all things

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

6 long months

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

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

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

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

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

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

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.