the hospital here to have labs drawn from her PICC line. On Thursday we'll head back to Chicago, with the understanding that they may want her then to simply stay. This way, at least, I have a chance to pack for a more long-term stay, and I can arrange to bring Frankie along, so that I'm not missing out on things like, for example, Frankie learning to operate a door knob (heaven help us all) and she's not missing out on having a mommy to tuck her in at night.

Warning: not so interesting thinking out loud stuff to follow. Also a shameless feeler to see if anyone is interested in taking on two cats.

I'm going to need to figure out, too, how to give my mom a break. She's suddenly spending her retirement caring for a 2-year-old. A 2-year-old that can operate door knobs (heaven help us all). I think that, as long as Annika is not in the PICU, we should work out how to keep Frankie in Chicago with us. Other moms do it, so surely I can, too. And I need to figure out what to do with the cats. I think Hepburn's unprovoked attack on Frankie was probably linked to irritation at the upheaval of the household, but perhaps also due to illness. I've been suspecting for a while that she is maybe becoming diabetic, or maybe her thyroid is just going nuts. It's just such strange behavior for her, since she and Frankie have been really very good buddies. Either way, we need to give her more attention, and I'm worried that she's not getting what she needs. Hepburn is no youngster, 15 years old, and I've had her for 14 of those years. But I'm thinking that we should look into better homes for her and her young buddy, Redster, the furball cat who only likes women with soft voices. The only problem is that most really devoted cat lovers already have cats in the home, and Hepburn is such a competitive spitfire, even in her old age, that I'm sure she'd stir up some trouble. And probably come out much the worse for wear, given that she's a tiny little thing. Still, if anyone happens to know someone who's just been waiting to lavish some serious love on two cats, let me know. Don't worry: I'm not holding my breath on this one. And I also know that we'll be able to care for the cats. It's just that I'm worrying that perhaps they would be better off with someone not living life two seconds from crisis mode all the time. ~~~~~~~~~~~~~~~~~~~~~~~~~~ Regarding the COTA account for Annika, I'm hoping that we will have it all set up by tomorrow. Jörg just called to tell me that Children's is faxing in the patient paperwork to them this morning. I do appreciate the calls to simply put up a paypal button, and I know that would be easy and quick to do, and I appreciate that so many of you trust that any money collected will go toward Annika's medical care. But my skin is way too thin right now to withstand even one comment suggesting illegitimacy. ("Right now?" I can hear you laughing, Jörg. And, really, now is not the time!) So for the protection of my own mental health, we'll give COTA a chance to set this up for us quickly. They seem to be very responsive, so I bet they can do it.

confession

2006-02-11T20:14:00.000-06:00

Sending off a thank you to Andrea to thank her for her amazing organizational skills, I finally expressed the reservations that make this all so hard at the same time that it inspires so much gratitude. And it occurred to me that it's worthwhile noting my reservations for the record. I feel a bit guilty about this idea of fundraising. I mean, I know we can't afford 3,000 a month without going into some serious debt, and I know that this whole situation has left me feeling seriously uncertain about whether or not we will always be able to pay for the care Annika needs, but I also know that there are many more kids out there with families in even more dire situations. So I'm simultaneously relieved that so many people have made such generous offers and also embarrassed a bit, as if we've made a claim to hardship that is not ours to make. Anyway, I would be crazy not to be seriously grateful. And I am. Grateful, that is. Not crazy. Or only a little crazy, anyway. Now to ask for another favor while the asking is good. The reason that setting up a COTA account is not immediate is that we need not only paperwork filled out by Annika's doctors to confirm her legitimacy, but we also need to enlist 3 volunteers to run the campaign. The volunteers include a campaign coordinator, a media coordinator, and a trustee. We haven't yet received the paperwork describing in detail these positions, but basically the campaign coordinator runs the show, the media coordinator makes sure that the events are publicized, and the trustee ensures that donations are accounted for properly and that funds are only given out for approved expenses with receipts and all that. I have a friend back home with experience in public relations who has already volunteered to be either the media or campaign coordinator (Thank you, Jane!). So that leaves two positions we'll need filled before we are up and running. I'm assuming that the campaign and media coordinators should be local, and I know that some of our friends back home read this journal, so I thought I'd throw it open to see if anyone has the time and energy to volunteer. It seems reasonable to me that the trustee for the account wouldn't necessarily need to be local, in these days of electronic transactions, although some of you COTA vets out there might have different advice. I do know that the trustee cannot be any member of our family. So if there's anyone out there that feels like they might have the time to take on any of these positions, please drop me a line at moreenaATgmailDOTcom. I feel like Andrea, who has already made this page, and Phantom Scribbler, who is hosting this discussion, have already created their own positions of web publicists/coordinators. Geez they are fast. And effective. Please know that we are trying to go about this in a way that is financially responsible, so that everyone can rest assured that this money is only going to approved expenses that are not covered by insurance (so for instance, there would be no double-dipping, "paying" for anything that is already being paid for by some sort of coverage). I think that COTA asks the transplant center to estimate what sort of goal should be set for fundraising. COTA's usual policy is to distribute any unused money to other children's COTA campaigns. I'm not sure what happens if the fundraising actually exceeds the goal set, but I'm thinking that a good idea would be to donate any excess to the American Liver Foundation's Biliary Atresia Research fund. Biliary Atresia is the liver disease Annika was born with, and it affects about 1 in every 15,000 babies. The cause of the disease is unknown, and there is no cure short of liver transplant, which obviously brings its own set of difficulties. Tanner's mom, Stacy, gave me this idea, and perhaps the funds could be donated in memory of Jayli, a beautiful BA baby that many of us still miss. So that's what I've been thinking, here in Chicago. The snow falling today was really floaty, and Annika loved the site from her 6th floor window. Now that it's dark and she can no longer see the snow, she's indulging her new addiction, Pokemon movies. Oy. She is so the daughter of a computer scientist.

a little feng shui here and there

2006-02-11T16:19:00.000-06:00

Annika is doing fantastic. So far, eating has not caused the bleeding to resume. She's shown more interest in the world over the past few days than I've seen from her since before her shunt surgery back in November. She still can't get out of bed by herself, but once she's out she is more confident on her legs. Today she rearranged the room more to her liking. The first thing she did was find the paper on which we had written her name in pearlized paint and tape it to her door. "So Beata knows my name," she explained, referring to her nurse today, who's been taking care of her since she was a baby and thus supremely unlikely to forget her name. Then we got out several of the heavy hospital blankets and made a "picnic area" on the floor. (Although when lunch arrived and I suggested we eat it on the picnic blanket, she had to explain to me that, no, you don't have picnics with hospital food. It has to be food that you bring from home, of course.) Then she found a better place for the shoots of bamboo that the hospital garden lady let her "plant" and keep to celebrate Chinese New Year. Finally she dug out her Cinderella lithograph that she got from Irma at the Kohl's House (donated leftovers from Best Buy's Cinderella promotion a few months back). She gave it a position of prominence, and then located my little book light that I use to read at night after Annika's gone to sleep. She turned it on and positioned it to cast a warm glow up on Cinderella. Yes, accent lighting. This is what comes of watching HGTV (Home and Garden Television) non-stop while nursing your baby. It's like this stuff is ingrained somewhere in her sub-subconscious. I fully expected her to turn around and proclaim, "See how it makes the colors pop?" Or something similarly Christopher Lowell-ish. Then she snuggled in to the pull-out bed/chair provided for parents, with pillows stacked up higher than her head and surrounded by her current set of hospital snugglies. I saw that she had stripped her Groovy Girls of their Groovy Clothes and stuffed their legs into the latex-free hospital examination gloves. That touch seemed a bit daring, even for the likes of Hildi back when Trading Spaces was still fun and full of low-budget thrills and chills.* She's been eating more, although I'm having trouble getting anything but Pringles into her. She used to call this treat, "Mustache Chips," in honor of the impressive handlebars on the man gracing the front of the can, but now she's moved on to calling them "Pringleschnitz" for some reason, demonstrating beyond a doubt that she did pick up something from her trip to meet the German side of her family last Spring. ~~~~~~~~~~~~~~~~~~~~ The weekend has called a halt to our insurance wrangling, although Jörg is expecting a phone call from the university's president, who is currently on the road. Otherwise, some of the initial shock has worn off. When Jörg first called me to say that our insurance company was estimating that we would hit our limit on Monday, and that we weren't eligible for the program that the transplant financial coordinator recommended because we had only hit the yearly max and not the lifetime max, I had visions of bills for 10's of 1000's of dollars rolling in daily for the rest of the year. It was overwhelming, to say the least. Now that we know that there is another option for coverage available, albeit an expensive option, I'm feeling a little better that we can somehow solve this problem. Plus, all those amazing offers of help have me feeling buoyed by a safety net that I didn't even know existed for Annika. It's pretty amazing. So we'll enjoy this weekend and jump back into the fray on Monday. We'll put up a link to the COTA account once we have it set up. We need to get forms filled out by the doctors here in Chicago, so that COTA can confirm that Annika actually exists and has the medical condition that we claim she has. All part of their effort to keep it legit, which I appreciate. I hope that we can have everything taken care of by maybe late next week. *I know, neither of the designers I mention does a show on HGTV. The point still stands, though.

a rather boring account of our current workings

2006-02-10T16:06:00.000-06:00

Thank you, thank you, thank you for all your offers of help and suggestions for strategic planning to make sure that Annika's care is still paid for. And I lapped up the sympathy like a kitty happening upon a spill of tuna oil. Jörg has been all over this situation. He's in a good position, since he is the chair of the committee that negotiated the insurance plan last year. So he really does know the ins-and-outs of this area. The problem is that none of the contracts that we or the university were sent said anything about figuring yearly maximums according to the date billed, rather than the date of the service itself. This particular contract was made between our insurance company and a reinsurer, which is used to handle large claims, and we've never actually seen it. Jörg did contact an insurance attorney, as well as the Illinois insurance commission and various other places. Basically he burned up the telephone lines tracking down every possible lead. And the answer always came back that since our insurance plan is a self-funded one, we basically have no recourse whatsoever. Whatever rules they make up are the rules that we have to follow, no matter how unintuitive they may seem. Jörg also checked into Illinois public aid (that is the KidCares site that you sent me, Emily), and we only qualify for a "spin-down" program, since Annika has only used up her yearly max and not her lifetime max. This is the option I mentioned before, which will have a $2-3,000 per month deductible. A deductible like that will send us into some serious debt. But still, it's obviously better than trying to pay for a room at Children's on our own. At this point, Jörg is still holding out some hope that the president of the university will be able to appeal to the board of trustees that administers the insurance fund (the funds are pooled from a group of universities). The hope is that they will just allow us to keep Annika covered through the year. We do at least have the feeling that the university and that our insurance company (not the reinsurer) are trying very hard to find a solution for us. And Jörg just called to tell me that Children's is looking into re-running our bills with a higher discount applied in order to get our total back down under a million and allow us at least a few more months' coverage. It is fairly shocking to think that we could have hit a million in the early days of February, even including bills from December. If we could get a few more months' coverage, we would at least have enough time to come up with a decent plan. Jörg is looking at finding a job at our old grad school, Indiana University, for the summer and fall semester, just so that we could get new insurance to cover Annika until she can go back on his university's plan. This would involve taking an unpaid leave of absence from his current job. Thank goodness that he already has tenure, so that this is an option for us. Of course, this would involve selling our house and moving. And it's not even clear that that insurance plan would cover Children's, but at least it would give us insurance coverage until next January. Still, it's less than ideal. So we're thinking this all over, and Jörg is getting very creative in coming up with options to get us through this without having to declare bankruptcy. Finally, we have also looked into fundraising, particularly since it looks like our best option for continuing insurance coverage on Annika will eat up the majority of our monthly income, even before you include any of the other expenses of living at the hospital for months on end. I think that we will probably set up an account with COTA, rather than just putting up some kind of a paypal button. First of all, this means that we don't have to deal with any tax issues since COTA is a not-for-profit (non-profit? I have no idea of the difference. See what I mean? I definitely don't want to be involved in any tax mess.) Secondly, they offer a lot of support to help us set up fundraising efforts, since we are absolutely clueless as to how to even begin such a thing. Thirdly, we like the fact that if we have donations go through COTA, there will never be any questions about whether we are using the money to fund a beachfront vacation for the whole family (although I do think I could make a pretty good case why such a vacation might be deemed medically necessary). COTA disperses donated funds only for approved medical expenses. Finally, I like that COTA will use any donated money that is not used toward the funds of other children. It's hard enough to ask for donations, but it's nice to know that if the worst happens and we lose her, that the money will go to other children who need it. Is that a morbid thought? Am I just too tired to avoid fatalistic thinking? Setting up the COTA account will take us a few days, as there is quite a bit of paperwork involved. But I'll link to it once we get it all up and running. Again, thank you so much for all your wonderful support. I laughed so hard at the thought of contacting Michael Moore (suggested in the comments) with our little story of insurance woes. It's only sad because we were so confident that we had great coverage. Well, also because it happened so quickly that we didn't even see it coming. But the truth of the matter is that I have no doubt that there are insurance stories out there that make our tale of insurance terror sound like a veritable happily-ever-after fairy tale. So, wow. Thanks to all of you who have commented or sent us suggestions of places and people to contact. And thanks also, unendingly, for kind words.

we are so screwed

2006-02-09T19:10:00.000-06:00

Oh, yes we are. Due to some unexpected insurance maneuverings, we are very likely to run out of insurance coverage. On Monday. Annika has a 1 million dollar yearly limit on her coverage. Although we knew we were racking up bills at an astonishing rate, we thought we were OK because a good portion of the expensive stuff happened in December. So we figured, naturally enough, that we were starting over with a new limit with our January stay. Jörg discovered today that our insurance company, or more precisely the insurance company's reinsurer, figures its limits according to when the bill comes in, not when the service was actually rendered. And, somehow, many of November's and December's bills didn't roll in until January. So that's it. We're out of money. And it gets even better. Jörg checked into what sort of state or government assistance would be available for a child who ran out of insurance while still in need of serious medical care. It turns out that we aren't qualified for anything that costs less than 3,000 dollars a month (plus our usual premium for the university's insurance), mainly because what Annika has reached is a yearly limit, not a lifetime limit. So she's technically still insured. It's just that insurance won't pay anymore this year. I'm looking at the calendar right now to remind myself that, yes, it really is only February. Holy crap. As if we weren't already broke enough, what with the millions of incidental expenses that come with long-term hospitalizations. This was totally and completely unexpected. But on the plus side, it's mobilized my anger and all that emotion away from mulling over the uncertainty of Annika's future health-wise. It's much easier being angry at an insurance company than at the nebulous workings of the universe that have led Annika to have so many problems. It's crazy. And we are flabbergasted. I know most transplant families do fund-raising, and we never did that, thinking that we were fairly well-cared for, insurance-wise. I do know that people at Jörg's university are working as hard as they can to try to help us, but I'm not sure how much they can actually do. I say again, it's crazy. ~~~~~~~~~~~~~~~~~~~~~~~~ Annika, meanwhile, is doing very well. She started eating real food this morning, and is very pleased with the feeling of a full tummy again. She had a breakfast of peanut butter, wheat crackers, and carnation instant breakfast. But she was campaigning hard for chocolate cake. So, for lunch, chocolate cake it was. On the down side, she vomited yesterday and she's got some seriously stinky stuff coming out the other end at a rather brisk pace. She's being checked for C-diff and rotavirus and all the other usual suspects, but no leads on that as of yet. She's been a bit more perky today, what with all the regular food offering a serious pick-me-up, although she's a bit irritated that she's still getting the TPN (IV nutrition). "But I'm eating now, Mom! Through my mouth!" And her spunk has been showing up at unexpected times. When one of the residents came to examine her, she let her know in no uncertain terms that she was ready to get out of this room. "Where do you want to go?" asked the unsuspecting resident. "Back upstairs. To 6. To the blue-and-yellow rooms," answered Annika unhesitatingly. "Why is that?" she asked, curious to hear a 5-year-old's take on the subject, I suppose. Annika gave her a withering look, full of pity for the obvious inexperience that must inform such a question, and answered succinctly, "Because this is the PICU." A-ha. Say no more, child. ~~~~~~~~~~~~~~~~~~~~~~ So after the venting of my fears in my last post, or perhaps because my anger about the insurance situation has ignited my better spirit, it seems my capacity for optimism has returned. Maybe Annika will stop bleeding every few weeks. It could happen. Or maybe she won't, and we'll be forced into a retransplant to try to save her life, and maybe she'll pull through it OK, after all, despite all the indications that would make that scenario less likely. As Dr. Emerick said in rounds the other day, "This is Annika. She takes a lickin' and keeps on tickin'." I have appreciated hearing all the stories of miraculous surgeries from others, and also the gentle advice that we seek another medical opinion, but in some way I really feel that we are bound to stay here, at Children's in Chicago. The fact is that no one has said to us that bleeding from Roux varices is a particularly inoperable condition. In fact, the Rex shunt that she was originally scheduled to have, and which did not work due to her complicated anatomy and tendency to bleed, would have solved the Roux varices issue. And there are other shunts and other surgeries (devascularizing the Roux limb, for example) that could also solve the issue. The problem is that the surgeon does not feel that any of those options would be a good idea for Annika. And it's not as if we are depending on the opinion of some unknown, untested surgeon. Dr. Superina is well-respected and very senior in the field, and he has undoubtedly performed more Rex shunts than any other surgeon in this country. And it's also not as if we are depending on the opinion of a timid surgeon unwilling to try difficult surgeries. And although another surgeon might think that some sort of surgery might fix Anni's bleeding, Dr. Superina is the only surgeon on the face of this planet that actually knows what Annika looks like there inside her complicated little abdomen. No non-invasive imaging technique in the world will really tell anyone whether or not a particular surgery is likely to be a success or not. If Dr. Superina says that he doesn't think it is a good idea to operate, then I think we would be foolish to choose the opinion of someone who could only look at a cloudy image over that of the man who has actually shaped her internal landscape. All that being said, I would love to hear, Mary Lee, exactly what kind of surgery helped your daughter. Just to make sure that it's not an option that's being overlooked, although I do feel certain that she is not a good candidate for any type of surgery whatsoever for several months at least. E-mail me! ~~~~~~~~~~~~~~~~~~~~~~ So it's off to pack up our stuff to move upstairs, back to 6. We'd rather be heading home, but at least the rooms are cheaper up there.

