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