Wednesday, July 30, 2008

oh, why can't he just pee already?!

so, we're at the tail end of our little vacation. mom and i took the kids to the ROM yesterday, which was awesome. and because asher has a disability (or several), i could get in for free because i'm his "attendant." delightful! i love doing expensive things for cheap! :)

anyway, the real reason we're in toronto today is because asher had immunology clinic this afternoon. it was a follow-up appointment from his appointment in january. i figured they'd tell us that there's nothing wrong with his immune system, he just spends too much time in hospitals, we don't need to see him again so take him home now before he gets sick again. haha, if only!

turns out, some of his t-cells are low. for those who like the technical information, his CD4 count is 718, and should be at least 1000 (the "control" they used had over 2000). and his CD8 count is at 234, and it should be at 400. this can pose some problems, but the fact is that while his t-cells are pretty low, the ones he has work well. so it's a concern, but he doesn't need to be isolated. just some hand sanitizer and such, but otherwise, treat him like a normal, healthy kid.

they are also still considering DiGeorge Syndrome as a possibility. of course, not the classic "chromosome 22q11 deletion" kind of digeorge, but some other variety. apparently, there are several different strains of the syndrome, and since asher lacks some of the more classic signs (eg, facial deformities), they're looking into a sneakier strain. because of course asher can't have the more common, classic variation of the syndrome! that just wouldn't be asher-ish, now, would it? sheesh!

i know most of you don't know anything about DiGeorge Syndrome, so i will try to find a good link about it and post it on the side bar so you can learn more. but that will have to wait till at least tonight, but probably sometime tomorrow at the earliest. in the meantime, here's a list of the usual issues that comprise DiGeorge:
  1. severe heart defects, particularly involving underdevelopment
  2. kidney issues, especially misshapen or underdeveloped kidneys
  3. immunocompromise, especially t-cell deficiencies
  4. low calcium levels
  5. feeding issues
  6. facial deformities

any of those sound familiar? yeah, that's why they're stuck on this digeorge query. the problem is, though, that the test immunology does for the syndrome, namely looking for a chromosome deletion (chromosome 22q11, for those who like to know) came back negative (translation: asher has that particular chromosome). there are other tests that could be done, but not by immunology. for further digeorge testing, he would require a genetics consult. so that is coming. beyond that, we have another immunology appointment in october, when they will do more bloodwork to assess his t-cell situation.

ok, i just remembered that some of you may not know what t-cells are, either. basically, they're white blood cells that fight off disease, particularly bacterial disease. which might explain why asher is so prone to weird bugs in weird places. remember that the t-cells he has work well, but still, they're low.

ok, i know i'm forgetting stuff. what else is there? man, i wish i had my notes in front of me. this blog post was kind of an impulse thing, something to do to pass the time. arg. ok, um, i'm supposed to talk to our nephrologist next month about a referal to urology regarding his frequent UTIs. we're also supposed to have nephro arrange for another VCUG, which delightful. ugh. yet another test where i have to pin asher down while he screams and fights because they're putting tubes in unholy places. oh gosh, how soon can we get in for that? i can't wait. let's see, anything else? i don't think so. i think that's it. oh, the title of this post. i should probably explain. immunology does a lot of bloodwork. and apparently, they also wanted a urine sample today. so, we're sitting here in the hospital, waiting for him to pee. you wouldn't think that would be a problem for a kid on diuretics, but you'd be wrong my friend! almost 2 hours we've been waiting! but now he has peed, so we're off to phlebotomy so they can deal with that. ok, talk to you later! :)

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