I won't take time to do a long post since tomorrow morning is Annika's train trip with her preschool class. Of course I'm going along, and Annika's super-nice preschool teacher is bringing a fold-up wheelchair for Annika to use for the long walk from the train station to the park. She's been looking forward to this trip for a while, although I haven't been talking it up, just in case she had to be in Chicago instead. So I should get off to bed and get a sufficient amount of sleep to avoid falling off a train platform somewhere.
Annika's lab results last week were just awful. I plugged her lab numbers into the PELD (Pediatric End-Stage Liver Disease) calculator
over at the UNOS (United Network for Organ Sharing)
website. The PELD score determines where kids under the age of 12 are on the waiting list, with the sickest kids having priority (the higher your PELD score, the higher your estimated risk of mortality at 3 months). The average PELD score at time of transplant is about 18. A PELD score higher than 30 usually means that your liver is pretty well FUBAR (since it's all about acronyms in this paragraph). Annika's PELD was 23.
I did all sorts of googling to try to figure what, exactly, this meant for her. Mainly I was trying to find out the big answer: if the PELD score is based on the estimate of mortality at 3 months, then what's the estimate associated with a score of 23? Especially given that her surgeon still wants 6 more months before he feels she has a reasonable chance of surviving another transplant?
I didn't find that answer, exactly, but that phrase, "3-month risk of mortality" kept popping up on every document I found, and it was just driving me batty. She needs 6 months, and I don't know how much of a stretch that is going to be. I do know that 23 is not like a panic PELD score, but (I've written and erased the ending to this sentence 3 times now, so I'll just go with...) but I don't like the trend and I don't like this situation.
The good news is that we repeated her labs this week, after she'd been on her new antibiotic regimen for 5 days and they looked better. Not champagne-popping better, but enough to get me to lay off Google for a bit. Also in good news is that it turns out that Annika is (almost) in the most resilient age group, according to the numbers. Of all age groups, 6-10 year old children look to have the lowest mortality rate associated with transplant.
I'm throwing this up on this blog, because I figure this is the place where the squicky medical details live. I'm still trying to figure out how to work the new blog
. There are some high-powered bloggers over there, and I'm working out how, exactly, I fit in.