"plus ça change, plus c'est la même chose" - Jean-Baptiste Alphonse Karr
Mucositis is a real bummer and Elise is suffering through it. I spent the night at the apartment last night, but Becky said Elise was up most of the night either with throat pain or diarrhea. We're still counting on the palifermin to reduce the severity and intensity she would have normally experienced if she didn't have that med, but even then the reduced symptoms are pretty bad.
The pain was bad enough that she couldn't eat, and worse, taking her oral meds was a real struggle. So they have transitioned her to IV meds where possible. They've also given her a "patient controlled analgesic" or "PCA". It's essentially a computer controlled morphine dispenser. Elise can press a button that will meter out a dose of pain medication. She can press it all she wants but there's a maximum dose that will be dispensed over a period of time. They say this is the best because they record how much she presses and so they can better judge her level of pain over time. It also gives her some amount of control in a situation where she has little control. The added plus is we don't have to wait 45 minutes from the onset of pain until the Dr approves the dose and the pharmacy dispenses and delivers it. All around it should be better.
Her fever seems to be on a roller coaster, probably due to the Tylenol they are giving her. They haven't cultured out anything in the samples they took yesterday (I guess that's good) so she's still on some broad spectrum IV antibiotics.
Her red blood cell count fell below the protocol targets so she got a bag of red cells. The PA said her platlet count looks like it will drop below the protocol targets by tomorrow, so she'll probably get a bag of platlets in the morning.
Elise said she found some hair falling out today, so that might be just around the corner. But Becky washed her hair this afternoon and didn't notice any hair loss. It would be real unusual if she didn't lose her hair, so we're all anticipating that to hit sometime soon.
It's back to the weekend here, so the hospital has largely cleared out for the next couple days. The weekend residents came by and checked in, but I'm hoping that we won't be seeing them too often. I'm also hoping that by then end of the weekend the mucositis will be easing off or maybe even gone. More importantly, I'm hoping this first fever will have run its course by then as well.
It's hard to believe its been a week since the stem cell infusion. By this time next week we'll have the first indications whether the donors cells are beginning to engraft in Elise's marrow. Now that's something to look forward to.
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