2006-02-08T12:20:00.000-06:00

I've been remiss in posting photos lately, so here are a few recent ones. Click on the photo to go to Flickr for larger sizes and commentary. (Christmas) (playing blood draw) (ah, the joy of specimen tubes) (missing tooth) (The Hair! The Hair! )

hard words to live up to

2006-02-08T12:15:00.000-06:00

We are still in the PICU, but anticipate leaving soon. We will not be leaving because everything is fixed and OK and back to life as usual. I suppose I should have updated sooner, but I've needed a few days to come to terms with the situation. I don't want this to turn into my journal of grief, and the past few days have seen me falling apart, at least a little. I want to live up to the title I chose for this journal, to live up to the lesson of Annika's observation that falling down can be done with style and appreciation for the change in point of view that falling offers. It's not easy to do, as I've lost that enviable "It's all good, man!" attitude that comes so naturally to children. As you may have gleaned already, the news here is not good. Although it could be worse, I suppose. As of yesterday, there was still some hope that perhaps Annika's renewed bleeding was due to a stomach ulcer or other remediable issue. But yesterday Annika had an upper and lower scope, which revealed no possible bleeding source in her esophagus, stomach, or colon. This means that, by elimination, the bleeding must be coming from the vast area in-between the two, her small intestine. Past CT scans have revealed possible varices around Annika's Roux loop, which is where her bowel was attached to her liver during her Kasai, the surgery done at 6 weeks in the hope that bile flow would be reestablished. This is thought to be the most likely source of her bleeding. The bad news is that there is nothing the doctors can do to fix this bleeding, short of a retransplant, and the surgeon assures us that a surgery as complicated as a retransplant (complicated by Annika's difficult anatomy and the fact that she is still recovering from the shunt and subsequent bowel perforation and sepsis) is unlikely to have a good outcome right now. Giving it straight, she's unlikely to survive a third transplant at this point. So we're back to 1950's-style medicine, back before there were shunts and pediatric liver transplants. She'll take a blood-pressure medicine which helps prevent bleeds in adults, but hasn't been shown effective in children. Still, it might help and we don't have much choice but to try it. We'll hope that Annika's bleeds remain manageable, at least for 6 months or a year, when Annika will (hopefully) be a better candidate for successful transplant. We have no idea what to expect from life in the next few months. Annika will go home with a PICC line, in anticipation of the likelihood that she'll be needing transfusions and other IV meds on a regular basis for future bleeds. We'll probably become regulars at our local ER, and we might as well set up a regular Annika ambulance service, since she'll always need to be transferred to Chicago. We don't know if she'll be able to return to preschool. We don't know if we'll be able to sign her up for kindergarten, as all the other parents of 5-year-olds are thinking of around this time. We don't even know how much time we'll be spending at home. We don't know how bad this is going to get, with our hands tied behind our backs. There's so much we don't know. But it could be worse. That much, at least, we do know. Not that that's anything but cold comfort. For now we're hoping that Annika catches some breaks; that she can rest enough in relative health to recover from the storms of the past few months. In another few months, if we're lucky, she might have recovered enough to stand a good chance of surviving a retransplant. In a few months, if we're really really lucky, the bleeding might have stopped on its own. But she's been bleeding on such a regular basis, it's hard to hold out much hope that this will happen. It's like the optimism lobe of our brains has been surgically excised. All this time, through everything that we've been through with Annika, I've never really been able to imagine that we would lose her. As I've always said about myself, I have a deep well of denial and I keep myself well hydrated. But for the past few days, it's all I can think about. And I'm full of questions that I've never wanted to ask myself. Questions like: How much should we be willing to put her through in what may be a futile effort to prolong her life? If she only has 6 months or a year left, shouldn't we try to make those the best 6 months that we can? But what if we just buckled down for those 6 months and dealt with the unpleasantness? Might we then be able to save her life? If we couldn't save her life, but perhaps give her just an extra 2 months at the cost of 2 really horrible weeks, would it be worth it? The problem with having a sick child, besides the obvious stuff like walking around feeling like something is trying to claw the heart out of your chest, is that you're forced to make decisions for another human being, who is totally dependent on you. I have my own ideas about what would be enough for me, but how can I know what Anni would be willing to go through? I tell Annika that she can't eat right now, as she hasn't been able to for the past 5 days, because it might make her bleed again, which would make her very sick like she was before. She tearfully replies, "OK. Fine. I'll be very sick again then. Just let me eat." And, of course, I can't take that seriously because she is just not old enough to understand the ramifications of what she's saying. But it's not right to totally ignore the sorrow behind what she's saying, either. When Annika was first moved down to the PICU, the doctors had to place a central line in her bedside, never an ideal situation. One of the doctors tried valiantly to explain to the crying Annika why all this was necessary, "Annika, we need to put in this special IV to help us fix your tummy!" At this, Anni scrunched up her nose and began crying harder. I shook my head, explaining to the doctor quietly that she was a bit sick of hearing this "fix your tummy" business as an explanation, since it had been cropping up since mid-November and, thus far at least, never seemed to work. It seems that lately all I can do to comfort Annika is to assure her that she only has to put up with crap for a limited amount of time. I'm constantly explaining the terms of the negotiation: She can't eat until she's off the octreotide (and, yes, she does by now know its official name, not just that it's the "stop-bleeding-medicine") and has gone 6 hours with no bleeding ("How long is that? Maybe 5 minutes?" she wails); she can't remove the NG-tube until her poop turns clear (For the clean-out in preparation for the scope, at her first toilet session she only peed and when we told her we needed to see poop she replied, "Well, it's my pretend poop!" She twisted her head to look behind her and continued, "And it's clear!"); she can't go back upstairs to a regular room until the doctors are sure she's safe ("Yes! I am! I am just fine!"). At first Annika was really angry about bleeding again and moving back to the dreaded PICU. She threw her tooth fairy money across the room (after asking permission first!). Later on, I gave her a pillow to bang on, after she threw a half-hearted punch at me in frustration. I sat on the bed with her curled into the sheltering space between my breast and armpit while she cried with exhaustion, having beat the stuffing out of the pillow. "What can I do to make you feel better, sweetpea?" I asked, expecting to hear a request for a story or a movie or a song. Instead she said, "How about we go live in another country for a while?" She's a problem solver, alright. And I love that she never thinks small. But 5 days later, she seems to have accepted her plight, much as I have. She frequently spends her days with the TV on, music playing in the background, while doing a puzzle and perusing family photos on the computer. She only turns up the volume on the TV when something catches her interest. As usual, the commercials are as likely to be as interesting to her as the actual programs. One commercial for baby formula caught her eye yesterday. "Mama, we need to get that!" she proclaimed earnestly. "Why do we need to get that? We don't have a baby around anymore! Little Frankie eats grown-up food, you know." And I resisted mentioning the fact that neither of my girls had much truck with bottle-feeding, anyway. Saving the stories of the late-night feeds for the teen years, I suppose. "Well, you know, I'll need it for the baby that's going to pop! out of my tummy someday," she explained seriously, only allowing a bit of morbid glee in the explosive sound of "pop." "But that's still a long time away, sweetie," I explained. Jörg, ever the practical one, added, "And that baby food is unlikely to still be good by that time." "OK," she agreed, "And I guess I need to grow some breasts or something first, right?" We laughed at that, much to her disgust. I felt better, seeing a return of my happy child. And the answer to my questions, the answer which I knew all along anyway, was right there before me. Annika's gift, and I know it's one shared by all kids, is to find joy when others might have stopped looking. So of course we'll go through it all, together, for the chance for more of that joy. Whenever it comes, for however long.

PICU blues

2006-02-04T15:28:00.000-06:00

Yes, we've got 'em. Annika is moving back downstairs to the PICU. Her bleeding increased quite a bit overnight, and it looks like she needs more intravenous access and more frequent labs and closer monitoring. Yuck and damn. Not much else to say.

fluoride

2006-02-03T12:09:00.000-06:00

So the bleeding continues, sometimes new and bright red, and sometimes old and black and sticky. But always with that smell, like old and tarnished silverware, that will henceforth forever more send me into an emotional tailspin. There is no plan right now. There is noone coming by to tell us what might be the problem or what might be the solution. Given that I was already an emotional wreck even in the comfort of my own home, you can imagine what kind of tightrope I'm walking here. And if there is at least some goal you're working toward, some idea of a map you can follow to lead you out, then I can hold it together long enough to follow the plan, no matter how rocky. But this not knowing and no action and nothing to look to for answers, it is like a little drop of water beating on my forehead every two seconds while I try my very best to keep the mood light for Annika's benefit. I don't think I'm fooling her much. Again, I forgot to pack Annika's toothpaste, the one that tastes like bubblegum. In fairness, I also forgot to pack my own, so we are both left with the crap that the hospital here has in stock. It is truly the nastiest bit of goo that ever found its way onto toothbrush bristles, with an aftertaste that reminds me of walking past a lawn that's just been coated with herbicide. Needless to say, Annika did not want to brush her teeth with it. I made her, anyway, since good dental hygiene is especially important for the immunosuppressed. But the next night, I was just feeling so low and it struck me what an optimistic thing it is, to brush your teeth every night. A real affirmation that you're thinking ahead to those days when all your faithful devotion to the fluoride deity will pay off in good chompers when all around you are losing teeth right and left. I just made her swish her mouth with water that night. But then Annika took a bite of her breakfast the next morning and said, "Ouch. My tooth hurts." Wondering if there could be retribution that quickly from the tooth gods, I checked her mouth. There, dangling at an odd angle, was her very first loose tooth. And behind it I could already see the imprint of an impossibly huge tooth pushing impatiently up from her gum. "Well, hello! Annika, it's your first loose tooth!" She beamed and reached up to wiggle it, almost shyly. Then we had a long conversation about whether or not the tooth fairy visited hospitals, and what kind of stash might be available to fairies doing hospital rounds. She had the tooth out in less than 24 hours. And I've been making her brush her teeth again. I mean, optimism has got to be the best policy, right?

insert expletive here

2006-02-01T14:30:00.000-06:00

or maybe just the sound of a scream would make a suitable title. Annika is bleeding, again. Impossible. My mind is still trying to wrap around it. So far we haven't had any of the great quantities of her past acute bleeds. But it's blood where it is most definitely not supposed to be. On the plus side, her mood today is better than it's been in a few days. She's like a little prisoner, looking forward to the release to the outside world, but then overwhelmed and unhappy with all that freedom. Back in her little blue and yellow room, she's perked up back in familiar surroundings. Or maybe it's just that the antibiotics have the fever under control. Whatever it is, she's speaking and grinning and coming up with mischievous plans involving straws and unused packets of ketchup (just imagine).

jinx!

2006-01-31T12:11:00.000-06:00

No sooner had I hit the "post" button on my last entry than Annika woke up crying and radiating heat that I could feel before I even touched her forehead. We went to the E.R., returning home at 3 a.m. with no explanation but reassured it was nothing critical. Two days later the fevers continue, and she now has such horrible pains in her right leg that she has once again stopped walking. So we're back to Chicago where she will be admitted. It's possible the leg pains are just from over-exertion after such a long time of disuse. But they want to make sure she hasn't developed a DVT. Also, they're going to check into the possibility that she has a touch of pneumonia, which was one possibility the E.R. doc suggested.

prodigal blogger returns

2006-01-29T20:27:00.000-06:00

I guess the vacation from the hospital turned into an internet vacation, too. But have you ever taken a vacation and thought to yourself, "I could live like this. Everyday. I really really could."? But then you start to wonder if maybe you would eventually take all that sun and sea and loveliness for granted, and find yourself vaguely dissatisfied once again. Just because that's exactly how perverse you have become in your need to whine, every single day. That the umbrella in your cocktail is annoyingly gauche. That the sand from the beach irritates the space between your toes. That the sun is unrelenting and is it really too much to ask for a little cloud cover every few days? And that the chocolate on your pillow every night makes so little sense because haven't you always already brushed your teeth before climbing into bed? Well, then, this is the post for you! So I meant to post some sort of update so many times, but it felt like some irritatingly yappy little poodle had taken up residence in my soul, and every time I sat down to write all that came out was so much yap, yap, yap. Shudder. For instance, when we were preparing to leave the hospital for the Kohl's house, all I could think of was the fact that there was some sort of screw-up with Annika's labs on Thursday. So the resident proposed that she have some of the labs done that morning and the rest (the time-sensitive ones) be done the following morning. And I was going to rail on about the fact that all these years post-transplant I have never had to ask Anni to be poked twice simply because I couldn't get my act together enough to get her to the lab on time, and here we were inpatient in a hospital with loads of people in blue jackets running around with blood draw supplies and the very lab to run the results in the basement just 6 floors below us, and somehow they can't work the schedule to avoid two sticks. But instead I just found our nurse and told her to beg whoever she had to in order to get a phlebotomist up to our room. Soon. And I made a back-up plan to steal a wheelchair and roll her on down to the lab myself to get the labs drawn all at once. All of them. Two sticks, my ass. Luckily for all parties involved, plan B did not have to go into effect. But, really, how silly is it to obsess over the number of needle pokes when the big picture is blinking right in front of me: LEAVING HOSPITAL! OFF TO KOHL'S HOUSE! PARTY! WOO HOO! And don't even get me going on the diplomatic intricacies and persistence involved in getting a lousy packet of Carnation Instant Breakfast (vanilla, please) to the girl who, in the past 6 weeks, lost 8 pounds (or nearly 20% of her body weight, and that's not counting the fluid weight she lost from her highest weight in the PICU). So we left the hospital and headed for the Kohl's House. We again borrowed the Gwyneth-Paltrow-Mega-Fancy Stroller to use for Annika, still without use of her legs. I had spent the morning hounding our poor nurse to get us discharged, even proposing she start paging (repeatedly) if the hold-up was lack of doctor's signatures on the discharge papers. But, of course, I still needed to get us moved in to the Kohl's House room, make sure we had groceries, and, very most importantly, fill the new prescriptions Annika was leaving on. The filling of the prescriptions can sometimes take some fancy footwork, and I needed all the time I could get to get the job done. What with the little poodle yapping away in my soul, and all. We got ourselves set up in the Kohl's House in record time, but Annika, unsurprisingly, had no interest whatsoever in accompanying me to Osco to pick up yet more pills to swallow. I bribed her with something or other, and we set off in the cold and biting wind. I wrapped Annika's bony little legs up in a blanket and wrapped a scarf around any skin left bare where hat and coat met, but she still shivered a bit on the way. We went to the new Osco, and I at least had the grace to be thankful that there was finally a pharmacy closer to the Kohl's House. But, of course, it took some 20 minutes of waiting and fruitless computer-searching and telephone transfers before the pharmacist could confirm that we were actually known to the company listed on our insurance card. At the end of those long 20 minutes, there was much regret expressed, but sadly the pharmacy didn't stock two of the three medicines and would Monday be soon enough? In blatant defiance of the "Please no cell phones" sign at the counter, I took my phone out and tracked down our long-suffering nurse from that morning to ask the resident to call in a prescription for just enough pills to carry us through the weekend from the hospital pharmacy, with which, unfortunately, our insurance company is not on speaking terms. And which was, also unfortunately, about to close for the weekend. About this time, Annika awoke from the little snooze she had been taking in the stroller. As was usual, she awoke crying and confused. Kneeling down beside her and hugging her, she clenched her legs and told me that she had to use the toilet. Now. I looked around for a sign and, seeing none, asked the pharmacist if there was a toilet she could use. "No, we don't have any for public use." Again, many regrets and all. I contemplated making a scene. Shouting at her impassive face, "Oh. OK. So she's made it through two transplants, repeated acute bleeds, a major shunt surgery which may well have not been successful given two subsequent post-op bleeds, 6 weeks in intensive care with an open abdominal wound, 1 month on a ventilator, for a lifetime total of 18 months or so in the hospital, 2 months of those with a machine breathing for her, but you think it's okey-dokey for her to JUST HOLD IT. Nice." Maybe making a scene like that would have made me feel better, but instead I just jogged back to the Kohl's House. On the way back I imagined the scene unfolding with my Big Speech (above). Then I imagined that it was my PICU buddy, Angela, in line behind me. Angela in real life would never roll her eyes at me, but she would have had every right. And then to follow it up with her own Big Speech, ending with a request for me to move it on and let her fill her own prescriptions. And then, because I can never stop once I get going, I imagined the pharmacist herself rolling her eyes at both of us and making her own Big Speech, because the world is oh so full of sadness. At this point you may be realizing why it's taken me so long to post, and perhaps even thinking that a few more days' time might have been well-advised, Little Miss Woe is Me Sadsack. Before leaving the hospital, I talked strategy with one of Anni's G.I.s, Dr. Emerick. She proposed scheduling the endoscopy to check out the state of Annika's esophageal varices for 11 days later, rather than during the next week. Her thinking was simply that Annika needed more of a break from the medical world than just a weekend would provide. If the scope showed more varices, despite the fact that her shunt appeared open on all the imaging, then we would be in for a serious excursion into the world of uncharted medical issues. "But," I had to ask, "if the scope shows no varices, would we be able to go home sooner if we went ahead and did it next week?" "Most likely. Yes." After that, there wasn't really much question. The Kohl's House is great and all, but it's not home. We scheduled it for the following Tuesday. I knew that if the news was bad, that I might regret not giving Annika one extra week to get back on her feet before pulling her right back into it all. But I was just that desperate to get back home, and I knew she was, too. Friday night, after all prescriptions had been secured, Jörg and Frankie and my mom arrived. The girls had a lovely reunion, with gentle pats on the head all around and much smiling. Saturday we had our long-awaited Christmas celebration. Michelle put up a tree in the upstairs lounge, and gave the girls some ornaments to decorate it themselves. We had to put a little chair beside the tree for Annika to do her share sitting down, since there was a more than halfway chance she would topple forward right on into the tree if left on her own feet. After lifting her arms to hang just a few ornaments, Annika was exhausted and we returned her to the sofa, where she supervised me finishing up the task. Her energy returned in enough time to open presents, albeit with perhaps a bit less gusto than in previous years. Still, it was an altogether satisfying afternoon. By Sunday it was time for me to get a bit depressed watching her attempt to stand, her legs quivering like a newborn colt's. With enough support under the armpits holding her up, she could move her legs in something that was close to walking, but with a stiff-legged gait that often resulted in crossed feet and collapses. And the crying. Oh, there was an awful lot of crying going on. And none from me, I'll have you know. Annika sobbed over every last little thing. Her milk was too cold. Or too warm. Her feet were too cold. Her socks felt funny. Her sister was touching her too much. Her sheet didn't feel right under her. It was too bright, or not bright enough, in the room. I suppose that I wanted to take her over to the Kohl's House and have the change of environment work magically to restore my old spunky Annika, with her fight and her humor and her general zestiness. Instead, I had something like a 5-year-old going through menopause on my hands. And it was all totally understandable. Jörg and I know better than anyone else all she has gone through, much of which I have reported here, but really not all, much as it may seem that way sometimes. If anyone deserves crying fits and hypersensitivity, it's her. But it just wasn't what I was hoping for, and I was starting to feel a bit bleary with it all myself. And then, of course, I was dreading the scope on Tuesday. Having had two acute bleeds from esophageal varices after an apparently successful distal splenorenal shunt surgery was just not very encouraging, even though she had not had a bleed in 3 weeks. "This will be our National Geographic Expedition scope," pronounced Dr. Emerick, emphasizing the whole uncharted territory nature of the procedure. Annika didn't protest heading back to the hospital early that morning, and she even requested that Dr. Emerick make a copy of the pictures of her throat for her. At least then she could see for herself what all the fuss was about. But then when they tried to give her the gas to put her to sleep back in the procedure room, she turned back into my old fireball, fighting and screaming. It broke my heart and gave me hope at the same time. Dr. Emerick came out to see me much more quickly than she ever had with any of the previous scopes, which should have been my tip-off, even if her huge smile of relief wasn't. "It looks just beautiful in there!" she exclaimed. "They're all gone, total decompression. Well, maybe one that you might call a Grade One, but nothing of what she had before. It's a sight to behold." And then she offered to remove Annika's staples while she was still asleep, and I remembered to let her know Annika's request that they also remove the tape covering her old JP drain site, as well, when she was under. And so that was it. Months of stress and worry and unexpected complications, and then they were just...gone. Later that afternoon I called around to give the news, and I was bursting with it, once it finally dawned on me that we could go home. That it was finally finished. By that time, the poodle in my soul was finally silenced and I probably could have written a very lovely and uplifting post, except for the fact that I was too busy packing and snuggling with my two girls who didn't want me out of a 6-inch radius at any point during the day or night. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ So a few days later I called Angela to check up on how she and Brad and Lauren were doing, and to give her our news, as well. Talking to Angela again, I realized how surreal all this was. That just a few weeks ago we were waving at one another through glass doors, watching each other's kids laying in beds in rooms crammed with medical equipment. And now we were going home with Annika, and they had been forced to arrange their own burial plots already to make sure that the space in the earth surrounding Matthew would be reserved for them to share with him someday. It was all happening too fast for the general terms "happy" or "sad" to be large enough categories to capture the feelings. On the one hand, I felt like I should be overjoyed that we were going home far sooner than anyone had anticipated. But it's not as if The Joy just comes over you naturally after such a long time spent in The Land of The-Very-Opposite-of-Joy. And how could there be something like joy when Brad and Angela had just let go of their own Matthew just days ago? How could there be joy, knowing that Annika may have to keep going through shit like this, all her life? But we all know that there will be joy. That there will come a day when Annika is laughing more than crying. That my posts will once more be posts like those of millions of other moms, full of poop and snot and cuddles and cute stories that are destined to be mostly cute to me, because they are about my own kids, the most lovably entertaining beings on the planet. So here's to the end of the hospital saga. May its continuation be a long time coming.

vacation, all I ever wanted

2006-01-18T12:15:00.000-06:00

Come on, sing along with me. You know it's already in your head, so you might as well. OK, so it's not a real vacation, but Annika is going to get a Hospital Vacation. She came up to 6 west on Monday evening, and then lost both I.V.s in quick succession, which meant that she did a power-wean on the dilaudid. Today Plastic Surgery pulled her JP drain, and so she is now tube-less for the first time since mid-November. She's doing well off the dilaudid, and so the doctors are going to let her go to the Kohl's House for the weekend, just to get out of here for a few days. She still needs to have an upper scope to check out the state of her esophageal varices (her original problem, which seems almost forever ago by this time), so she'll come back early next week for that. If they are still there, even after her shunt surgery... Well, I just don't know. And it doesn't seem like any of the doctors know exactly, either. It seems like giving her a break right now is a good idea. Michelle over at the Kohl's House has offered to put back up the Christmas tree for her, and I think I'm going to take her up on the offer. With Frankie and Jörg and maybe even my parents on the scene, we could have a real blow-out party of a weekend. Today I bathed her and combed her hair and put her in the shiny, silky pajamas that my friend, Andrea, sent for her. She feels beautiful and so much closer to normal in non-hospital-issue clothes, you can just tell. We're going to go on a wheelchair ride around the floor (she can't hold her weight just yet), looking out windows and enjoying the feeling of open space.

