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:
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.
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
inspired or the raffles
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).