lots of blinking

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

Visit

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

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

acclimating

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

the forecast: more of the same

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

dancing on the edge of a cliff

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

her next game was called "Princess Robot"

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

exploding heads

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

d'oh!

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

dangerous things

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