2006-01-16T12:50:00.000-06:00

Annika will be leaving the PICU soon. We heard those words first from one of the transplant surgeons here, "So," he asked Sunday morning, "what is keeping Annika here in The Unit?" ("The Unit", aka Pediatric Intensive Care Unit). The more cautious of the doctors listed a few reasons to watch her closely, but mainly the question was met with smiles exchanged among the 8 doctors gathered outside her room. And as we were readying ourselves to take our leave of this place, our long-time neighbor and PICU buddy, Matthew, was taking his leave, as well. But his departure was met with tears and that infinite sadness, almost too much to contemplate. It's that moment when you suddenly lose sight of your child in a crowd and your heart implodes at the same time that your entire body tingles with the feeling of loss, like a part of you that you absolutely cannot live without has suddenly disappeared. But then you twirl around, standing on your tiptoes for a better view, and you catch a glimpse of a familiar red jacket. And a few seconds later, with your child back beside you, you let out your breath and feel the dizziness in your head subside. I try to imagine that feeling going on for hours, days, months, years, and wonder how our gentle and lovely friends will be able to keep moving. To go back to a life without their precious one, the boy they fought for and cared for and loved so fiercely not just these past few hard months, but every day of his four years with them. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ A little over a month ago, after Annika had another bleed after the shunt surgery, back when she was clearly getting sicker by the day, she started showing signs of growing anxiety. We decided to insist that all medical talk be done outside her room, in order to avoid scaring her unnecessarily. But I always asked her, every day, if she had any questions about what was going on with her and her liver and all the hospital stuff. After all, I didn't want to keep Anni in the dark, but I wanted to be sure that the facts were given to her in a way that a 5-year-old mind could grasp. On that day, a little over a month ago, when I asked her if she had any questions for me, she nodded her head and gave me an earnest look, "Am I going to die?" The question, naturally, took me by surprise, even though I had been worrying about that very issue myself. Without even stopping to think about how best to formulate an answer, I blurted, "No! Of course not! You are not going to die for a very long time. You are sick now, but the doctors are going to make you better very soon and then we'll go home again." I didn't say "The End," but it was there, anyway. We called in the Child Life Specialist to give us ideas on easing Annika's anxiety and her growing unhappiness. I told her about Anni's question, and she replied a bit skeptically, "But does she really know what death means?" And I had to admit that I couldn't be sure she did. But the concept has certainly concerned her for many months now, ever since Aunt Pat's death, which she mourned in her confused way for weeks. For much of that time, her mourning was that of a child, typically and innocently self-centered. So, for instance, she mourned the fact that Aunt Pat, a famously gifted storyteller, would never be able to share her stories with Anni. And she cried over all the Aunt Pat singing and telephone calls and visits that would now never be a part of Anni's life. Just the week before Annika began the repeated bleeding that landed her in the PICU mid-November, and a few months after Aunt Pat's death, the girls and I were out in the front yard planting a new maple tree. It was fairly late for planting in the midwest, but I was encouraged by the unseasonably warm fall weather into purchasing the little tree at a bargain basement price, and hoping for the best. The girls, each with a plastic sandbox shovel, helped me dig a hole, loading the dirt into the wheelbarrow to use as backfill. Once we had the tree in the ground, we began refilling the hole until it was time to water gently to remove any air pockets. Anni enthusiastically volunteered to go fill the water bucket from the hose, proud of her ability to turn the outside faucet on and off. She hurried off while I stayed by the tree with Frankie, trying my best to curb Frankie's apparently irrestible impulse to jump into the hole with the little tree and fondle its delicate roots. Just a bit later, Annika ran back to me with her mouth pulled down unhappily and her eyes all shiny with tears. "What is it?" I asked, concerned. "It's a bird. And I think it might be dead. Or something." She pulled my hand to lead me over by the wild rose bush that grows in front of the house, near the spigot attached to the front of the house. Sure enough, there was one bird from the mourning dove pair with a nest near our house, the ones who spent the early morning hours of the summer cooing softly outside our windows. It lay there, right beside the brick front of our house, obviously dead. After ascertaining that Annika had not touched the bird (fear of disease rules our lives, I admit), I asked her to take Frankie to the backyard while I took care of the bird. Then Annika started to cry. "But now he won't get to fly around, or eat any more bird seed!" And just like that her sorrow shifted outside herself, as she realized that death also meant that the one who was gone would miss out on life, that sadness was not just about what Annika would miss. So, although I still wasn't sure that Annika really knew what "death" meant, I also knew that the same could be said of me. I did know that she grasped the consequences of death in heartbreaking simplicity. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Matthew had had so many close calls here at the hospital, and he pulled off amazing feats of strength and resilience. Even as the list of medical problems assaulting his little body grew in number and severity, there was still the feeling that he could pull it off. Somehow. And, yet, eventually your rational mind knows that there are only so many assaults a body can take, no matter how strong the spirit and will. When I left Annika's room that morning for a cup of water, I saw the privacy divider up outside Matthew's room, and the crash cart parked outside his door. I knew then that Matthew was approaching that border, even before I saw the strained and exhausted face of his father in the hallway. If love and devotion were enough, Matthew would be home playing with his baby sister by this time. His parents, Brad and Angela, kept a constant vigil at his bedside, reading him stories and massaging his legs, even after he was on the ventilator and fully sedated. Even as he lay unconscious, they spoke and read and comforted him. Their strength, kindness, and compassion held firm throughout their roughest times and deepest worries. Just after Matthew's latest complication, I walked with Angela to the PICU waiting room, where her 2-year-old daughter, Lauren, was waiting for her, a meeting arranged back when Matthew was looking more stable, a meeting now so much more difficult because of Matthew's troubles. But despite the weight of awful worry practically pushing her shoulders down as she walked out of the PICU and into the waiting room, she opened her arms to Lauren unreservedly and closed her eyes into the embrace. Her mommy instincts undulled by the harrowing experience of the morning, she praised Lauren's bravery, giving her a love unshadowed by the fear we all knew she held. I know that Brad and Angela will make it through this, and they will be back to Mommy and Daddy for Lauren, whose inevitable questions may be more difficult than any others. I know this, somehow. Although my heart aches with the thought of the days ahead, always missing Matthew and trying not to let their sadness weigh down the happy leaps Lauren still needs to make. I don't know how they will do it, but my respect for them tells me they will. After Brad and Angela left the hospital today, arms empty and eyes red, I walked down the hall to the toilet. Passing their room, I saw the privacy divider had been taken down and the crash cart returned to its proper place. No codes were called for Matthew's last moments. He went wrapped in his parents' arms, quietly. I'm glad we're leaving this place, now that Matthew's gone. Passing his room and seeing his bed, empty; it's heartbreaking. But the sight of someone else's child in that room, another parent keeping vigil, would be unbearable. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Of all the conversations I had with Angela over these past weeks, the most poignant one was the morning after Matthew had to be reintubated. He had spent a week off the ventilator, and hopes were high until the night before, when he coded and was put back on the vent. That morning, Angela told me with red-rimmed eyes about her fears, and how she had waited all that week to see him open his eyes and to hear him speak. "I was all ready to write down his first words off the ventilator," she told me. "I had my journal all ready. I didn't write down his first words when he was just a baby. I didn't write those words in a baby book, but I was so ready to record his first words this time... But he just didn't speak." That conversation was about so much more than just first words. It was about the regret of opportunities missed, a regret that haunts all of us PICU parents. For myself, I regretted spending my one precious day back home from the hospital between Anni's bleeds decorating the girls' room upstairs, all by myself, in a misguided attempt to do something special for the girls. I should have been playing with them, and hugging them, in that time that I didn't know was to end so quickly. Because who cares about paint? There's this country song (isn't there always a country song relevant to any sad conversation?) sung by, I believe, Tim McGraw. It's called something like, "Live Like You Were Dying." The song endorses a message that sounds reasonable enough: don't sweat the small stuff, and enjoy every moment of life. And I know that every parent can list things they would have done differently, if they were to be told that their time with their children would be short. But, on the other hand, this song also pisses me off a bit. I mean, think about it. If we were to really take this song to heart, where would we end up? We would all head off to a beach somewhere to chill out and feel the sun on our faces and listen to the waves and just enjoy the moment, right? Then, a few weeks later, we would all look around at each other with our sunburned faces (because who wants to be bothered with sunscreen if you're living like you're dying?) and wonder where we were going to come up with food (because who feels like harvesting corn if you're living like you're dying) and head back to our dark homes (because who feels like showing up to work at the power plant if you're living like you're dying?). Hey, thanks Tim. You just can't live life that way, not really. So Angela and Brad will go home and pull out the pictures they've taken of Matthew, and remember his life with them. I hope Angela never again feels regret about something as small as a first word. Life is more than just a series of moments. Annika was taken off the ventilator a week after Matthew went back on the vent. A few days later Angela stopped by, and saw Annika sitting up in bed with her eyes open. Lovely friend that Angela is, she cried with happiness to see Annika's eyes open again. But I know she was seeing what she wanted for herself more than anything else in the world, and we hugged and we hoped for Matthew, too. Annika's first word off the ventilator was "More." More: the grasping of life with both hands. But also, More: the very essence of grief. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ If you'd like to send a card to Brad and Angela or make a memorial in Matthew's memory, the information will be posted on Matthew's web page in the next few days.

welcome back

2006-01-15T10:41:00.000-06:00

Annika's continuing hallucinations and difficulties sleeping over the weekend led to a full neurological workup. First they did a quick EEG to see if any red flags popped up. The short study looked good, but they decided to do an MRI of her brain and a 24-hour EEG to get a better picture. For the 24-hour EEG they wrapped her head in white gauze, mummy-style, to hold the many rainbow-colored EEG probes sprouting from her head in place through the night. Annika was not happy with her new head gear, nor was she pleased with the computer monitor placed beside her bed, with black lines squiggling across the screen every time a thought entered her head. She spent the night turned on her side, staring blankly at the screen, as if she could wish it away with the force of her gaze. Snuggled beside Anni in the bed, I gazed down at the snowy turban on her head, smelling faintly medicinal from the hospital tape, which never smells like regular tape. At the center of the headwrapping a hole was left open for the wires of the EEG to come through and connect up to a black box left on the head of her bed. A few stray blonde curls escaped through this same hole, and looking down at those little hairs, which had wriggled free of the gauze trapping the rest of her hair, I felt a little sad to think that her problems might have spread beyond our perennial liver issues. I had no idea what to make of the angry scratches of black that covered the screen when Annika cried, as she had done most of every night, that everything was getting "covered in goo!" Still, she was keeping her eyes open almost all of the time, and she was requesting that I read to her nearly constantly. Our backyard neighbors had sent Annika a package with the first two Little House on the Prairie books, and she loved listening to the long, seemingly endless descriptions of the prairie grass and the changing light across the prairie and the laborious details of the work of everyday life back then. Of course, there are also some scary scenes in the book, with wolves and panthers and fires, and I hesitated to read such descriptions to a child suffering from terrorizing hallucinations. In the end, I left the scary things in the story, but I edited those scenes by skipping over some of the more dramatic detail Wilder lavished on her childhood nightmares, and thus got to her comforting conclusions more quickly, when Laura and Mary settled in at Pa's knee to reflect on the coziness of their lives together. Last night we settled in for a sleep on the least amount of drugs that Annika has been on since her bowel perforation and abscess were discovered over a month ago. Annika insisted that she was not sleepy, not really, but as I read the description of Christmas on the prairie, and wondered to myself if she has yet realized that she missed her own Christmas this year, I saw her eyes close and her breathing slow. Putting the book up safely above her head, I settled in beside her, not even daring to leave the bed to turn down the lights for fear of disturbing her. Nights in the PICU can never be described as peaceful, and we're neighbors now with an adorable baby boy who has a trach hooked up to his home machine, which has a beep designed loud enough to wake sleeping parents when there is some change in his breathing. Evidently being awake is disturbance enough to set off this sensitive machine, and there is no volume adjustment in recognition of the fact that, in the PICU, someone is always awake and watching. And, in addition to our neighbor's loud beeps, Annika's PCA (patient controlled analgesic, i.e. the dilaudid pump) beeps even louder than any of the regular IV pumps, as if it is worried that everyone around might be in a dilaudid haze and miss its warning signals. Still, our night last night was as peaceful as any we've ever had here. Scrunched into a little corner of Annika's bed, with the side rail up to keep me from flopping to the floor, I occasionally awoke to a numb arm or leg, protesting the lack of blood flow resulting from the awkward positions I took up to avoid laying on or pulling any of Annika's lines. When I tried, carefully, to shift my position and regain feeling in my extremities, Anni would stir and reach out her arms, stiff with armboards supporting her IV's. "Stay," her little creaky voice would command. And I would say, "Of course I will," and then find a new uncomfortable position for sleep. Finally I awoke with the feeling that it was morning, although the window behind us was still dark. No bright and clear dawn to signal the new day, but when I looked at Annika's eyes, already wide open, I saw a brightness and clearness there that more than made up for the dark. Looking up at the large wall clock, I saw that it was 6 o'clock, Annika's normal waking time. Then I felt a new discomfort. Not the stiffness of arms and legs, but a feeling of my pajamas hanging on me too heavily. I reached my hand down to the bed, and felt that I was laying in a huge pool of wetness. I looked at Anni and said, "This bed is really wet." After so many mornings when we both awoke wet from Annika's night-long sweats from fevers or withdrawal or both, I was surprised when she explained calmly enough, "Yes. And that is because my diaper is leaky." I stepped out of the bed and my sweat shirt and pants drooped wetly off of me. Annika observed, "You are going to need some different clothes, Mama. I think you need to call the nurse. I think I need to be changed and get dry. I think I am thirsty for some ice water. I think I need some breakfast." With that long speech, run together in her adorable voice (for proof of its undisputed adorableness, check the links to recordings of her singing on the sidebar), I welcomed back my oldest daughter, with her flights of fancy and take-charge attitude. How we have missed her.

see no evil

2006-01-13T09:12:00.000-06:00

Annika has spent the past 48 hours refusing to open her eyes. When the child psychologist came by on her morning visit to Annika she asked her, "Annika, does the light hurt your eyes?" Annika, after a few seconds shook her head and squeezed her eyes tighter. In a little whisper she answered, "The monsters hurt my eyes." Still I think we are making progress on the hallucinations front, and now she is mainly scared because she remembers the things that she has seen. On the good news front, the glorious and unexpected and wonderful news front, Annika was closed yesterday! OK, not completely closed, but closed enough that when she runs her hands down her tummy she finds a smooth patch of skin only interrupted by a neat line of gauze-covered staples. The transplant surgeon called in the plastic surgery service because he suspected she would need a skin graft to close her. But the plastics team was able to find enough viable skin to make the closure. They were even able to close the upper layer of the fascia, although the muscle and second level of the fascia under that are still open. So she has a rather large hernia across her tummy, but we'll take that over gaping wounds any day, thank you very much. The closure was so neatly done that I inquired whether we might get in plastic surgery to close her after every surgery. I think Annika's neat-streak is going to be very satisfied.

where the wild things are

2006-01-10T19:33:00.000-06:00

In our past PICU experience, the hardest time is when your child is in limbo as the sedation is weaned to allow them to wake up, but they are still on the breathing tube. Believe me, you really don't want to be awake when you're on the ventilator. The PICU attending last week specializes in pulmonology, so he knows a lot about kids on ventilators. He tried telling me that after a child's been on the vent for a couple of weeks that it's not really so uncomfortable anymore. "In fact," he enthused, "I've known kids who have been awake and happily playing cards while intubated." Uh-huh. Meet my daughter, sir. The girl who was still kicking after huge doses of morphine and versed on top of a chloral hydrate and benadryl cocktail. Oh, and also two doses of a paralytic drug. Kicking, I tell you. She's not one to live by the serenity prayer ("God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.") Or maybe it's that she's your typical child, with more courage than wisdom. Although, before I go knocking her wisdom, I should recall that she'd already proven that being intubated is a state that she's perfectly capable of changing herself. So maybe the serenity prayer has just missed out on a category: things you damn well can change, but really, really shouldn't. I know. Nowhere near as poetic. The first night after her extubation was hard, as I expected. I stayed up all night, but greeted the morning with the optimism that every day should be easier than the next from now on. I got a little sleep during the day, but mainly I played with Frankie and did laundry, all with the expectation that that night would be better than the previous one. I could not have been more wrong. Thursday night she began hallucinating. And not friendly things like butterflies and pink elephants, but the sort of things that show up in Marilyn Manson videos. Well, OK, maybe not that bad, but on the other hand the most terrifying dream I had as a child was of a seal chasing me down an ever-lengthening hallway, so I know it doesn't take much at that age. (Yes, a seal, noted for their creepy friendliness and frightening pursuit speed on land. And this was before The Penguin Movie cast seals as the bad guys.) It all started when she awoke trembling and wide-eyed. She began pushing herself off her bed with a frantic determination. We finally got her to tell us what was wrong: she saw fire in the corner of her room. We tried to convince her that there was no fire, and explain where she was, but she clearly wasn't reassured. Finally, exhausted, she drifted back off to sleep. She awoke again 10 minutes later, screaming, "Someone please help me! Help me! Someone!" Tears began streaming down her face as she tossed her head side to side and beat at the air with her arms. The expression on her face was one I'm hoping that I'll not remember long. I tried to hold her, to keep her from hurting herself, and I told her that I would help her, if she would tell me what was going on. "I'm in the dryer!" she whimpered, and she pulled her knees up to her chest and cried and would not be consoled. And the night went on like that, all night long. More fire, more tears, more screams, more terror. The next morning it began all over again. When Jörg walked through the door, she stiffened and began crying. "It's a bear," she declared, when quizzed. We turned on the lights, and had Jörg turn circles while we tried convincing Annika that her father was not, in fact, a bear. I'm not sure we ever fully persuaded her, but at last she conceded that he was, at least, a friendly bear. A med/psych consult was called in, and Annika is now on an anti-psychotic to control the hallucinations. Anni is on a lot of miraculous drugs that have made her joyous life possible, but I have to say that I have never been so grateful for a drug as I was for that teeny little pill that extinguished the fires surrounding her. Now we have to deal with the fears that are more based in reality. She has been endlessly picking at the dressing covering her still open abdomen. The surgeons had hoped that the incision would close on its own after 3 weeks or so, but she's headed for 4 weeks now and the wound is still gaping across her belly. When she puts her hands down there, she can feel that there is a sudden hole at the border of her familiar abdominal scar. Last night she put her hands on either side of the chasm. When I looked at her, concerned that she was trying to remove the dressing again, she only asked me, "Mama, can you put me back together again, please?" I wonder if she's seeing herself as some sort of Humpty-Dumpty right now, afraid that she has been broken irreparably. Plastic surgery came by today to have a look at her tummy and talk to us. Anni's transplant surgeon is beginning to think that she may need a skin graft (using some of the skin from the back of her thigh area) to cover her abdomen, because the fascia may simply be too damaged to reclose on its own. ~~~~~~~~~~~~~~~~~~ Again, I wrote this and then did not have a chance to take the laptop upstairs to connect to the internet and post. So more recent news: After a few days on the anti-psychotic drug, the hallucinations have returned, with an aural component this time. Mainly now she's seeing monsters. A typical conversation: "The monsters are coming! Hide! Please!" "Annika, there are no monsters here. You're in the hospital. We can check the room to show you there are no monsters here. Really. Truly. No monsters." "Yes, there are. Right there. There are five of them!" And just to add to the fun, she's also seeing some sort of goo covering things. Not too clear on what exactly that amounts to, but she's none too pleased by it. Today, Anni's nurse, Genny, and I built her a tent out of sheets, I.V. poles and hemostats. For the nighttime, we folded back the sides and just left it as a canopy so that the nurse can still see her while she's sleeping. It's a pretty cool setup, though, and she loves it. It's great when you can still be a five-year-old and hide out in a tent, even when you're in the PICU.

