Thursday, December 22, 2005

tweaking the factor

Note: the treatment for hemophilia is an intravenous shot of clotting protein, or factor, into the blood. It needs to be done, typically, two or three times a week for prophylactic purposes (i.e., preventative care - not safe sex, you feelthy, feelthy person).

We've been dancing a delicate dance here for the past while, trying to balance the amount of factor our older son needs with the number of pokes that his veins can take. His body has a tough time accepting the factor as a friendly, if foreign substance, so he has a shorter life-span to each dose than most kids with hemophilia. So it's a dose every 48 hours, which means finding a vein every 48 hours, which any junkie could do - but not so easy on a 4 year old. So, in case you are wondering, I - yes, I - have the Best Kid in the World. Now, I'm willing to agree that your kids are really rather nice, but when you get right down to it, mine holds out his arms/hands/legs for nurses and even parents trying to find a vein, sits still even as we fail and try a second, third time, and hugs us when we are done. You're the best, he tells us, and thanks us. Does he understand the risks he runs withut the factor? Nope. He just trusts us grown-ups to do this unpleasant thing, and then he takes the time to express his appreciation. (Note: I did not teach him to do this. This is all the kid.) Damn, but on a day when you've really sweated over the poke, when you've seen veins blow or just disappear under the needle, being thanked by the kid will, well, it'll give you perspective. Because it's not about your frustration and guilt at not being able to find the vein quickly and easily - it's about the little boy sitting patiently and occasionally hollering advice. What a kid.

[Editor's note: no, I am not playing the gimp card here. I do play it from time to time, but not in this blog. And yes, the kid can be typically horrible from time to time, and no, I haven't yet found the 'off' switch. In fact, I'm fairly certain that most kids can be taught to sit still for uncomfortable procedures, once they become familiar with them. But that's not why he's the BKITW - he earns that for the hug and the compliment he hands out afterwards.

If only his veins had his resilience, but they don't. Poke 'em too often and they bruise, becoming fragile and unusable for days, even weeks. So you could indeed hit the vein at the magic, perfect angle that each vein has, but still not get the factor into him - and have caused a minor bleed into the bargain. Whee.

This week, the best nurse I know had to poke him four times to give him his dose. Afterwards, the kid happily slurped up pudding (food heals what ails ya, dontcha know) while I called the hematology team. So now we're tweaking the regimen, and shifting to three pokes a week, instead of every 48 hours. We'll have two different dosage sizes to go along with it, and we'll test the dickens out of the kid, to be sure that he'll be protected under this new regimen. Of course, my partner reminds me, the last time we reduced the number of doses he got, the kiddle had these bleeds in his knee...

And so we dance, giving more factor in fewer doses, less factor in more doses, back and forth until we're finally in step with the boy himself.

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