One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Saturday, February 25, 2006

wonderfully awful, awfully wonderful

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.
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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.)

Tuesday, February 21, 2006

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

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.)
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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.
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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?

Tuesday, February 14, 2006

who's your sunshine?

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!
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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,christmas, good for months of fun 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 the Minnesota liver friends are pulling for her to gain back some pounds 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.

Monday, February 13, 2006

oops, rambling

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.
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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.

Saturday, February 11, 2006

confession

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

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.* Groovy Girls new rockin' hospital fashion Annika, 2-11-06 Annika with snugglies 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.
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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.

Friday, February 10, 2006

a rather boring account of our current workings

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.

Thursday, February 09, 2006

we are so screwed

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.
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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.
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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!
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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.

Wednesday, February 08, 2006

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. the royal cape (Christmas) blood draw (playing blood draw) getting jiggy with specimen tubes (ah, the joy of specimen tubes) missing tooth (missing tooth) morning hair (The Hair! The Hair! )

hard words to live up to

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.

Saturday, February 04, 2006

PICU blues

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.

Friday, February 03, 2006

fluoride

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?

Wednesday, February 01, 2006

insert expletive here

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).