milestone

2006-01-06T09:34:00.000-06:00

Annika's first word was "more." And her second. And also her third. So, yes, she is extubated! All that breathing is now being done on her very own. Well, of course, there's a lot of oxygen being blown into her nose, but, you know, there are people paying for the privilege of nasal cannulas at oxygen bars around the world, so I can't freak out about that too much. In an amazing show of lung resilience, Annika went from needing very high ventilator support on Saturday before the chest tube was placed to requiring only pressure support all through the night Tuesday. So Wednesday at noon they removed the breathing tube. The first several hours off the ventilator were were unbelievably wonderful. She was still sleepy from the sedation, but when she awoke, she was calm and responsive. Since she had been on the ventilator for so long, the doctors didn't want her to drink anything until the next day, just to be safe. But of course, her mouth was dry and throat sore from the tube (and you can't swallow your saliva with a breathing tube in). So I offered her a pink mouth sponge dipped in water to clean her mouth. Of course, she took it in her mouth and sucked on it eagerly, moving her tongue all around the ridges of the sponge's star shape. The sponges are attached to a little cardboard lollipop stick, and I pulled it back out after a few minutes. She looked at me with her bleary, drug-shrunken pupils and said, "More." I tell you, it was more of a moment than her actual, very first word. Annika was a late talker, not really taking steps toward verbalization until well after her second birthday. The speech therapist working with Annika suspected that part of her problem was lack of abdominal strength (try talking out loud and put your hand on your abdomen while you do it -- see how you have to tense those muscles to control the air flow that powers your voice?), so she taught her some hand signs to speed up the process of communication. The first sign that she really took to using was the sign for "more." So she's consistent, at least. But her first spoken word as a child? I couldn't actually tell you. You know how it is -- they start making these little vocal noises, and you, the eager parent, listen with ears ready to assign meaning. But it's always kind of hard to identify the moment that a word is actually used in all its word-like glory. So you end up saying that "daddy" was her first word, despite the fact that the sound she was making, "da," was used to refer to mommy, daddy, the cat, ducks, cars, birds, bathtub, and once perhaps even a hairball from the cat excitedly discovered on the floor one morning. (And, just to be clear, "excitedly" here refers to Annika, not me. My own opinion of hairballs is somewhat less touched by wonder.) Yesterday's "more," though, was unambiguous in its intent and execution. Coming out in a creaky whisper, she was perhaps shocked when I jumped up and said, "Oh, that's wonderful, Anni! I can hear you!" Unfortunately, she couldn't see the huge smile on my face under the mask we now have to wear around her. Oh, that's the other thing. We now have to wear masks and gowns at all times in Annika's room. The nurses wear gloves, too, but we go bare-handed so she can at least feel the skin of our hands stroking her head. Then we're just careful to wash our hands when leaving the room. She's tested positive for a bacteria called B. cepacia from her breathing tube. It sounds horrible to have bacteria down in your lungs, but of all the bacteria that could have turned up, this is one of the more friendly ones. At least friendly for her. For children with cystic fibrosis, this is an incredibly deadly bacteria, so she's in contact isolation to prevent spreading the infection to any of the CF kids. This bacteria could also cause problems for her if it turns up in her blood or in her urine, but so far it's only shown up in cultures from the (now gone and good riddance) breathing tube. Naturally her extubation has been a source of incredible joy and celebration for us. But it's never all good news in the PICU. It just doesn't seem to work that way. Two days ago Annika had a very bad day. Her sedation started wearing off a bit too much as they were in the process of waking her up, anticipating getting her breathing tube out. In her goal-oriented wakefulness, she took her tongue and pushed at the breathing tube until the tape was loosened and it was dangling a bit precariously out of her mouth. While waiting for the x-ray tech to show up and check if she had moved the tube out of proper placement, her nurse stood by her bed and held the tube in place. Meanwhile, Anni was waking up more and more and becoming more and more panicked. Then everything went a bit chaotic. She spiked a fever, threw up, put out a huge amount of old, dark blood into her diaper, and began crying in either pain or fear. After an emotional hour, she finally received enough sedation to put her back to sleep and we all recovered ourselves. Despite the extra sedation, she still proved herself strong enough over night to have the breathing tube removed the next day. But since she no longer was on the ventilator to make sure she kept breathing, the doctors decided to switch out her drugs to begin the weaning process in order to avoid being so sedated that her body forgets to keep breathing. Just a few hours after the switch, she woke up in a distressing state of terror and agitation. The first thing she tried to do was pull out her arterial line. With her teeth. After the failed attempt at gnawing her right hand free, she decided to go for her Foley catheter instead. She had removed the tape tethering it to her thigh before I caught her hand in mine. By the time we had gotten the catheter retaped to her other leg, she had shifted her energies to removing her NG tube. Insufficiently taped, she finally hit upon success. A short-lived success, as it of course needed to be replaced in the morning, but I'm sure it was a rush nonetheless. Giving her the affectionate nickname, "Houdini of the PICU," we put immobilizers on both hands (not on the elbows, since I still wanted her to be able to move the arms after being motionless for so long), which we soon learned to cover with terry cloth slippers after she wiggled her hands out with apparently very little effort. As the night progressed, though, her situation only got worse. She was unable to relax for more than a few minutes before her body began trembling and she would awake with a jolt, seeming frightened and confused. We thought maybe she was in withdrawal, so we gave her more of the drugs that are supposed to help with withdrawal symptoms, but they only seemed to make things worse. She fought all night, and I stayed beside her all night long, holding her arms and not sleeping for fear she would hurt herself. Her nurse spent the night paging doctors, trying to figure out what we could do to help her. Throughout all this, she began spiking fevers again on a regular basis. And then her chest tube, scheduled to be pulled the next day, suddenly began dumping out all sorts of fluid again, 150 cc's in a 5-minute span. So Thursday morning the doctors decided to biopsy her liver, to rule out rejection or any other liver problems as the source of the fevers. They also decided to do a CT scan to check again for signs of infection in her abdomen, although the surgeon has told us that if she does have any more pockets of infection there they are pretty much powerless to do anything about them. So we'll hope nothing shows up there. Although the prevailing wisdom is that her strange behavior throughout the night was due to drug withdrawal, they called in neurology to evaluate her, just in case. So she's also going to get an MRI of her brain, to make sure that the fevers aren't a sign of a bacterial or fungal infection attacking her brain, which might also account for her behavior. For the biopsy and dressing change of her still open abdomen, they tried out a drug from a different class of sedation drugs, and it has worked wonderfully to calm her. So at least we are able to catch our breath, watching her rest, and process the constant flow of information. Because of Anni's new status as cepacia-positive, we had to move to the "cepacia area" of the PICU. Children's is very aggressive, commendably so, in trying to limit the spread of infection between patients, always a battle in hospitals where so many bugs come to live. But this means that we have lost our PICU neighbors, Brad and Angela and their son. We miss their company, and worry about Matthew. Annika and Matthew both were identified as infectious (but with different bugs) on the same day, following in their pattern of lock-stepping together. And while Annika's successful extubation is a huge step forward, Matthew had to be reintubated after a terrifying midnight near-miss episode that left Brad and Angela still shaking the next day when we finally met up. I want so much to somehow be able to hitch Matthew's wagon to Annika's, to have him join her on the path that is generally more improvement than decline. I know that the course of a long-term PICU stay is almost always a series of ups and downs, and his upturn could be just around the corner, but he's been hit with so much more than his share. Here is Matthew's website again, if you'd like to join me in my daily practice of sending him as much healing energy and encouragement as possible. ~~~~~~~~~~~~~~~~~~~~~~~~~~ This was written yesterday, but again I had no chance to connect to the internet to post it until this morning. Last night was again a restless night, but it is looking more and more like her difficulties are due to a bad case of withdrawal. Unfortunately, her body is in such a state that the drugs they usually give to help with the withdrawal symptoms (methadone and atavan) are actually making her feel worse, called a paradoxical reaction. So it's going to be a tough week as her body adjusts. The new drug she's on has allowed her more moments of lucidity, though. Mainly her mood is very sad right now, when she wakes up and realizes where she is and feels all the tubes attached to her. Last night she woke up and looked around until she spotted me. "Mama, I am not well," she said, in a statement sounding one part objective assessment, one part accusation, and one part plea for comfort. I climbed into bed with her, which is so much easier now that she is off the vent, and stroked her hair until she went back to sleep. We have a picture of her up on the door of her room, which everyone can see as they enter. It's this one: Underneath the photo I added in the message, "Thank you for taking care of Annika." Everyone is anxiously awaiting the return of that little girl with the sweet smile, as well as her counterpart, little mischief maker:

Placeholder post

2006-01-06T03:52:00.000-06:00

Just a short note: I have heard from some of you recently. I share your concerns about not hearing news lately. I am posting this as a placeholder so you can let Moreena know your thoughts. --posted by Running2Ks

new year, new tubes

2006-01-01T19:10:00.000-06:00

Anni is now the proud, new owner of a chest tube. The CT on Friday evening showed that she had so much fluid in her chest cavity that her right lung was nearly completely compressed. So rather than just tap the fluid, they left a tube in to keep draining it off. In the first few hours of the chest tube being placed, they pulled off 1 liter of fluid out of the chest cavity. Yup, that's 1,000 cc's of fluid. And it's still coming. Is it perhaps the 500th time we've heard the doctors say, "Wow. We never would have expected that! She really looked good for [insert surprising medical finding here]!" ? The good news is that the fluid from her chest doesn't show any sign of being infected. The bad news is that they are saying that she will be on the ventilator for at least another week, and that, evidently, is the optimistic view in which all goes well and Anni doesn't pull any more bunnies out of her magic hat of medical mysteries. I don't mean to sound too overly dramatic. Despite the shocking lack of right lung on the chest C.T., Anni's G.I. says that the C.T. of her abdomen looks millions of times better this week. And she tells us that she is surprised at how well her liver appears to be doing, despite the bowel perforation and massive infection. I'm just sick of having her on the ventilator. It's exhausting seeing your child looking so vulnerable for so long. And, even worse, the massive quantities of drugs she is on (and I have seen enough doctors' jaws drop when the nurses report how much sedation she has required to keep her still for procedures to know that "massive" is a completely accurate description) are beginning to be insufficient to keep her comfortable. Although I don't think she's in any pain, when she wakes up, her eyes dart around the room in a panic. This morning it took her 4 hours to settle back into sleep. No wonder. She's on a ventilator; she's got a huge N.G. tube down her nose (and this is not your usual N.G. feeding tube, this is the kind large enough to pull off blood and lavage her stomach in case of another esophageal bleed); she's got essentially a vacuum cleaner attached to a sponge stuck inside of a huge opening in her abdomen; she's got a chest tube suctioning off liquid beside her right lung; she's got multiple I.V.s incapacitating both arms; she's got a foley catheter to catch her urine; and, the final indignity, she has to wear the most horrible, plasticky, uncomfortable big kid diaper. Still, I think all of this would be bearable if only she had the breathing tube out so that she could at least complain about it all. There's something annoyingly wonderful about being able to air your grievances, even if it changes absolutely nothing about the situation. Witness my entries of the past several months.

balancing

2005-12-30T21:39:00.000-06:00

Ah, the delicate parental torture of feeling torn between your two children. Obviously, of the two girls, Frankie's been dealt the easier hand. But that's not so obvious from the point of view of a two-year-old. And, really, we don't (and shouldn't) expect her to see it that way. As far as Frankie is concerned, her world has been turned upside down, and all the normality that has come to signify safety for her has disappeared. Mostly she is dealing with it extremely well, thanks to the loving ministrations of my mother, thankfully retired and able to devote so much time to caring for her at our own house, which at least maintains a familiar environment for her. But she finds her own way to let us know that she's having difficulties. She fights going to sleep, her limbs twitching with the electricity of sleep-deprivation. And, normally an adventurous and satisfyingly healthy eater, she seems to be conducting nutritional studies funded by Hidden Valley, investigating the effects of a diet consisting entirely of ranch dressing sucked off of McDonald's french fries. I've been spending my nights at the Kohl's House with her and my mom, but usually I shower, dress, and leave for the hospital before she awakes in the morning. This morning, though, I overslept. Frankie was delighted to find me still in bed when she got up, and I decided I would take advantage of this opportunity to finally remind her of her once healthy eating habits. I called Jörg to see how the night had gone, and to let him know I would be a bit longer. He asked me to be sure and turn on my cell phone, in case something came up, and I said, "Of course." To my delight, Frankie ate oatmeal, blueberries, and orange juice for breakfast, with a chaser of cold pizza. Finishing up and feeling like Super Mama, I called over to the hospital to get an update on Annika. Jörg answered the phone, sounding very stressed, "Where are you? Your cell phone isn't on!" Annika had become very upset during her respiratory treatment, which consists of a therapist pounding on her chest ("I prefer the term 'percussing'," explained one therapist) to try to loosen the secretions clogging her lungs. After the "percussing," the therapist needs to suction out her breathing tube, another activity Annika despises enough to rouse her out of her generally sedated state. Jörg hadn't noticed her distress at first because he had been outside of the room listening to the doctors' rounds on Annika (the daily report and strategy session for patient care), and by the time he had gotten in there, she was very upset. He had tried to call for my help, and not reached me, to his frustration. Sure enough, my cell phone was still off. I felt terrible. By the time I got over there, she was calm and looking very comfortable. But her fevers have returned, so the doctors have ordered another CT to check if there are any other fluid collections to harbor bacteria. They have also ordered a chest tap to relieve the fluid off her lungs, and to check the fluid collected for any sign of infection, which should yield a final decision on the pneumonia question. Moving a patient on a ventilator is never an easy task, so there will certainly be a lot of action around our little corner of the hospital trying to take Annika on all her field trips. Some answers would be nice, though. I plan on staying tonight until she is through with all her tests, which means I could have a very late night over here. So I decided to spend the day with Frankie, letting her have some fun at a nearby park with a playground. I checked that my cell phone was still on approximately every 2 minutes, so I'm pretty sure that the other parents thought I had some electronic form of obsessive-compulsive disorder. I even checked to make sure that the ring tone was on, and contemplated setting my profile to "outdoors," except I don't know enough about my new cell phone to really understand what that means, exactly. When we returned from our playground fun, Frankie inhaled a bowl of spaghetti and asked for more. So at least we're making progress with one child. Annika, we're all waiting patiently for you, too. Meanwhile, our PICU neighbor, Matthew was successfully extubated yesterday, much to everyone's delight. His white cells still aren't kicking in, though, so the joy was tempered. Well, more accurately, his white cells keep showing up, rising, and then disappearing again. Matthew's dad, Brad (an employee of LaSalle Bank), and Jörg joke that Matthew's white cells keep Banker's Hours. Our PICU suite has become quite the convivial place. Angela and Brad bought pizza for everyone last night and we all, nurses too, sat around in our little common nurse area, still watching our children through the glass walls of their rooms. Our rooms are in a rather private corner of the PICU, so it really does feel like the place belongs to us. I keep saying that they should have installed couches and a fireplace for the parents to relax by while waiting for signs of improvement, until Angela pointed out that the amount of oxygen flying around the two rooms probably ruled out an actual open flame. I said I'd settle for a skillfully painted simulation. ~~~~~~~~~~~~~~~~~~~~~~~~~ Just since I started writing this, the situation has changed. Even with two transfusions of plasma to lower her bleeding times, they are still too high to safely have the chest tap tonight. So she'll get even more plasma through the night, and they'll do the tap tomorrow morning instead. The CT is still on, but probably won't happen before 8pm or so. ~~~~~~~~~~~~~~~~~~~~~~~ We still find ways to pass the time, though, and not just by staring at her vitals displayed on the overhead monitor. Last night we heard a strange noise coming from Annika's bed. Jörg went to investigate, leaning his head in close to Annika's. A bubble of mouth goo had collected around the tape on her breathing tube, inflating and deflating with the ventilator's puffs (her breathing tube is a little leaky). He rose back up again, a huge smile plastered on his face. "It is Annika! Come here, quick! It's hilarious. She sounds just like Daffy Duck!" Dear Annika, when you read this, please forgive us. You know it's all in love, don't you?

voice on the computer

2005-12-28T15:45:00.000-06:00

Since I was missing little Anni's voice, I decided to plow through my archives hunting for the movies and audio clips I have posted of Annika over the years, just for the fun of hearing her again. I've posted the ones I found on the side bar. Actually, I've a lot more movies that have been posted at one time or another, but I didn't learn to compress the movies sufficiently until this year. So I won't post some of the bigger ones, since I've got them stored in some free space that the university allowed me to use and I don't want to eat up their bandwidth. And, while going through my archives, I remembered that today is Jayli's birthday. Happy Birthday, sweet girl. It's amazing the ones that you don't forget, even when they are gone so quickly. Years later, I still meet new people here at the hospital who remember her so well, whose eyes still tear when reminded of her, who still can tell the story of the first time they met her.

