Day -7: Holding steady

Sam's now had two doses of Fludarabine (chemo) and seems no worse for wear--no mouth sores or nausea or diarrhea or other standard chemo-related unpleasantness. The sailing has not been entirely smooth, however.

He's had high blood pressure due to steroids and all the fluids he's been getting, but thanks to a combination of things that seems to be improving*. Sam occasionally gets a fever, but it's nearly always low-grade and short-lived. More important: none of the blood cultures they run when he's febrile has shown any sign of infection.

Sam's put on more than a pound in the last week, due mostly to fluid retention. He's kinda puffy and bloated-looking these days, but the staff don't seem concerned by this except as it relates to the hypertension.

Bath time? Awful. Cuddly after-bath towel time? Not so bad. 

In short, he is holding steady. Whenever the water's been a little rough, the staff have prescribed or tweaked something to get us back to calmer waters. (OK, enough with the damned boating metaphor.)

The only other real struggle Sam's had is with diaper rash, and it's been painful for him and anxiety-producing for us: we don't want him any more uncomfortable in the coming days and weeks than necessary, and we definitely don't want him extra vulnerable to infection.

Fortunately, a change in Sam's butt-care regimen seems to be doing the trick. We used to rub a dab of standard-issue zinc oxide-based butt paste on his rear to prevent diaper rash. Now we slather on specially medicated, house-made paste (his ass looks like a newly frosted cupcake when we're done); place sterile, non-stick Telfa pads on each gooey cheek so it doesn't stick to the diaper and have to be peeled off during the next change; adhere 1/3 of a sanitary napkin to the inside of the diaper to increase absorbency; and, every 2-3 days, apply a liquid skin protectant** after his bath. The extra effort seems to be working, and that's great, even if the diaper change protocol now warrants its own instruction manual.

In other news, we've moved into a new room. We are now completely within the BMT Unit, behind two sets of secured double doors. The old room was squeezed in between the two sets of double doors--it was loud and echo-y. Even better: the room has a fridge and a recliner/rocker that's waaaay more comfortable than the ones we had during Sam's first hospitalization this summer. The "little" things make a big difference around here.

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* Average recent BP had been 125/70--not terrible, but neither normal nor desirable. In the last day or so we've seen a few hit the 100/65 range, but there's lots of variation, and it's complicated by the fact that it's evidently damned near impossible to get consistently reliable readings on an infant.

** Funny thing about this stuff: it goes on sticky and stays that way until it air dries. Which, as you might imagine, could lead to some interesting scenarios if you've applied it to an infant's spread-open butt cheeks and fail to let it fully dry...