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.

Tuesday, February 15, 2005

Annika taking charge: for good and bad

We had to have another blood draw this week, as the last labs showed that Annika's main immunosuppressant had dropped a bit too low. At the same time, her liver numbers made a sizeable jump (up about 100 from last time). I won't blather on about lab values, but suffice it to say that in most people this would be a signal of some serious goings-on. At this point, it has happened too frequently with Annika to set off any alarms, so we got off with just rechecking labs this week. Annika has been carrying on as her usual self, meaning that she is still engaging in the grand experiment of testing the limits around here, and once the limits have been made clear she is back to being her lovely self again. Case in point: When it came time to us to leave for the lab (the blood draw has to be timed at 12 hours after her last dose of prograf), she began to throw a fit. Well, not really a fit as in the fit she threw during the recent horrendous trip to Chicago, but running away and crossing her arms on her chest petulantly while declaring that no way was she going to get a blood draw kind of fit. I have a new counting technique that I've been using with her, and before I finally convinced her that it was time to cooperate she had lost a) the car-music-choosing privilege and b) the pushing-the-garage-door-opener-button-once-she-is-safely-strapped-in-the-car-seat privilege (and never-ever any other time, lest you were worried about garage door mishaps), but not c) the help-mommy-carry-the-recycling-to-the-giant-recycling-bins-on-the-way-to-the-hospital privilege or d) the splash-in-puddles-in-hospital-parking-lot privilege. Once we were actually en-route, Annika was remarkably cheerful. She had a great time chatting with the women in admitting, who all know her by name and don't mind listening to her blow by blow account of her preschool valentine's day party. (Unable to resist the temptation to explain all detail no matter how boringly banal, where does she get that from?) She was still all sweetness and light when we got to the lab. Although there was only one other woman waiting, we ended up having to wait some time. Since that woman seemed to be actually watching CNN, I turned down Annika's request to change the channel to something featuring animated characters and a kickin' soundtrack. And we waited...Are you sensing that there is about to be some explosion of gigantic proportions? Well, THERE ISN'T! I found a little mini-pot of hot pink playdough in my bag, although I can't for the life of me remember how it got there. When I say mini-pot, I really mean microscopic, so I wasn't quite sure what she was going to be able to make of it. Not to worry. She took out a glob, flattened it a bit, and then stuck it on her thumb. Having done the same for the other thumb, the two thumbs began a friendly conversation, mainly consisting of falling all over each other with compliments on how stunning their "wiggity-wigs" were. By this time, the woman was clearly no longer watching CNN, but instead was caught up in the drama of the two thumbs and their fabulous wiggity-wigs. Annika, noticing her attention and really being a ham at heart, decided to up the ante by continuing her little thumb show while simultaneously twirling around and around. That girl must have bionic inner-ears--she could probably rub her tummy, pat her head, sing the alphabet song backwards, and twirl around without ever losing her balance. So when the lab tech began questioning me about Annika's labs, and then for some reason asked me where Annika's transplant had been done, I think the woman about fell out of her chair. I guess it can be a bit surprising to see Annika looking the picture of radiant health while the lab tech reads off an impressive list of tests and the words "liver" and "transplant" are being bandied about. I'm pretty sure that that scene was in violation of pretty much every medical privacy act, but on the other hand I view it as a sort of indirect organ donor activism to make sure people see what transplants can do for kids like Annika. Anyway, it turns out that the big wait was for the lab tech to call in reinforcements, which I guess is standard procedure for blood draws on kids (to help hold them still). That's one of the problems with going in at an unusual time for her draw--this new tech had no idea that Annika would, of course, be the best patient she had all day, and no brute force would be necessary. I am really pleased to see signs that Annika is beginning to take responsibility for her own care, since she is going to have quite a job to learn as she gets older. When the tech began to use the latex tourniquet, Annika stopped her and said, "No, that one gives me a rash. I need the blue one." What's insane is that the tech wasn't even listening to her, and kept coming at her with the latex tourniquet. So Anni just yelled "Stop!" At which point the tech gave me a puzzled look, like WTF? I'm still not sure why exactly she was so puzzled--Annika was perfectly clear in explaining the situation. But I was forced to add, "She's got a sensitivity to latex." Silly that kids are sometimes just not listened to when it comes to taking care of themselves. So some of the results are back already and again her liver enzymes have jumped by another 100 points each. But since her bilirubin is stable, we're still cool around here.

2 Comments:

Blogger angela marie said...

I found you because of Deb. She is a friend of mine and told me tha she is going to be writing on your 'Postcards From Holland' blog. I am liking your writing and will be back!
I'm glad that the increase in the meds is helping with your daughter's liver functions. Oh, and I'm a med tech...shame on the one who wouldn't listen. First, HIPAA violations and then latex? Well! :)

2/24/2005 8:05 AM  
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10/30/2009 12:14 PM  

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