post-Christmas wrap-up

2005-12-28T13:10:00.000-06:00

Christmas morning was not good. Jörg had heard that there was a Starbucks ("Star Box," as Annika calls it) open on Clark street. So I set out that morning on my caffeine treasure hunt, but not before Jörg had called to tell me that Annika had had another bleed, with large quantities of blood coming out of her NG tube. I knew this was really bad news, coming as it did nearly 4 weeks after the shunt surgery was supposed to correct this issue and while she was concurrently trying to recover from sepsis, bowel perforation, and an open abdominal wound. After all the other drama of the past few weeks, it's almost hard to remember that her bleeding was the original issue. As I was walking along Clark street, I was engaging in a little self-calming using the same technique I use on Annika, repeating over and over a comforting phrase. That morning my phrase was, "She is going to be alright." I couldn't squeeze my eyes shut the way I needed to in order to really concentrate and get it right, since I was, after all, searching for an open Starbucks, but I felt like I was doing a pretty good job of it. Then a man holding a plastic bag began his panhandle patter, and, distracted from my repetitions, I just started bawling. In the empty Christmas morning street, the sound echoed off the shuttered store fronts until it seemed more like the sound was all around me, rather than actually originating from me. The confused man, startled beyond what his poor inebriated heart could likely stand, began muttering apologies and saying, "It's going to be alright, baby." Reminded of my own mantra, I calmed a bit and thanked him. I finally happened upon the Starbucks, but it was closed, like everything else. The snow that morning plopped against my face in wet, heavy blobs, washing my face in an assault of weather. By the time I got to the hospital there was no sign of that morning's breakdown on my face. But now medical life continues apace. After the panic of Christmas eve/morning, one of her stronger antibiotics was restarted, as well as the medicine to stop the bleeding, and she improved immediately. Still, her ventilator settings were being steadily increased to support her lungs, leading some of her doctors to suggest pneumonia as the possible culprit for her sudden downturn. Of course, I hopped straight on to the internet and googled "ventilator-associated pneumonia." You'd think I'd know better than to do that by this point, but of course I had to read that VAP has an approximate mortality rate of 30%, and tends to be more serious in late-onset cases, which Annika's would be, coming 9 days after (re-)intubation. Luckily, our current PICU resident has no problem with googled-up parents coming at him with 1,000 questions about their experience with handling VAP (very good, nowhere near 30% mortality) and the likelihood that she actually has pneumonia (he is the doctor least convinced that pneumonia is her problem). I was much reassured, and even happier to see that the nurses were able to begin turning down some of her ventilator settings. My mom and Frankie are still here in Chicago with us, and Frankie finally got to visit her sister yesterday. In fact, when offered the choice of going to the hospital McDonald's first or visiting her sister, she chose Anni with no hesitation. We got suggestions from a child life specialist for how to prepare Frankie to see her sister on a ventilator and generally looking very sick, and she thought showing her pictures of Annika before bringing her back might be a good idea. So I met her at the front desk and we talked about the Polaroids I brought of Anni, explaining the breathing tube and the huge number of IV's going into both arms. We told her that she was sleeping, and that she needed a lot of rest to get better, and that she wasn't hurting. But the thing that Frankie really wanted to hear was that Annika wasn't sad. She repeated that question over and over, needing reassurance on that point in particular. I hate to think what that says of Frankie's current emotional barometer. Frankie seemed to take the actual visit in stride. She wanted to stroke Anni's hair, so I had to kind of bend her over the breathing tube so she could reach her sister's head without dislodging anything. She asked about the purpose of nearly every tube she could see, and was particularly impressed with Annika's foley catheter, used to catch urine. I can only guess what a 2-year-old makes of peeing into a tube. Just in case, I'll be watching to make sure she's not carrying any drinking straws into the bathroom with her. Her aim is really not that great. Frankie, though, has been enjoying her visit to Chicago much more this time. Matthew's little sister, Lauren, was great fun for Frankie. Frankie at first was calling her "Shelby," her other great blonde friend, but by the second day she took to calling her, "my friend Lauren." Their favorite activity, by far, was dancing together, and by "dancing," I mean, of course, twirling in circles for inhuman amounts of time, in the way that 2-year-olds, with their special inner ears evidently designed for spinning, love to do. Lauren is exactly the kind of gentle and easygoing playmate that Frankie needs to distract her from all the upheaval in her family right now, and I suppose the same could be said for Lauren. We were sorry to see her go yesterday. The Kohl's House does have a little Christmas tree up, and there were donated presents under the tree for both Frankie and Annika, so Frankie did not miss out altogether. Meanwhile, I've been spending as much time as possible with Frankie while Annika is kept completely sedated. So Jörg has been spending the bulk of his time in the hospital, including nights. As anyone who knows Jörg knows already, my husband throws himself into projects with a wholeheartedness almost exhausting to witness. So I come to relieve him in the morning and often find him bantering with the nurses, "So how are those 'lytes looking? What about the coag's?" (electrolytes and coagulation labs), "Can you believe that vanc level?" (vancomycin). He no longer refers to Annika as "puffy." Oh no. Now she's "edemous." I tease him that he's on the way to becoming one with the PICU. I tease, but I'm glad he took enough time away yesterday to shave and hang with Frankie a bit. I tease, but I dare you to find any parent more invested in making sure no one ignores any single detail in his daughter's care. Today the plan is to try to reduce her ventilator settings and her sedation, and add in the teensiest bit of formula through her NG tube to try to wake up her GI system. She can start moving a bit more because she has a fancy new dressing for her open abdomen. It's called a "wound vac," and it's essentially a huge sponge that is stuffed into the opening of the wound with a tube attached that continuously suctions out the goop (the goop best left uncontemplated). Because she doesn't have to have huge wads of gauze stuffed under the dressing with this system, her abdomen is much more secure and they have even been able to move her up on to her side every 4 hours. I look forward to those moments when she awakes just enough to feel my hand stroking her hair. I ask her questions ("Are you comfortable? Would you like us to move you?"), and then stare intently at her for several seconds. When the nod or shake of the head comes, slow and easily missed if you're not paying close attention, I enjoy the reminder that my Annika is still there inside that sleeping body. Hearing her voice again is going to be heavenly.

Christmas? Well, OK. I guess so.

2005-12-25T11:33:00.000-06:00

To be honest, Christmas has never been too good to us. Of the 6 Christmases since we've been a family, 3 of them have been spent in the midst of major medical mayhem: 2000 - Annika's first surgery at 6 weeks, 2001 - the discovery that her first transplant was failing and a second would be necessary, and now 2005 - this...this...whatever. The list of things going wrong right now is too depressing to list on a Christmas entry. Then there was a 4th Christmas, 2003, only shadowed by a runny nose, which, a few weeks later, proved to be the beginning of Anni's adventures with PTLD, followed shortly thereafter by the Neverending Rejection Episode. Two out of six just doesn't cut it in my book. The Christmas Elf in charge of the Tiede holiday season has obviously been hitting the egg nog a bit too heavily. It was hard to leave Anni's hospital room last Thursday afternoon. But she was looking comfortable, with a good heart rate and encouraging lab numbers. Still, I worried what would happen if she should wake up and I wasn't there to hold her hand and stroke her side just so and make sure her music was playing. Yes, Jörg was staying with her, but I worried anyway. Then, just before I left, Annika woke up in her usual unsettled state. Jörg was up and by her bedside before I had even reacted, and I watched the way she relaxed when she heard his voice. And then I knew that I was indulging some senseless worrying. As I was gathering my bags to leave, Jörg peppered me with questions: Did I have the list of stuff to bring back? How about the parking ticket? And the keys? The final question he called out as I was practically out the door was the real kicker. "Do you know how you're going back home?" Having driven the route successfully on more than just one or two occasions, I realized that I was not the only one indulging in senseless worrying. I guess when there's so much justifiable worrying going on in, it just tends to spill over onto even the most mundane aspects of your life. Having finally stepped out the door and made the final decision to go, I was suddenly in a mad rush to be home. I jogged to the car, scooted out of the garage, and merged onto the highway ready to put my cruise control somewhere above the legal limit. Luckily, there was little traffic to slow me down, but suddenly all the cars around me were carefully under the speed limit. Off in the right lane ahead of me, I saw why. There was an Illinois state police cruiser, toodling along in no great hurry. Like everyone else, I tapped the brakes and fell into line. But after 5 minutes of good citizenship, I began to wonder if all this was really necessary. After all, I didn't want to speed that much. Just enough to make me feel like home was just around the corner. Besides, I was positive that, if I were to be pulled over, I had an overabundance of tears just waiting for the right moment to appear. Plus, I had a clean record, not even any warnings, and a hell of a reason to be in a hurry. So I took a breath, pulled into the left lane, and passed the police cruiser, above the limit, but not flauntingly so. In my rearview mirror, I saw a mass exodus from the right lane to the left behind me. My rear bumper might as well have been magnetic. All those drivers exhaling at once, "Finally. We can just follow that idiot up there in front." No flashing lights, no sobbing necessary, I was on my way. When I was just an hour away, I called my mom to let her know I was almost home. We hadn't told Frankie I was coming because, well, you never know when something might come up that would make leaving a bad idea. I thought my mom would go ahead and tell Frankie now that my arrival was imminent. My mom, though, thought that leaving it as a surprise would be fun. So when she heard me pull into the garage, she picked Frankie up and carried her to the door. I opened my car door and saw Frankie squinting out into the darkened garage, looking none too pleased with the sudden cold wind on her feet. Frankie didn't see me at first, but when I stood up out of the car seat, I heard her gasp. This was an honest-to-goodness gasp, like all the breath in her little body rushed out in her surprise. Then she shouted, "Oh! Oh! Mommy!" and she begin to try to wiggle her way down out of my mom's arms. My mom held tight since Frankie wasn't wearing any shoes, but I just dropped my bags on the front seat of the car and came running to grab her up. Just as quickly as my arms went around her, her arms wrapped around my neck in a squeeze harder than I thought a 2-year-old capable of. I brought her back into the warm house and hugged and hugged her, Frankie's little arms never loosening as she burrowed her head into my neck. As a little experiment, I pulled the support of my arms back a little bit, and, as I suspected would be the case, she still hung there around my neck, on the strength of her own clinging arms. Squeezing her hard to me again, I knew that this was my early Christmas present. Finally I told her that I needed to put her down and bring my things out of the car. When her feet hit the ground she began to do a little skip-twirl combination move as she laughed the happiest laugh I've ever heard from her. "Mommy!" she exulted, "I am so 'pised wis you!" "Oh, really? You are surprised?" "Yes! Yes! Yes!" After I had my bags in and my coat off, she came to take my hand. "You come pay Yucky Ducks wis me now?" And we played Lucky Ducks for the next 30 minutes. I set out the red, green, yellow, and blue ponds and then asked her which color she would like to be. "Orange!" she replied without hesitation. Oh, you girls of mine. Must you two always blaze your own paths? So that was the best welcome home, ever. Of course, I was mindful of all those times when my return home, admittedly after a much shorter time away, was greeted with only mild to middling enthusiasm. It's a disappointment to feel you're not missed, even though you know it's a sign that your children feel safe and secure in your constancy. And now I was finally getting that pure joy at a homecoming, and here I was worrying about the psychological ramifications, and whether or not Frankie's need for security was being met throughout all this. So, yeah, it's no wonder parenthood will drive you chase-your-tail-both-directions crazy. For the rest of the evening I just basked in the glorious wonder of my over-the-top two-year-old. After her genuine and unabashed display of joy at my arrival, I was treated to several hours of Frankie's slightly more artificial displays of happiness. All it took was a look or a funny sound from me, and she would pop out her belly and slap it with both hands while emitting this ha-ha-ha-ha-ha-ha laugh that, while coming from a place of real delight, sounds just the tiniest bit forced. It makes me laugh, anyway. I marveled at the changes in my little one in just these past few weeks. Let me tell you, if you think it is disconcerting to hear your child talking just like you sometimes, just imagine hearing your child sounding exactly like your mother. "Oh, gracious!" Frankie scolded her animatronic pup, "You are making such a mess!" I'm just waiting for the moment she exclaims, "Heavens to Betsy!" and throws up her hands. I was doing fine myself until it came time to rock Frankie to sleep. My mom had moved the rocking chair (or had Jörg move it, more precisely) into the girls' bedroom, so that's where we sat together, listening to Frankie's current favorite lullaby CD. Sitting there, looking around the newly decorated room which had tickled Annika's fancy so much, I missed my little imp still in Chicago. But it was the bunk beds that really got me. Bunk beds are for two to sleep in, you know. That's where her absence was most noticeable, with her new pink bathrobe (passed down from her neighbor/hero Sabrina, as all her favorite things are) hanging from the top post. That night, freed from the responsibility of staying in the PICU with Annika, I decided a beer or two were in order. So I made myself a dinner of two slices of toast, and downed the first bottle. Normally, I'm a little off-balance after only one beer, given how out of practice I am at holding my liquor. But that one little beer didn't even make a dent. Two more bottles quickly followed, with similarly little effect. I can only assume that I had spent so long keeping myself on high alert that even three beers, being absorbed by only two measly slices of wheat toast, were not enough to dull that sharpness. Giving up, I headed for bed. As I settled in, the thought occurred to me that, if something were to happen at the hospital with Annika, I probably had had too many to drive, even if my mind had refused to go to that blurry, soft-filter place. Damning my shortsightedness, I made sure the ringer was on on the bedside phone, and hoped all would be well. In the middle of the night, I awoke to the unfamiliar sound of a child crying. I knew it couldn't be Anni, with her vocal cords immobilized by the breathing tube, so I was struggling to understand the sound. "Matthew!" I thought, assuming it was our PICU neighbor. "Oh, wow! He's finally been extubated. You go, little man!" But then I pulled up enough out of sleep to remember that I wasn't at the hospital, and the sound was, of course, Frankie. I went to her and found her sitting up in bed. "Mommy!" she sobbed. I reached over to her, "Lay down, little one, and I'll rub your back." She flopped down on her tummy, but turned her face to the side to look at me. "Where's Nonny?" she asked, for the first time. "She's still at the hospital, sweetpea. She's sleeping. She is still very sick, and needs lots of rest and special medicine from the hospital. She will come back home when she is all better again. Daddy is staying there with her right now, keeping her safe, and they are both sleeping." And so she drifted back off to sleep, and slept for 14 hours that night, exhausted from the many restless nights she's spent alone in a room meant for two. The next day, Friday, was less dramatic. We ran errands and organized clothes and cleaned house and it was all a pretty good semblance of normal life. Jörg called and said that Annika was still holding steady, and we all went to bed much easier that night. I drank only one beer, though, and only because it was the last one in the fridge. Just in case. And I still checked to make sure the ringer was on. Yesterday, I returned to the hospital with my mom and Frankie. Frankie, in the back seat with my mom, fell asleep almost as soon as the car left the drive, and I was left to switch between radio stations, searching for something besides Christmas music. Willing my grinchiness away, I compromised on a station that offered only intermittent holiday cheer, rather than the relentless non-stop of most of the other stations. (They don't call them Mannheim Steamroller for nothing. There's no escaping those guys.) Looking through my rain-drizzled windshield at the gray sky, I saw that there were thousands of birds flying south. The sky was just filled with them in all directions, in several groups of very loose "V"s. "Hmmmmm," I thought to myself, "Aren't you guys a bit behind schedule? You're not really beating the winter weather at this point, you know." Poor birds. Then, a few minutes later, I saw a group of stragglers. But these guys weren't flying south with the others. They were resolutely on their way east. "Wrong direction, guys" I thought, because I'm pretty sure having mental conversations with birds is not a sign of a nervous breakdown or anything. But then the radio station started playing a Christmas song, and there I was, headed away from home on Christmas eve. Totally the wrong direction, myself. So I gave them a thumbs-up, which, of course, I know birds don't get, and wished them well on their flight. Frankie awoke as we were passing the lights of downtown Chicago. "This is 'cago?" she asked. When she heard that it was, she declared that she wanted to see Nonny. I hadn't been planning on taking her in to see Annika while she's on the ventilator, figuring that would be kind of scary for a 2-year-old. But she was not to be dissuaded, so I finally agreed. Arriving at the Kohl's house, though, we discovered that Matthew's little sister, Lauren, was at the house. She was up to celebrate Christmas, and also to prepare to donate another round of stem cells to her brother. Lauren is 2, like Frankie, and also like Frankie, she hasn't been allowed to play much with other kids lately, out of fear that she'll pick something up that will spread through the family to their sick siblings. So Frankie and Lauren were excited to play together, and I left her happily playing when I went over to the hospital (but, of course, I did offer to take Frankie and was much relieved when she said no). I was glad that Frankie had not come with me. Annika was not looking good. She has gotten much puffier as the fluid in her body is stored in the wrong places and her eyelids, swollen like the rest of her, were an angry purple shade. One look at the numbers on the monitors also told me that she had slipped in her recovery. Her heart rate, comfortably slow when I had left, was back up to the rapid beating of a body under stress, and her oxygen levels were down, despite the fact that I saw that her ventilator settings had increased considerably over the past two days. Jörg told me that her labs today had been horrible, with her liver numbers shooting up (the labs that let you know how healthy the liver is, or can also indicate infection status), as did her coagulation time (the amount of time it takes blood to clot - since Anni's been a bleeder, this can spell trouble). And, evidently, her chest x-ray from this morning did not look good. So, who knows? Another infection some place else in her body? Pneumonia? Liver troubles? We're back to wondering what the next step will be. Then, just to make sure the holiday was greeted in style, Annika had another acute bleed last night. Yes, it's Christmas as usual around here. I'm thinking of just moving the whole damned holiday to April, for good. But I suppose that, unless I plan on storing the kids in the basement for the 3 months leading up to Christmas, they're going to know something is up. Plus, if I really follow through on the whole Christmas postponement thing from now on, I know it will be exhibit A during my kids' group sessions describing how their parents ruined their childhood for them. "Oh, yeah? You think your mom was crazy? Well, mine was so superstitious that she pretended Christmas didn't happen until April. That's right, the Christmas tree came out with the daffodils. Cuckoo!" So bring it on, Christmas. We've taken you before, and we'll take you again. I believe that Anni will be just fine. I believe that Anni will wake up and be so pissed that you have come and gone already while she was sleeping. So watch your back, Christmas. Anni's got a long memory, you know. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ If you've made it through all the weep and whine above, then you deserve some real Christmas spirit. So here's my Christmas wish for you: Find someone near and dear to you, and give them a hug. But not the usual arms-resting-lightly-on-the-back kind of hug. Pull them hard against your chest and rest your head on their shoulder or chest, depending on the height differential. Then hold that position, tight, until it feels right. OK, you might get some funny looks. If you feel like being mysteriously obscure (really really obscure), you can say, "Hey, it's a Frankie thing." If you're feeling more straightforward you can just say, "Hey, I love you." So it's sappy. So what? I hope it gives you as much peace and joy as it gave me. Merry Christmas.

Santa's off the hook

2005-12-22T11:25:00.000-06:00

Last night I made a playlist with the mix cd's that have come in the mail for Annika. I love those notes about your own children, and how they love this particular song or that. Sharing the music that calms your own soul, or soothes the wild streak that seems to pump through your child's very being, is a lovely and intimate gift. So, thank you. This morning she woke up at her usual time and did her usual squirm in the bed, which really gets her traveling since the covering of her air-bed is gore-tex and just right for sliding. She waits for us to scoot her back up again (her bed is on a slight upward incline to help with breathing), and then repeats the trick over again. Sometimes we take her legs and help her to stretch and move them, gently flexing her foot up and down. We take off her arm immobilizers, and stand cautious guard over her breathing tube. This morning, though, nothing we were doing seemed to make her happy. One of the difficulties of being on the ventilator is that you cannot speak, since the breathing tube passes the vocal cords and keeps them from vibrating. So communication with her is one giant game of 20 questions, in which "yes" and "no" are the only possible answers, indicated with nods and shakes of the head. We were going over every possible body part that might be bothering her, only to see her shake her head emphatically, when I finally thought to ask her, "Do you want us all to be quiet so you can listen to your music?" A relieved nod of her head. The song that began playing at that moment was The Innocence Mission's version of "Edelweiss." She raised her eyebrows, eyes still closed, in an expression that I take to be the soundless version of a sigh, and relaxed into the sound. You've heard of people living in the same household beginning to synch up, or even beginning to resemble one another? Could there be something like that at work with Annika and her glass wall PICU neighbor, Matthew? Last night Annika's hemoglobin held steady and she just looked much better. And Matthew last night finally slept comfortably for the first time in weeks, with no major drama through the night. Today I'm heading home to get a Frankie fix. I'm going to bring her and my mom back to Chicago with me on Saturday morning. Jörg and I will divide our time between Frankie and Annika on Christmas, making sure that Annika is never left alone, of course. It's impossible for me to be such a grinch when I've got my little Frankie around, so no more jokes at Santa's expense. (But don't hold me to that, please.)

up and down and back around

2005-12-21T16:17:00.000-06:00

So my jubilation over Annika's rising hemoglobin was shortlived. Yesterday evening she dropped again and had another transfusion. But the transplant surgeons are happy with how the gaping wound in her abdomen is healing. I can't call it an "incision" right now; that just sounds too normal, too closely related to a paper cut. I think my foulish mood is due to the nightmare I had last night, which involved lots of blood and being trapped in a theater that resembled a scary McDonald's (not that those places aren't already a bit scary already). In the middle of the night I left the room to go get a drink of water, and saw that the dialysis machine had been removed from our PICU neighbor's room. So I smiled a bit to myself that my friend's wish had come true (removing at least one machine before Christmas). Then Jörg brought in the coffee this morning bearing the news that the machine had actually malfunctioned, and they had actually had a very rough night. Sending nothing but healing wishes to Matthew.

