Tuesday, December 9, 2008

Unpredictable, indeed

I'm going to make this quick because I'm really quite tired but I have to share all of what's going on.

Yesterday I had off from school because, I believe, it was a Muslim holiday. We have a fair representation of Muslim students, so it makes sense. We booked The Boy's pediatrician appointment ("well" visit...sort of) for that day, and that was our first stop.

We didn't wait long, but he said that next time, we won't be waiting at all. Just call, and we'll go directly into a room and that will be that. He said that The Boy looked good. He had lost a bit of weight but had still grown an inch. He also gained a bit of head circumference. Normally, they'd do a weight check on kids his age who lose weight, but he had just had a stomach virus, and chemo, so what do we expect? He also didn't seem too concerned about his walking and talking. He is almost walking, so that's good enough, and he'll make the switch when he's ready. He does say a few things, like "Mom" and "ap" for apple or applesauce, and a few times he's said "juice." After 18 months, we are to encourage him to say more things and point a little less, but right now he's doing what he's supposed to do, even in the face of what he has to experience.

After this was a visit to the treatment center. No matter what, I need to learn that he doesn't ever just go in for a "visit" there. I think that maybe once since we started with this has he ever just gone in for counts. His chemo treatments with just Vincristine were short visits, but so very rarely has he had just a finger stick, wait around for numbers, and out the door.

Yesterday was no different. Counts were crappy. Hemoglobin was very low, so they brought in some blood. That took quite awhile, as it usually does take awhile for blood to arrive and it is almost 3 hours of actual transfusion.

Usually, when a patient receives a blood transfusion, they get Benadryl and Tylenol, to stave off any possible effects from the whole thing. Also, more central to the story, a person getting a transfusion usually feels like a million bucks by the end of it.

But, alas, it was not to be.

The Boy was sleepy all day, as was to be expected with low hemoglobin. But he just didn't perk up, at all, after getting the new blood. In fact, his temperature, which was fine in the morning and only a little bit high in the afternoon, was even more elevated. And past the magic number. An automatic admission ticket.

The Boy's fever briefly visited 103 (although Musical Daddy is certain that it wasn't that high because he's usually pretty good at figuring out what The Boy's temperature is, just by touch). After that, though, it dropped down to normal and has stayed there ever since, B"H. His counts are getting better but still are not high enough for discharge.

I stayed last night; Musical Daddy is doing the next two nights. We don't know when he's getting out. Well, we do, but as per usual, discharge comes as a result of meeting criteria, not as a date or time in anyone's planner. So when his ANC is over 500, he's good to go. He has been on Neupogen for over a week. Let's see it work its magic.


Musical Daddy said...

No way was that fever at 103. I haven't been off on his temperature by more than .2 or .3, like, ever - no way was I off by three whole degrees. That thermometer must have been screwy.

nancy said...

Well that just blows. Someday these visits will be in/out. Unfortunately, just not yet.

Here's to a "quick" 3 days in!