chloral hydrate is your friend

2005-12-20T14:28:00.000-06:00

After nearly maxing out her allowable morphine and versed dosing, chloral hydrate was added to her sedation arsenal last night. And, finally, peace settled over the room. A massive-quantity-of-drugs-induced peace, but whatever. Actually one of our PICU nurses, Genny, suggested this option days ago. But, you know, our PICU nurses rock. Hard. And I'm not just saying that because, evidently, they are reading these entries (Hi, guys!). They really are amazing. Our experience in the PICU this time has been so much better than our memory of the PICU pre- and post-transplant. And it's mainly because we haven't felt that the nurses' job description includes the line, "Chase parents away from bedside." (And I should have noted that my PICU Parent/Nurse "manifesto" was actually just my thinking after a conversation I had with our nurse about the difficulties that might arise from allowing parents more participation in PICU care. In particular, how to deal with the touchy issue of teaching parents how to be good PICU parents. It's not as if it's covered in the "What to Expect..." books. So it was actually a lot less dramatic than "manifesto" made it sound. But, like Annika, I tend to go for the flourish. Still, I'll send it to those of you that asked, including the additional suggestions from other parents.) So last night was wonderfully serene. Her hemoglobin was again dropping and the blood bank had blood on hold for her, but then (Christmas miracle!) her hemoglobin, at the very border of too anemic, began rising again. We haven't seen her hemoglobin rise spontaneously (i.e. without transfusion) in weeks and weeks. Not only was that great news in itself, but also meant that she avoided having to have another I.V. placed to give the nurse sufficient access for all the stuff being pumped into her. ~~~~~~~~~~~~~~~~~~~~~~~ I can't call it a day, though, without indulging my obsession with ventilators. My erstwhile PICU neighbor and I were yesterday discussing the difficulty of constantly readjusting your goals to deal with the setbacks and general slowness of recovery for a critically ill child. (Remember my last goal, "conscious for Christmas"? Not happening, of course.) She told me that her new goal was to have one of the machines removed from their crowded room. Her son is on a ventilator, too, but he's also on dialysis and his I.V. double pole is even more crowded than Annika's, which really is saying a lot. When her son's doctor asked her which machine she most wished to be rid of, she replied without hesitation, "The ventilator." She told me that the doctor was surprised that she hadn't chosen the dialysis machine, since it involved a neck shunt and cycling the blood out of his body and was just so much more invasive. But I think I would have made the same choice. There is a difference between "life support" and being on a ventilator, but the difference, surely non-subtle to a medical professional, is more difficult for us to recognize here at the bedside. There is something so elemental about breathing that any type of machine support leaves us feeling our child is more vulnerable. While I know in my head that a functioning liver and kidneys are necessary to sustain life, their functions are hidden and their jobs more difficult to describe. But the breathing of the lungs and the beating of the heart, their functions are clear and I can see and feel them working so easily. Who doesn't remember the magic of first learning to feel your own pulse? And watching a chest rise and fall as a sign of life has been immortalized in songs and poems over and over. The ventilator, such a commonplace to PICU professionals, stands as a threshold to a boundary we parents would rather avoid. So, yes, I'd choose the ventilator, too. ~~~~~~~~~~~~~~~~~~~~~~~~ Some questions that have been asked and not answered:

Amanda asked if Annika's abdomen had been left open before. Yes, it has, after one of her transplants. However, it was only for around 5 days, not this crazy 3 weeks stuff that they're talking now. Amanda also was wondering about the mystery of Annika's bleeding issues. The source of her bleeding is no real mystery: huge esophageal varices. The only mystery is why she still has varices after the shunt surgery, when the shunt appears to be working. The doctors did some research and found that there has been a case of a shunt taking 4-6 weeks to work. So we'll hope she's taken that route, rather than having vascular issues that the shunt has not corrected, which is another possible explanation. Meanwhile, the bowel perforations and the massive abdominal infection have taken center-stage as cause for concern, and we've not been talking much about her bleeding. They are planning to rescope her in 5 weeks, assuming all is going well with the perforation and infection.
Do I teach writing or English or composition or something along those lines? Nope. Those gigs are hard to come by, you know, and for some crazy reason they tend to give them to people who are actually qualified in that area. I teach a computer programming course, and not even a hard-core programming course, but the gentle introduction offered to students who are otherwise completely uninterested in computer science. My proudest instructional moment was when I decided to teach the formal conditional structure by creating a virtual bar bouncer. I am, though, a big proponent of writing as therapy. Not just writing down the facts, but trying to shape them into a narrative and draw connections with larger ideas and other experiences. That's why I started the Postcards from Holland site, which I am sorry to say I have sadly neglected. Although the ease of starting your own blog has made such an endeavor somewhat unnecessary.
Would we enjoy visitors? Yes, Sarahlynn I would love to meet you. My social calendar is, surprisingly enough, completely open. Of course, please come by only if you're all healthy. Obviously Annika shouldn't be exposed, but any sickness I might contract would be too easily passed onto her before I even showed any symptoms to indicate that I should stay away.
How do you stay sane in a situation like this? I have this game that I was playing with some of the nurses, but I have kept with it long after everyone else has grown bored: I try to come up with celebrity look-alikes for each member of our medical team. I think I'm going to have to subscribe to People or Us magazine, though, if I really want to take my playing skills to the next level. Mainly Jörg and I indulge our penchant for dark humor. Examples:
- When Dr. Superina came out of surgery to break the news that the rex shunt wasn't going to work and they were going to do the distal splenorenal shunt instead, he drew a diagram of her anatomy on a white board to explain the problem with the rex and how they were going to do the alternative shunt. As we sat together in the lounge afterward, we mulled over the information. "So I guess this other shunt is easier...At least it looked that way on the board." "Of course it's easier. Didn't you see? He just has to erase a few lines! No big."
- When the respiratory therapist came by today to do Anni's treatment, which normally involves banging around a bit on the back to loosen congestion in the lungs, we expressed some concern about getting to Annika's back while her abdomen was still open. "OK. We'll just roll her over and ask her to please put her hand right here and hold everything in!" "Make sure you've got Dr. Superina's page number close by. 'Dr. S! I think we lost something over here!' " "Does this go back on the left side or the right?" The respiratory therapist shivered and said, "Oooo. You're putting my back in knots!" Then she was paged away, and we haven't seen her since.
Did Jörg really beat up Santa Claus? What a silly question. Of course not. We just egged his sleigh.

next time with a marching band

2005-12-19T17:37:00.000-06:00

They took Annika back to the OR early this morning. Because she is on the ventilator, it was a regular parade out of the PICU. She was wheeled down the halls in her new airbed, which is larger than a regular hospital bed and steers with the precision of an 18-wheeler on flat tires riding a mudslide, followed by an anesthesiologist squeezing a little bag to push breaths into her, while trailing her double I.V. pole flashing lights and beeping joyously, while Dr. Superina brought up the rear like the grand marshall. Because it was so early, and the night before so long (Annika started kicking like a Rockette every few hours to see if maybe she could shake off the sedation), I had not yet had a shower. But Jörg had at least brought me a large coffee, bless his caffeine-bearing heart. After abandoning the parade at the doors of the OR, I ran back to the room to retrieve the cup left behind. Her room, emptied of her bed and the various I.V. pumps, looked so spacious and open. But the ventilator was still there and soldiering on, puffing its breaths without benefit of lungs to receive them. It was a bit sad, all that useless breathing. Jörg and I sat in the surgical waiting room together, watching the clock and catching bits of cell-phone conversations. One tall woman wearing the kind of corduroy skirt that only looks good on the blessedly svelte, was making lots of calls and repeating the same information over and over, losing none of the stunned tone of disbelief with each repetition. Knowing the hospital as well as we do, it was clear that her daughter was going up to short stay after her surgery, which meant she might even go home this evening. Funny to realize how far we have come, when the prospect of weeks of intubation and an open abdomen doesn't even elicit that tone of shock in our voices anymore. When the tall woman called her own home, she followed up her usual recitation of the medical facts with a barrage of questions of her own. "How are the twins?" she asked. She nodded her head eagerly as she listened to the reply. "What time did they get up this morning?" A few seconds later she repeated more insistly, "But what time did they get up this morning?" I knew what she meant. Not knowing such basic facts as the time your own children awake in the morning is a strange feeling, made even stranger when the surgical waiting room of a children's hospital is an alien environment. We were practically in home territory, though, and less worried than we'd been many other times in that room. My old rocker had been moved into the waiting room, and I settled into its familiar seat. It was the rocker that was brought into Annika's hospital room before her transplants, and we spent many hours in that chair together. I gave a silent thought for Lauren, the little girl commemorated on the plaque adorning the chair, whose loved ones hope we remember to cherish each moment of life. Barely an hour later, she was back out again. The sutures in her bowel had held together, and the infection was showing improvement. Altogether, nothing but good news. Still, the surgeon told us that the earliest she will be extubated is sometime next week, assuming she continues to improve at the current rate. And he estimates it will take about 2-3 weeks for her abdomen to be closed. So patience is the name of the game around here. The return parade was even more jovial. I suppose there was relief that Annika, with her abdomen so often hiding unexpected (and frequently unpleasant) surprises, was showing nothing but improvement. After finally getting a shower and lunch, I headed to the hospital lobby for a coffee. Rounding the corner I saw that the hospital had set up Santa Claus, complete with a red throne and elves. He was surrounded by wiggly children, all murmuring, "Santa!" and eyeing the presents he was handing out to each child. They were all so excited and happy, and (wouldn't you know it?) I started to cry. I can pretend that Christmas will happen in February this year, but the rest of the world is carrying on with the usual calendar. As I entered our PICU room again, my emotions back in check, Jörg stood up and announced he was going downstairs to get some hot chocolate from the cafe. "OK, but there's a Santa down there," I warned him. He looked at me quizzically, clearing not understanding what I meant. A little embarrassed, I explained, "He made me cry." "Santa made you cry?" I nodded, beginning to realize that perhaps my warning was a bit unnecessary for someone not awash in PMS hormones. Jörg cocked his head and gave me a concerned look, "Do I need to beat him up?"

not enough content for a title

2005-12-18T16:15:00.000-06:00

I am so enjoying reading over the songs suggested below. Some of them we already own, and I will just have to send Jörg on an expedition to track the cd's down when he gets home. Keep the suggestions coming! I'll keep checking the comments below. I'm going to have a very good time putting together a playlist for Anni's total relaxation and enjoyment. Julie has sent me an iPod to put this music on and, unlike the little mp3 player I'm currently using, it includes the cord to hook up to Jörg's laptop. So I'll be able to transfer music on CD over to the player. And, again unlike my current player, it will play music from iTunes. So I really should be able to make this playlist happen. Plus some of you have been asking again for our address, so I thought I'd just add it over on the sidebar so it doesn't keep sliding off down the page. It's the address at the Kohl's house, since we sometimes shift between rooms at the hospital. Today I wrote a little manifesto outlining my ideas for optimizing PICU nurse/parent relationships. I just never quit. Drop me a line if you're a medical frequent flyer parent and would like to have a copy or add your own suggestions.

aural therapy

2005-12-17T16:44:00.000-06:00

So how about sending your suggestions for songs you think Annika would enjoy hearing and find soothing while she's on the ventilator? Songs that remind you of her? Or songs that you love yourself and would enjoy passing on to a 5-year-old who falls in love with music so very competely? Don't worry about the lyrics needing to be uplifting or inspirational (although we've nothing against inspiration around here) - the girl goes for the dramatic and the melancholy, perhaps even more than the sweet. It'll be her personalized playlist, and I can print out the song titles, and note who passed the song on to her. I love this idea. So click on the comment button and suggest away.

just because it's another day

2005-12-17T16:35:00.000-06:00

I'll post. But there've been no changes. Our nurse described her condition as "critically stable." But we have passed the crucial 24-hour mark, when we would have had some indication if the infection in her tummy still had the upper-hand. Although she has not been fever-free, and there is still blood in the stools that she passes (uncomfortably), she has not required any more blood or extra fluids. The dressing on her tummy is a bit gory with infected fluid draining out of the unclosed wound and soaking the pads pressed against her side, but when she awakes briefly from the sedation she shakes her head when we ask if she hurts. The doctors have had to go up on her ventilator support, but no one is surprised about that, nor the fact that her morphine and versed requirements have skyrocketed. Her main issues right now are:

anger at awaking to find a breathing tube down her throat (and taped so thoroughly her mouth is nearly completely obscured - I guess her adventure in self-extubation was duly noted back in the O.R. For extra security, her arms are in immobilizers so that she cannot bend at the elbow to reach the breathing tube.)
itching, the morphine and dry air are likely culprits
a nearly irresistible urge to roll over. She's never much for sleeping on her back, and having a tummy full of fluid does naturally predispose you to roll over and relieve the pressure on the back. Obviously, though, a 12-inch wide open incision across your belly means back-sleeping is the only option. The nurse yesterday arranged a super-cool airbed for her, which is supposed to help avoid pressure points and offers the added bonus of adjustable temperature and built-in weight scale. She still struggles to turn over, though, and I'm not sure how much sense our attempts to calm her and explain the situation make through her morphine/versed haze. At one point I commiserated with her aloud, "Your tummy's getting better, Annika. But it's really hard work getting better, isn't it?" To my surprise, she nodded her head vigorously in agreement.

Most importantly, though, her doctors are all very pleased with her condition right now. I toyed with the idea of driving home after Jörg returned today with his exams to grade. Since she seemed to be doing well, and the plan was to keep her completely asleep, we thought maybe this would be my chance to get back home to see Frankie, engage in some therapeutic cat-petting, grab some clothes, and generally reassure myself that life outside the hospital was puttering along as usual. But of course, Annika, bursting with energy in her usual daily life and then confounding her medical team by sitting up and playing in bed despite a massive abdominal abscess and a perforated bowel, is never easy to keep sedated. Around 5 a.m. she started thrashing and reaching for me when she heard my voice. She settled down again briefly, only to have another fit, longer this time, at around 10:30. So I will stay, since I cannot stand the thought that she might awake, confused and looking for me, and not be able to hear me respond to her. So more watching Annika breathe, now with the smoothly regimented regularity of the ventilator. The ventilator is such an amazing machine, but it tempts me into thinking about my own breathing way too closely. I put my hand on my chest and feel it rise and fall, and somehow it no longer feels like a natural activity. It seems exhausting, all this continuous effort of pushing in and out, over and over without fail. And this leads to that kind of vertiginously weird feeling that I remember vividly from the year I began kindergarten, when I became so self-conscious that I could make myself dizzy simply by imagining myself sitting somewhere behind my eyes, like a little mini-Moreena homunculus completely separate from the body that everyone else saw. Yes, reliving kindergarten memories is a clear sign that some mental distraction is needed before I burn a hole through my belly-button with my own x-ray vision. Usually there is very little time to read in the hospital, given that Annika might gently be classified as "highly interactive," even when confined to bed. I could use this time to catch up on reading my sidebar links, and finding new links to add, but there's no internet connection in this PICU room, where I'm now writing on Jörg's laptop. So last night I blazed my way through all the New Yorkers that Jörg brought from home, and then I discovered this morning that Ursula Le Guin's The Left Hand of Darkness was in the Kohl's House book lending box, so now I'll finally have a chance to read a book that's been on my list for, oh, years now. We don't expect much happening around here tomorrow, but are waiting anxiously for the findings on Monday, when the surgeons will go back in to inspect her progress. So I may spend tomorrow improving my brain with Le Guin rather than indulging my navel-gazing with more entries contemplating ventilators. ~~~~~~~~~~~~~~~~ And thanks to those who've sent cards and packages. If you've not heard back from me, it's probably because we haven't opened them yet. I've been planning on waiting until she's awake and feeling good enough to really enjoy the feeling of ripping open the envelopes and peering inside. So there hasn't been much opportunity since she's gone in for her shunt surgery on November 29, although she had been opening them one or two at a time in the days before she went back to surgery last week. Mostly I have just decided that Christmas will just have to be postponed this year. I've never been one for standing on tradition, anyway, so I'm thinking that putting up the Christmas tree when we get home in, say, February is a fine idea. Meanwhile, I'm going to put up a big sign on our door forbidding anyone to say "Merry Christmas" or anything along those lines, especially if she's still intubated. It's clear that she hears us, and I don't want her fearing that she's missing out on all the fun because of that damned tube. And thanks for visits from friends: Jennifer and Becca and Sarah are fantastic mothers, whose quick visits remind me of all those who understand too well life with liver disease, and a visit from Running2Ks after she donated blood at the hospital offered proof that the internet friends I've met here really do exist. Really, really. I hope I'm saying "thank you" enough right now, to my dad and my mom, who's been caring for Frankie and the cats; and my sister, who brought me a soft sweater in that way that says "love" and thrilled Frankie with her hugs and attention and voice that sounds so comfortingly like mine; and to the amazing doctors and devoted nurses caring for Anni round the clock; and for the lovely emails I've gotten, with personal stories intertwined with words of encouragement. So, thanks. ~~~~~~~~~~~~~~~~~~~ And, finally, Jörg received word, in a letter so laudatory that I'm going to have to send a copy off to his mother and father knowing full well that parental pride knows no age limits, that he has been accepted for tenure and promotion at his university. Whew.

all's calm

2005-12-16T12:31:00.000-06:00

It's hard to know what to do for Annika right now. Because she is intubated and her abdomen, all the way across, was left open after surgery yesterday, the ICU doctors are working very hard to make sure that she is fully sedated. For the past couple of weeks, I've been crawling into bed beside her, turning myself sideways and scrunching up against the rail to give her the most space possible, while still offering her the shelter of my body. She's gone to sleep with her face pressed to my chest nearly every night that she's been in the PICU. But now there is no room for me beside her. The ventilator takes up one half of the bed, and her I.V. lines are pinned to the other side along with her N.G. tube (the tube that goes into her nose and down to her belly). At least she is no longer paralyzed, although they do have her arms in immobilizers to keep her from pulling another extubation trick. On the one hand, I'm hoping that she is completely unaware of all that's in and around her right now, but on the other I do hope she knows that we are here with her. Jörg is going home today with Frankie and my parents. He'll come back tomorrow with his final exams to grade, but Frankie will stay home. We're thinking about bringing Frankie back here for Christmas, although Annika will still be in the PICU. We long ago gave up on the goal of being home for Christmas, but our new hope: conscious for Christmas. I spent last night with Frankie while Jörg slept in the PICU with Anni. It was great to spend so much time with my little one, and to have her fall asleep on me, pillow mama. My dad made her some spaghetti for dinner, and we sat around the table watching her eat. After she had finished her bowl, and snagged some from her Grandpa's plate as well, she looked at me thoughtfully. "I want to go home," she said, enunciating each word carefully, as if she had been rehearsing the sentence in her head to make sure it was well understood. "That's a great idea!" I enthused, "Daddy will take you home tomorrow, along with Grandma and Grandpa." She absorbed this news, nodded her head, and then clarified, "An you come wis me?" "No," I shook my head sadly, "Anni is still very sick and I need to stay here and help take care of her." "Nonny needs medicine?" "Yes." "Where is Nonny?" "She is sleeping. In the hospital. She needs to rest to get better." "OK," she nodded decisively. "I go sleep wis Nonny." And so more explanations that she listened to with her much too serious face. It's hard to say how much she understood, but I tried anyway. So right now I'm watching Annika laying in her bed breathing in rhythm with the ventilator. The night nurse took the opportunity of heavy sedation to wash her hair, so her bedhead dredlocks have been replaced with lovely curls. The little hippie refused all our entreaties for cleaning and combing that matted mess last week. We're listening again to the selection of sleeping music she chose for my mp3 player. Unfortunately, we never foresaw a long-term ICU stay, and so we only put 25 minutes of quiet music in the lullaby folder. The rest of the memory in the player is devoted to the fun music that allows us to turn our hospital room into a "party room," as Annika calls it. Right now the goal is relaxation and sedation, so I just keep playing those same 25 minutes of quiet music over and over, standing up and backing it up to the beginning every time it cycles through, since our cheap model doesn't allow an automatic repeat if you've organized the music into folders. I know some of you have been asking if there's anything we need, and here's something that would be handy. If anyone has a cheap mp3 player (I think Amazon has some with 128 MB for $30 or so) and access to some lovely acoustic music to put on it and wouldn't mind loaning it to us for the PICU stay, that would be just wonderful. I could very easily drop it back in the mail for you after we're out of here. Thankfully, most of our nurses enjoy the music, but the same 25 minutes of music over and over can drive anyone batty. And then there's the fact that Annika, with her well-developed dramatic streak, chose some rather depressing songs to include in her go-to-sleep playlist, which can leave me rather teary. Here's the playlist she selected as the most soothing: "Tell Me Why" Pat Benatar "Gartan Mother's Lullaby" Meryl Streep (I know! I was surprised too, but she has a lovely voice) "Reason to Believe" Kelly Willis "I Love, I Love" Dar Williams "Family" Dar Williams (a cover, Cliff Eberhardt?, bring on the hankies) "A La Nanita Nana" Tish Hinojosa "Be Still My Soul" Paul Schwartz (Lisbeth Scott, vocals) "Prayer in Open D" Emmylou Harris "Last Night" Lynn Miles I love her taste: she goes mainly for the acoustic stripped-down sound (So, for instance, she only really loved "Be Still My Soul" on that Paul Schwartz album, and it is certainly the least electro recording of the bunch), and she is a sucker for a lovely melody, particularly those melancholy minor-key ones. We certainly would have included the Sara Hickman Newborn songs, had she not just been listening to that CD at night before we came, and decided to change it up a bit. ~~~~~~~~~~~~~~~~~~~~~~ So now we just wait patiently and try to keep Annika relaxed and comfortable. We watch for signs of healing, and hope nothing else goes wrong. The doctors, at least, are all smiles and relief that they finally have a known problem to address. I usually share a cup of tea in the afternoon with our PICU neighbor mom, and we compare notes and cry a little together. Then we head back to our glass-walled rooms and hold our children's hands and give thanks for hope and the warmth of little fingers.

humble

2005-12-15T17:56:00.000-06:00

I just ran a spell-check on my last post below, and my Mac's TextEdit program suggested "Superman" instead of "Superina." As a very well-known and respected transplant surgeon, I doubt that Dr. Superina needs any such ego-boost. But just to be sure he stays grounded, Annika wanted him to know that, after her last surgery, her surgical staples were placed unevenly. Totally unacceptable. She is hoping that the next round of staples shows a more professional level of symmetry and spacing.

she's full of surprises

2005-12-15T17:32:00.000-06:00

As late as half an hour before Annika was wheeled into the O.R. today, her surgeon was debating with himself whether or not it was a good idea. It's fascinating to watch the back-and-forth thought process of someone as high-powered as Dr. Superina, although also, as a parent, a bit disconcerting. The fact of the matter was that she did not look like someone who was suffering from a massive abdominal infection. She had spent the morning dressing and undressing her tiny Ariel doll in her many strange little rubber outfits, and discussing the various shapes of cookies she would eat "when her tummy was fixed." But the results from interventional radiology yesterday had them worried that perhaps they were missing a large infection that could turn very dangerous. Then there was also the fact that the results from the lab had come back, and the version of E. coli that had been cultured from her abdomen was susceptible to pretty much any kind of antibiotic. In fact, this bug was so weak that even a mean look from a lab worker could kill it off. While it's good news that she didn't have some sort of super-bug, it was worrying that the high-powered antibiotics that she had already been on for a week hadn't cleared the infection. This most likely meant that the infection was located someplace that the antibiotics just weren't reaching. But on the other hand, Dr. Superina wasn't looking forward to going back into her abdominal booby-trap and working his way through all those newly-formed adhesions without knowing for sure that such a drastic measure was called for. Finally he just threw up his hands and said, "OK. Let's take her back." Annika engaged in her usual procrastination tricks to delay having to leave her room, but overall she took the news relatively well as we explained to her what the doctors had to do. They wheeled her off to the O.R. after I leaned down and sang "Twinkle, Twinkle Little Star" softly into her ear, which is our new way for me to "put my voice inside her head" in case she gets scared. Clutched in her left hand was her new lucky stone, a smooth resin-encased organ donation ribbon that she got in a package from Riley and Shelby. The doctors told her that they would put it in a bag that they would keep by her head throughout the surgery. A little over an hour later, we saw her PICU nurse running by, stopping just long enough to report, "She has a huge abscess and will need to stay intubated." Annika was rolled out of the O.R. 10 minutes later, and we had a chance to talk to Dr. Superina. Again, we saw that look on his face that said he just couldn't believe how difficult our little girl can be. She did indeed have a very large abscess in her abdomen, and they also discovered that her bowel was perforated. Because of the massive infection, they were unable to close her abdomen back up again. And the hole in the bowel will likely be very difficult to close. They are planning on taking her back to surgery on Monday to change the packing in her abdomen and to check whether or not the suturing of the bowel has held or not. If all goes well, they might be able to start the very slow process of closing her back up again in a week, but it's going to take a long time to accomplish. Meanwhile she will need to stay on the ventilator and be paralyzed for her protection. Since she is going to have an open abdomen for a while, Jörg is going to take Frankie and my parents back home tomorrow. We'll need to be careful about minimizing her exposure to germs until she can be closed up. And it's not like she's going to be up for a lot of company for a while, anyway. I'm awfully glad that we took Frankie and my mom back for a visit with her before they took her back this afternoon.

back to surgery

2005-12-15T14:50:00.000-06:00

Annika is back in the O.R. right now. After the fluid tap in interventional radiology yesterday, it was discovered that she has yet another type of bacteria (not yet identified, but different than the earlier discovered E. coli) infecting her abdomen. So they are going to open her abdomen and attempt to clear out all the infected fluid. We are nervous about her going back into surgery again, as it is never very easy for the surgeons. The surgeon called this "rebooting the computer."

figuring it all out

2005-12-14T16:07:00.000-06:00

As Tabitha reminded me in the comments, a lovely picture of Frankie and Annika from last Christmas graces the cover of the latest issue of Parentland magazine. I haven't seen it yet myself, since we've been in the hospital since it came out. I read the on-line journals of several of the contributors to this magazine, though, and love their writing. Highly recommended all around. And for those of you in Chicago, Children's is having a blood drive this Friday. You can schedule an appointment at www.givelife.org, using code 3308 to identify the Children's drive. Drop me a line if you're donating, and I can pop out of the PICU for a meet-up. Annika has certainly required so much blood, it would be nice to know that some is being given back with her in mind. I wish that either Jörg or I were allowed to donate. Otherwise, no change and no news. Annika is still bleeding, and still requiring transfusions on a regular basis. She is still fighting an infection in her abdomen, and the regimen of 3 intravenous antibiotics plus an anti-fungal does not seem to be having much effect. The bacteria has now at least been identified: E. coli (if you look at that link, the section pertaining to Annika would be the one labelled "intra-abdominal infections." This is not a contaminated food type of infection.) But one of the antibiotics she's been on for the past week should have already been clearing up the infection. So she either has some sort of super-bug version of E. coli in there, or they will need to go back to the O.R. to open her up and try to clean up all the infected areas. Obviously, we are all hoping to avoid another trip back to the O.R., as she has just gotten over the pain from her surgery 2 weeks ago. But even if they manage to get the infection under control, there is still no good explanation for Annika's continued bleeding. I did ask, finally, whether a retransplant was on the horizon, given that the shunt has not solved the problem of her esophageal varices. The surgeon's answer was both comforting and horrifying at the same time. No, he does not think a retransplant is likely, given how wonderful her liver looked when they opened her up. And besides, it's not clear that another transplant would clear up the problem of her bleeding varices, anyway. So, hooray for a healthy liver, but it's odd for us to be facing a problem that has no known solution. Facing a transplant is certainly no fun, but at least it offers the hope of healing. Right now, we are trying to get used to the feeling of just waiting and hoping that it all turns around, with no clear game plan. And I still haven't figured out if this is a better place to be, or not. Surely everyone agrees that she simply cannot go on bleeding like this. Meanwhile, Annika is trying to figure it all out, too. A few weeks ago, Annika was snuggled in next to me in the hospital bed. "Mama, I am so sorry." "Sorry about what, sweetie?" "I am so sorry that I fed Frankie the cat's medicine." I hugged her close and told her that, while that was a very bad thing to do, it was over now, Frankie was O.K., and we knew that she would never, ever do it again. Later it occurred to me that perhaps Annika was searching for something she had done wrong, some reason that she was being put through all of this. So when Annika, weepy from the leftover sedation from a procedure to pull fluid off her belly, cried, "It's all my fault!" I spent the next 10 minutes explaining to her that she had done nothing to deserve this. And, for once, the classic childhood line, "It's not fair!" was absolutely, undeniably true. Less the whine I wish it were, and more an understatement. (And, by the way, that was the great, untold story of Frankie's first trip to the E.R. Frankie, evidently, begged her sister for some medicine, jealous of the 15 pills she saw Anni take at various times throughout the day. Annika, always happy to oblige her sister, decided to give her Hepburn's thyroid pills. Normally, I keep those up in an unreachable cabinet along with Annika's pills. But on that unfortunate morning I had left them out, and a childproof cap is no obstacle for Annika. Upstairs hanging lights in the girls' room, I heard the commotion and went to investigate. I was pretty sure I had come upon the scene before Frankie had swallowed too many, if any at all. But there was no date on the bottle we had gotten from the vet, and therefore no way to count the pills and determine how many were missing. So off to the E.R. for a charcoal milkshake for Frankie.) So now I've been sure to remind Annika at regular intervals that none of this is her fault. Having satisfied this concern, Anni has now turned to trying to figure out our role in this whole mess. Last night she told me that I was supposed to tell all the doctors and nurses and everybody not to touch her unless she said it was O.K. for them to touch her. Obviously we are not quite living up to the parental role of protector right now for her. So more explanations, some of them acceptable and some of them met with the raised eyebrow and scrunched-up eye that says she's not quite buying it. Yesterday's sedation left her particularly willing to express her fears and concerns to us. One of the doctors here described the feeling of that drug as being something like "two martinis in quick succession." She cried, and clung to my neck, and really got down to the heart of the matter. "Why do these things keep happening to me? I want to be back to normal. I want to go home." I cried along with her, and I put her to sleep that night by curling my body around hers and whispering in her ear, "Annika is safe. Annika is safe. Annika is safe..." She drunkenly nodded her head and whispered, "safe," with me. Until she finally opened her eyes and said, "OK, you can stop saying that now. Goodnight." And then she slept the whole night through for the first time in weeks. But of course it's Annika we're talking about here, so it's never all tears and self-pity. She had been gifted a Barbie to sweeten the prospect of yet another trip back to interventional radiology, and she clutched it tightly in her hand as they wheeled her bed away. As they were readying the sterile equipment to begin the fluid tap, she held our her hand and asked me in a slurred voice, "What's this?" "It's your Barbie. That's Barbie as Elina. From Fairytopia." "Oh." She pulls the Barbie in close to her face and then back out again. "It's so BIG!" A few seconds pause, then she adds, "I thought it was a scrub brush." Somehow I doubt Barbie's manufacturer, Mattel, is going to run with that idea. Barbie as Princess Scrub Brush: Making the world a better place, one toilet at a time. She returned from interventional radiology 15 minutes later, fluid still sloshing about in her tummy. They were unable to do the tap because they couldn't get her to go under. "I don't want to sleep!" and she thrashed every time she felt the lidocaine-filled needle on her tummy. The radiologist, nervous at the prospect of inserting a large-bore needle in a moving abdomen, asked for more sedation. Finally, having used the maximum dose of sedation allowed without an anesthesiologist present, they gave up and rescheduled for today. She will be put out completely by an anesthesiologist. Or so they hope. Two hours later, to the amazement of her nurse, Annika was still awake and chatting, albeit sounding like a party girl at 2 a.m. the day after her 21st birthday. Cuddled up in the bed next to me, she put her hand over her incision. "There you are! My good friends. You went with me, didn't you?" Thinking that she had invented some more imaginary friends like her pre-surgery Esmerelda, I asked who she was talking to. "Oh, they're here on my tummy." Her finger began moving affectionately over each metal staple in her stomach as she rattled off a long series of names. Yes, the girl named the staples used to close her incision. I guess we're going to have to ask the surgical team to save them for her after they're removed. I'm not sure what kind of habitat surgical staples require. Maybe they'll be happy living in a zip-loc bag. So right now we're in a kind of PICU limbo. She's too sick to leave the unit, but no one knows exactly how to make her better. In an effort to reduce her anxiety, we have a sign on her door requesting that the doctors save the medical talk for out in the hall. Either Jörg or I go out with them when we talk things over. As the child-life specialist pointed out to us when we asked for ideas to help relieve Anni's stress, kids tend to listen to the medical talk, and just fill in the gaps that they don't understand with stuff from their own little heads. "And," she concluded, "little kids have all sorts of scary stuff, like monsters, in their heads that they use to explain things they don't understand." I can't say for sure that I've outgrown the monsters myself.

"shit" is totally devalued

2005-12-12T13:34:00.000-06:00

through overuse around here. Annika's bleeding started up again last night, even though she is still on the highest dose of octreotide she has ever been on. She did need yet another transfusion of both whole blood and plasma, but it doesn't look like this one is going to be as bad as the last one. Still, we know that she cannot simply go on like this, and the question mark over all the doctors' heads is practically visible. At least they have finally gotten a positive hit on a blood culture, which will let them know what kind of infection they are trying to fight in her swollen abdomen. In the meantime, they have her nicely stabilized, and so I'm not in the panic that I felt last week. Our PICU neighbors, though, are in a much more painful and dangerous place. I know the family from the Kohl's House, and so we chat and share tea and coffee. If you're sending prayers or well-wishes our way here at CMH's PICU, be sure and include a thought for our companions on the other side of the glass wall.

the healing power of...

2005-12-11T17:23:00.000-06:00

Frankie! Last night Jörg brought Frankie up to Chicago, along with my mom and dad. I practically ran to the double doors of the PICU to meet Jörg and Frankie. It was one of those happy tears moments. I took Frankie in my arms and held her tight against my chest, marvelling at how much her hair had grown and laughing at her new favorite phrase, "Hey, guys!" I brought her into Annika's room, and, to my amazement, Anni's eyes filled with tears, too. Of course, my first thought was, "Oh, no! She's in pain again." But Annika just held out her arms and said, "Hi, Frankie." After 3 days of Annika being completely non-verbal, except for the occasional "Please leave me alone! Everyone!", her voice was still hoarse as she launched into a conversation with her little sister. For her part, Frankie was not sure what to make of the all the tubes, lines, and monitors surrounding her sister. She perched in the bed next to Annika, wearing her serious hospital face. Anni, noting Frankie's reticence, asked, "What's wrong Frankie? Are you thirsty? Do you want a drink?" Frankie nodded a solemn "yes." And her sister, not having been allowed to drink herself for the past 5 days, asked the nurse to please bring a drink for Frankie. Anni handed the cup to Frankie, who took it with the care and respect usually reserved for high communion. ~~~~~~~~~~~~~~~~~ Deciding to have another child after giving birth to one with major medical issues is not an easy call. If Annika's liver disease had been genetic, we definitely would not have done it. Even so, we still held our breath during the pregnancy, knowing that the odds were on our side to have a healthy child but fearing, anyway. And now we have our little Frankie, robust and healthy and full of sweetness. But I do have to admit that this ordeal has been even harder for me, emotionally speaking, knowing that I had such a young one still at home who was certainly confused by Annika's and my sudden and complete absence. Annika, too, missed her new little companion and constant fan club, which perhaps made this all harder for her, as well. But seeing them together again for the first time yesterday was a revelation. No matter what the difficulties, their love for one another is nothing but good for them both. The lift in Annika's mood when Frankie climbed into bed with her was nothing short of miraculous, and Frankie's great care and extraordinary gentleness with her big sister speaks of a maturity and empathy that is a marvel in a 2-year-old. ~~~~~~~~~~~~~~~~~ Annika's bleeding finally stopped last night. She is on the highest continuous dose of octreotide that she has ever been on, though. The plan is to start weaning her off the octreotide slowly and carefully tomorrow, hoping that she will be off of it entirely by Tuesday without the bleeding starting up again. The doctors are still trying to find the cause for her mysterious fevers. All the blood cultures so far have been negative, but they decided to change out her I.V. access lines anyway, just in case they were harboring bacteria. The plan was to rewire her central line (up by her shoulder), and to completely pull her PICC line (those are both large, longer-term intravenous access lines). Pulling the PICC line was not going to be such a big deal, but rewiring the central line is something that kids are usually sedated for. But because the sedation drugs seemed to be raising her blood pressure, which could pop a varix open again, starting another bleed, they decided to do it without any sedation. I convinced them to let me stay in the room during the procedure since they weren't going to use any sedation. The nurse and I started hitting the button for her morphine pump, hoping to take care of the pain of pulling the stitches and resuturing. She held wonderfully still as she and I were draped together under the sterile surgical towels, but somehow the wire slipped during the procedure, and she lost the central line altogether. So today she had to go back to Interventional Radiology and get a brand new PICC line placed, and the old one pulled for culturing. They also tapped another suspicious pocket of fluid, still trying to find the infection that is causing her fevers. They also pulled her N.G. tube today, much to Annika's delight. That and a good night's sleep last night (finally) have made today a much more pleasant day all around for our girl. I know I have promised to put an Amazon wish list up for Annika and Frankie, and I will. But also know that, despite everything that's been happening, and despite the fact that we have been getting worried that Annika is becoming depressed and anxious (her uncharacteristic silence, and also she's begun picking at her lips and skin until they bleed, evidently a new nervous habit), we also know that Annika at least has the emotional support of a family that is able to be with her all the time. Which is probably what does her the most good right now. I'm sure that once she starts feeling better, the allure of all-mommy-daddy-all-the-time will start to wear off, and that's when the shiny plastic things will be the real mood boosters. And, of course, feeling Frankie fall asleep on my chest and watching her jump wholeheartedly into snow drifts is my anti-depression drug of choice right now. She's done wonders for my mood, although we are frolicking in the shadow of the hospital, and I know that I'm missing half of my little snow play team.

not quite 1000 words

2005-12-10T09:23:00.000-06:00

I haven't taken a picture of Annika since the surgery. I haven't taken any pictures of her on the ventilator, or shadowed by an I.V. pole decorated with bags and tubes and the festive lights of triple-line pumps. I haven't taken any pictures of her hugely swollen belly, or the large dressing that still covers her new incision, which follows the scar from her previous transplants. And I will not take pictures of her now, with the greatly detested N.G. tube snaking across her cheek and streaked with blood, which is being used to monitor her bleeds more closely. I will not take pictures of her little belly button, which is ringed red with the pressure of the fluid stretching it taut, but resolutely still an inny, much like my own belly button, when the pressure against it was Annika's own unborn baby self. I haven't taken pictures of her curly hair, rubbed angrily into the hospital pillowcase for the past 9 days until it has formed into little stalagmites rising perpendicular from her scalp, the gravity-defying dredlocks of a Trollz doll. I took pictures, many pictures, when Annika stripped naked and crawled up into the bathroom sink, taking advantage of the view afforded by the large bathroom mirror to see how she would look covered in 3/4 of a bottle of Vaseline Intensive Care lotion. I found her giggling as she slipped and sloshed greasily around the cool porcelain basin, unable to lift herself out of the slippery mess. I took pictures when she took the giant plastic jacks that she had "won" for holding still for an I.V placement (piece of cake), and carefully stuffed one in each of her nostrils and the openings of her ears, proudly showing off the look like it was the new facial ornamentation for Tribe Annika. I took pictures of her the first time she dressed herself, with her underwear jauntily displayed over her pants. I took pictures of her the first time she fed Frankie, yogurt dripping fetchingly from Frankie's chin and smeared up Annika's arms. Somehow these hospital images don't feel like the kind that should be placed in a photo album alongside the pictorial record of all those firsts and all those amusing antics of childhood. But I know this makes little sense. For one thing, I know of parents who have taken moving and beautiful photos of their children at their most physically vulnerable, pre- and post-transplant. For another, I have devoted more words to describing the hospital life and transplant experience than to any other topic. So it's not exactly like I'm letting these moments pass into amnesiac oblivion. I wonder what Annika, the future, mature Annika, would want or need me to do. Jörg brought me some magazines from home to pass the time while Anni sleeps. In last week's Newsweek, the My Turn article was written by a mother describing her efforts to reconnect with her teen-aged son, and to make sure that his typical teen feeling of carefree invincibility was tempered by a respect for both the majesty and the frailty of life. Will there come a day when Annika will want to see photos of her younger self with tubing radiating from her body in all directions, while the delicate tissues of her lungs inflate and deflate with gentle puffs from a bedside machine? Will there come a day when those images might teach her the lesson that life is both fragile and remarkable? Maybe I should just take a few pictures and then put them in an envelope marked, "Annika: for when you're ready." Or perhaps more accurately, "Annika: for when your mother is ready."

the varices strike back

2005-12-09T16:56:00.000-06:00

So the results of the scope are back and to everyone's shock, she has 3 new esophageal varices. Big ones. Annika's surgeon, Dr. Superina, came to the O.R. to view them himself, having expressed disbelief even when the doctors called him during the scope to let him know. In a way we are relieved that there is nothing wrong with her intestine and that there is not some new problem that she has to deal with. However, this does mean that something is not working with the shunt. Either the shunt itself is not relieving enough pressure, or there are some hidden veins that the shunt is not taking care of at all. If this all sounds weird and speculative, that's because it kind of is. I don't think anyone is going to talk to us about strategy until next week. I fully expect to hear the word "retransplant" mentioned in the first five minutes of that meeting. But, again, I could be wrong. Meanwhile, I am wondering if we will be leaving the PICU any time soon. In the good news department, I have heard that there is a spare room at the Kohl's house next week and I'm thinking of getting my mom to come up here with Frankie. Originally we were going to wait until Annika was out of the PICU and a little more mobile, but I'm not sure when that will happen. I've been gone with Annika since Nov. 14, except for that all too brief day and a half at home. Had I known that our stay at home would be so short, I would have spent much more time snuggling Frankie and much less time doing laundry and painting bugs on the girls' bedroom walls. So I've got some catching up to do with my youngest. Please know that I am reading all the comments, and I love reading them. It's good to feel the positive energy directed Annika's way, and reading so many well wishes helps my mood, too. So, thanks.

Waiting

2005-12-09T12:51:00.000-06:00

I spoke with Moreena today, and she is still waiting for different news. She appreciates everyone checking in, and she'll give an update later. For those who asked about care packages, the Kohl's House address is still good, and she's thinking about putting together a wish list. More news later. Thank you, everyone! --written by Running2Ks

8 sentences for tonight

2005-12-08T19:20:00.000-06:00

The doctors postponed the scope until tomorrow, hoping that the bleeding will have stopped by then and the infection will be under control with the new antibiotics. She is still bleeding, but more slowly since they started the octreotide, a medicine which slows blood flow to the G.I. tract. A few alternative theories have been bandied about, but somehow I know with that paranoid intuition of mine that is, I must say, frequently correct, that she has more varices and that we are going to have to talk about another transplant soon. Even if I'm wrong about that, none of the alternative theories are exactly delightful(recurrence of PTLD, a CMV infection, Crohn's disease). We will not be home for Christmas. There is the most beautiful snow falling on Chicago tonight. Annika said it would be time to go home when it snowed. For the first time, I'm glad her bed does not face a window.

no title for such a crappy-ass night as last night

2005-12-08T10:20:00.000-06:00

This post is going to sound dire. Sorry. But I'm scared. Annika's bleeding increased last night. She went for a tapping of the fluid in her abdomen yesterday (the pocket they tapped was not the source of her infection). And then went for a CT to look for other possible fluid pockets that could be the home for the bacteria. After the CT, she sat on the bedside commode and filled the bucket below with blood. Then she leaned over and vomited even more blood. Repeat scene 1 hour later. After that, she stooled blood every hour or two through the night (continuing this morning). They put her on a rapid transfusion of blood, but her hemoglobin was still dropping alarmingly after two units of blood (and two of plasma to help her body clot off the bleeding) had gone in. Around midnight they switched her to a new combination of I.V. antibiotics, hoping to curb the infection that is making the bleeding worse. Finally, after the third unit of blood, her hemoglobin stabilized and then went up. This morning she is feeling much better, but still bleeding. The new theory is that she had not only varices in her esophagus, but also in her intestine. The Rex shunt, which had been planned, would have taken care of both kinds of varices, but the shunt she got instead may have actually increased the pressure on those lower varices. I have no idea what they are going to do to relieve the pressure on those varices. Add to that that the CT showed fluid accumulating around her heart and that the X-ray showed the areas of collapse in her lung worsening, and you get some shaky hands and gray hairs a-poppin' out everywhere. I know Running2Ks had suggested giving blood for Annika (she has had now 9 transfusions over the past few days). I think that is a wonderful impulse, but would instead encourage you, if you feel like doing something, to simply give blood at your local Red Cross. Obviously, increasing the blood supply for everyone helps out Annika, too. Running2Ks also offered to post for me, and I'm adding her to this blog so that she may do that for me. OK, so I am completely wired on coffee, no sleep, and nervous stomach acid. Thus the possible disjointedness and gaps in the story. But, it bears repeating, Annika is doing well and is stable. She has already informed the doctors that she wants ice cream tomorrow. I don't see that happening, but I think her demand is a good sign that she is still going strong.

blanket-watching

2005-12-07T10:06:00.000-06:00

(again, written yesterday (12-6), but posted a day later. She is currently having the fluid removed from her tummy and a drain placed in IR) I have heard, in the kindest way possible, that perhaps it's all been sounding a bit dire around here. When, in fact, we think that she is actually doing very well. Very sick, yes, but also dealing with it amazingly well. Part of the problem is time. When you only have 5 minutes and your mind is actually still mostly up in a tiny room on a different floor, you tend to stick to the facts, and really only the facts that are most needling. There's no time to put those facts in perspective, or into a context that might allow a better glimpse of the big picture. And then there is also a strange feeling that overcomes me every time I leave Annika's room to go post an update. The nursing staff has been practically chasing me away to go take a walk, take a shower, or eat a cookie. I'm pretty sure that they have all been briefed on the studies that show that parents who refuse to leave their child's hospital room eventually become stark raving lunatics. But it's also when I leave Anni's room that I start to feel the saddest, the most worried, and the least pulled together. It's like this: you know how, as a parent, you can't help but sneak in to your child's room at night to watch them sleep? Eyes closed and movements stilled, you finally have a chance to see all the little details that escape your notice during the rush of the day. You see how her eyelashes form a perfect curve just above the cheeks, and that those lashes are perfectly spaced and curl up in the most perfect decorative fashion, wonderful as the curlicue on top of a soft-serve cone. And then you notice her little seashell ears and that nose so inexpressibly wonderful and, if it weren't for the fact that disturbing her sleep might have seriously negative repercussions affecting your own chance for rest that night, you might crawl in to bed next to her just to match your own breathing to hers, marvelling at the strength moving her chest up and down so evenly, inhaling that scent of sleeping child for a few moments longer. Then, as you are leaving the room, you turn back at the doorway and, suddenly, you don't see her chest moving anymore. It's crazy, but you're gripped by a choking fear that leaves your reasonable mind scoffing. And you know that it's only because you've just been right next to her, staring at her so closely that that movement of breathing seemed so gigantic. At a distance, watching someone breathe is never so momentous. Of course you don't see her breathing from so far away. But you go back, every single time, tensely scanning the blankets, searching for that upward movement that proves life is still as it should be. So right now I am in something like a state of constant blanket-watching. Surely I am staring at the monitors that display her vital signs way more than is healthy. And if I match my breathing to her fevered pant right now, I hyperventilate. But still there is so much to marvel at, and I see that she is still strong, despite whatever it is that is going wrong. Annika was moved out of the PICU and back to the regular transplant floor on Sunday evening, sooner than anyone had expected. Tonight, Tuesday, we are back in the PICU with a suspected bacterial infection. The source of her bleeding is still unknown, as her shunt is definitely still working. Tomorrow she will go to interventional radiology and they will drain the fluid in her belly that has been making breathing so difficult for her. It's possible that the fluid will simply reaccumulate after this procedure, but the doctors are suspecting that the infection is stemming from that fluid.

shit shit shit

2005-12-06T11:06:00.000-06:00

It's our new theme around here! Yes, Annika is bleeding again. Yes, that's what that painful 8-hour surgery last Wednesday was supposed to fix. She had an ultrasound this morning to see if her shunt had clotted or narrowed or otherwise was no longer working as well. I still haven't heard the results, but I suppose I should by this afternoon sometime. Meanwhile, they are beginning to put her on blood products to help her clot more, so that her bleed does not become dangerous. On the other hand, if they get her to clot too much, she could clot off her brand, spanking new shunt. Jörg needed to go back home to teach his classes this week (an income and insurance are required to keep up all this fancy medical footwork going). But this means that I don't have much time to slip down here to the hospital computer lab to post. Obviously, I don't want to leave her alone when so much is uncertain and a bit scary.

a donkey on the head

2005-12-04T08:07:00.000-06:00

It turns out that the number of nights I can go without sleep without experiencing total emotional meltdown is 3. If I had written my last update on Friday afternoon instead of that evening, it would have been all upbeat, I promise you. Annika was really looking great during the day. Then the afternoon came and she began hurting and her hemoglobin plummeted and I was worried about bleeding and having to send her back to the O.R. I think the fall was harder because she had looked so good during the day. After such a great day, the IV pole next to her bed had filled rapidly as the doctors kept adding to her regimen. Soon her cluster of IV pumps was reminding me unhappily of her post-transplant times, with their long, hard recovery period. I was starting to think she would have to spend another week in the PICU. When a code was called again that evening in the unit, I had a few tears for the child I didn't know whose hold on life had suddenly become so precarious. That night the poor nurse who was given care of Annika had to deal not only with Annika and her complicated schedule of 50 gazillion IV med's, but also a mom who was clearly a donkey on the head, as Annika would say. I got so upset with the nurse that I refused to abandon the lawn-chair-like seating by her bed for the fluffy-down-mattress-like-in-comparison fold-out chair across the room. Neither Annika nor I got much rest at all that night. Jörg was supposed to leave for home Saturday afternoon, but once he recognized how very donkey on the head I was, he decided to stay for another day. I slept 2 hours that morning, and another 2 that afternoon in the room, my dreams mixing weirdly with the conversations of the doctors and nurses stopping by to check on Annika. Jörg, meanwhile, kept watch on Annika, also upset with how her condition seemed to have deteriorated from the day before. He had to wear a mask the whole time he sat with her, as he had developed a sore throat the night before. We were pretty certain that it was just the dry air and stress, but didn't want to chance passing on a cold to her. That night I was determined she would get some good rest. At 9 I turned on her current favorite go-to-sleep song, Be Still My Soul. This was a song that I put on the photo slideshow memorial I made for my Aunt Pat's family, and Annika fell in love with it on first listen. I can't say that the lyrics are my favorite for listening to in the PICU, not being much in the mood for reconciling loss right now, but it put Annika in the most blissful state of relaxation. New Age music, morphine, and the humidifier on her nasal cannula bubbling zen-like behind her bed, she drifted off to sleep. Through the night, she lost more tubes. In typical Annika fashion, none of them were removed on doctor's orders. At 10:30, I awoke to see lifting her urine catheter in the air, the large tube connected to the catch bag was caught between her toes. I untangled the tube from her toes, but a few minutes later the nurse and I realized that Anni had broken one of the connections on the catheter. "Wow. I've never seen that happen before," commented our nurse, a long-time PICU veteran. Thus was the urine catheter removed. Then around 4a.m., Annika pulled her nasal cannula off her face, apparently still asleep. Amazingly, her oxygen levels stayed around 90%, so the nurse just left it off. So I'm hoping for a good day today. Jörg is leaving as soon as I return from doing some laundry (it's in the dryer now). And I hope we'll be out of the PICU and back to the regular floor perhaps tomorrow.

sorry, nothing flowery tonight

2005-12-02T18:52:00.000-06:00

Annika's feeling bad right now, and wants me there with her, so I'll keep just to the bare details. She's been very uncomfortable for the past 24 hours with so much fluid in her abdomen. In fact, the top portion of her left lung is collapsed from being pushed on so much. Normally, the ventilator would provide support to keep the lung inflated, but she's been on her own to keep the lung inflated. Which she's been doing extraordinarily well, but it's clear that she is getting really tired of the effort. She's also been having continuous fevers and is now on I.V. antibiotics. She's getting more blood right now, because her hemoglobin took a pretty good fall today. We're hoping that it's not more bleeding. It could be simply "fluid rearrangement" (doctor's description that I don't completely understand, but we were too worried and glad to hear an alternate explanation to the dreaded bleeding to really question it). Still, she had a pretty good day all in all.

booby-trap, medical edition

2005-12-01T19:17:00.000-06:00

What a day. We're all exhausted just watching how hard Annika has to work right now. She's started spiking fevers, and her belly has filled with fluid, making breathing even more laborious. Still, she is mostly resting, having earned herself a morphine drip with a rumble pack (a little button she can push for an extra hit). We have been concerned over how long her heart rate has remained at the dizzyingly high rate of 160. One of the liver fellows (somewhere between a resident and an attending on the doctor hierarchy) said that it wasn't so terribly high, "like a brisk walk," were his exact words. He must be one of those guys that does the facial-contorting, rubber-legged freaky exercise walk in the middle of a blizzard because I'm pretty sure Annika's heart rate never goes that high on our walks to the park. More convincing is the reaction of the surgery fellow, who is shocked at how well she is doing off the vent. He told us that it was a really hard, long, tough surgery and that she lost an awful lot of blood. So he's not surprised that her heart rate has stayed so high. That's a lot of trauma for her body to deal with. Our favorite nurse, Beata, saw Dr. Superina on his way out last night. She grabbed him and said that she had to know, just quickly, how Annika's surgery had gone. "That Annika," he said, "she's just complicated." I'm pretty sure that he was not referring to her intoxicating combination of devilry and wit, or her maddening forays between snuggly love and prickly independence, or the way she insists that people sit in a symmetrical formation on buses and around tables. To us he described operating on Annika as like "working in a great big booby-trap." (This, by the way, might also be an apt description of parenting our wondrous child, although a little slip on our part would be admittedly less devastating.)Annika's abdomen has been opened and rearranged and rebuilt so many times, it's no wonder the usual maps don't really describe the lay of the land. First there was her Kasai, in which a loop of bowel was attached to her liver in an effort to save her original liver. Then, her first transplant, in which her portal vein was completely rebuilt from vessels donated by her liver donor. Then, there was her second transplant, in which the first transplanted liver was replaced, but the transplanted and rebuilt portal vein was left intact. And then her hepatic artery was rebuilt with vessels from the leg of her living donor, Cliff. For an extra dash of excitement, Dr. Superina told us that some rogue lymph nodes from her bout with PTLD were also getting in the way. Finally, to really mix it up, Dr. Superina found a pool of "mystery fluid" in a completely unexpected place. Whew. Boring medical details aside, Annika decided to use one of her few awake times to let her daddy know, forcefully, that the squirrels in Lincoln Park should not be fed. And to be sure the nurse knew that, although the anesthesiologists were to be thanked for not putting an I.V. in her neck, the one they put in her wrist was actually supposed to go in her lucky vein, the antecubital. Hmmmmpph. I suppose if you want something done right, you have to do it yourself.

you can sedate the girl

2005-12-01T12:30:00.000-06:00

but you can't keep her down. The plan for last night was to keep her intubated (with the ventilator doing the breathing for her) through the night, and completely sedated so she could rest up after all the hard work of making it through a grueling surgery. After the ultrasound in the morning to assure that the shunt was still working and there was no internal bleeding or any other unforeseen complication, they planned on beginning to wean her off the ventilator. After the nurse had her all settled into her PICU room, we went in to see her. She looked great. When I heard she had received 3 units of blood, I figured she would be pretty swollen, given that they also usually give quite a bit of fluid during such a long surgery, as well. Instead, her belly looked nice and flat, and her face was not all stretched out and shiny, as it had been after her two transplants. She just looked like she was sleeping. Sleeping with an ungodly number of tubes and pumps and machines surrounding her, but sleeping nonetheless. The respiratory therapist checking in on her assured us that she was "totally riding the vent," and I fought the urge to reply, "Dude!" We let out a few relieved laughs, and prepared ourselves for a nice, quiet night. When my friend, Jennifer, called to check up on Annika, we indulged in a little non-medical chit-chat, as well. When Anni's nurse left the room, I told Jennifer that it was too bad that Annika wasn't awake, because her nurse was a dead ringer for Barbie, as Princess Annika. I figured Annika would be delighted, and perhaps a tad star-struck. The anesthesiologist assured us, though, that Anni had enough drugs on board to keep her snowed all night. And the nurse had just given her a little extra morphine and versed. Just in case. Through the magical mother-daughter communication connection that transcends anesthesia, though, Annika apparently heard me. So when, a few minutes later, Barbie as Princess Annika bent over her to suction her breathing tube while I stroked Anni's hair, her blue, blue eyes flew open. Almost immediately, she arched her back and swung out with her arm. Just like that, she swiped the breathing tube out of her mouth. That's when Barbie swore. She reached over and hit the "code" button, which sent off a swooping siren throughout the unit. She looked over at me through the curtain of her long, blonde hair and said, "In just a few seconds, there are going to be a lot of people running into this room." I didn't need a second hint to get the hell out of the way. I moved back to the corner of the room. The last thing I saw before Anni's bed was surrounded by people in scrubs was her oxygen monitor flashing a desperate red as the number slid unbelievably fast. I heard someone by her bedside shout, "Grab a crash cart!" That's when Mommy swore. About 10 years later, or perhaps only 10 minutes, the sea of scrubs parted and they told me that I could come to the foot of the bed to talk to her and try to calm her down. Thrashing, she still clutched the breathing tube in her hand, waving it above her head like it was a snake she was wrestling out in the deepest Amazon. Who knows? Maybe it was. She certainly had enough drugs on board to make that a plausible storyline in her little head. I did see, though, that her oxygen numbers were back up in the high '80s, which meant she was successfully breathing on her own, even if the sound of her lungs was like the sound of wrapping paper being shoved into a garbage bag after a particularly generous Christmas. I spent the next 3 hours sitting by her bed, holding her hand and watching the delicate neck skin under her ear push up and down as her heart beat frantically. Her heart rate all night was 160, as opposed to her usual resting heart rate of 70. But her breaths became easier and her oxygen levels rose steadily. All good news. But now we were left with the dilemma of having to be careful not to oversedate her, or risk having her breathing stop. So instead of the restful evening she was supposed to have, she awoke every 10 minutes and peppered me with questions in her slurred voice. She waited just long enough to hear the answers, and then slipped back to sleep. Jörg is downstairs now, and I'm up here in the computer room, out of her PICU room for the first time in 17 hours. The good thing about not sleeping all night, though, is that you don't have to deal with bedhead the next day. All the excitement notwithstanding, she appears to be doing extremely well.

done

2005-11-30T19:05:00.000-06:00

The most important news first: Annika is out of surgery and doing fine in the PICU. It was over 8 hours from the time they took her out of my arms until we spied her being wheeled out of the O.R. That's nearly as long as her first transplant, but nowhere close to the 12-hour marathon of her second. Unfortunately, the Rex Shunt did not work for her. The surgeon came out after 4 hours and told us that every time they tried to move the bowel to get to her portal vein in her liver, she started bleeding like crazy. The good news is that they were able to do a different kind of shunt, the spleno-renal shunt (also called a Warren shunt). I don't have time right now to google up some articles to link to, but the main difference is that the Rex Shunt would have restored blood flow (currently blocked by the clot) to her liver. The spleno-renal shunt instead redirects the blocked blood flow down toward her kidneys. This has the effect of instantly reducing the pressure that has been causing her to bleed from her esophagus. But it doesn't restore blood flow to the liver (and remember that the portal vein supplies some 80% of the liver's blood supply). Usually the spleno-renal shunt is done as a stop-gap measure to deal with bleeding varices for a patient who is waiting for a liver transplant. Obviously, we don't want to be waiting for a liver transplant (again). However, the surgeon said that she has developed her own new blood vessels which are sending blood to her liver, and her liver looks really good. So we're hopeful that this shunt might do the trick for her, even though it wasn't the shunt the doctors hoped to perform. Dr. Superina (her surgeon) sounded very upbeat, and that really does mean a lot to us. There will be a lot going on in the next few days, but right now I'm looking forward to just seeing her beautiful eyes open back up again. Perhaps tomorrow, if all goes well.