C is for Cookie (D+9)

"My mother's mother is a very tough cookie. She buried three husbands. Two of them were just napping." - Rita Rudner

I don't have a new picture of Elise for this post, so I pulled one out that's about a month old. I can't get pictures of her because she's spending most of her day and night in the bathroom due to diarrhea from the mucositis she's got as a result of the transplant conditioning regimen. It's fairly common, but still tough to watch. I can only try to imagine how Elise feels.

She is in pain from the mucositis, but I think the worst part is the lack of sleep. Getting up every 30 minutes, its tough to wedge in any sleep. But she has become an expert in unplugging her monitors (and silencing the annoying beeping when the alarms go off). I don't think Elise's has more than a few hours in the past two nights. She seems sleepy but not like you'd expect. Could be the meds or something else.

Becky and I have been trading off so we've been able to catch up on the Z's every other night. Last night it was my turn to stay at the apartment and I slept 8 hours straight. And I mean straight - no midnight pee, no wake up to look at the clock, nothing. I can't remember the last time I didn't that. I can't imagine what single caregivers do.

She got an infusion of platlets yesterday as expected. The timing was good because she's started getting slight nosebleeds, probably from the dry air in the hospital (she gets these at home in the winter). The problem is if you have no platlets then the most minor nosebleed can't stop. But with the added platlets the nosebleeds are annoying but workable.

They've been adjusting her pain meds and decided today to give her a baseline does and then allow her to bump it up if necessary via the PCA. This seems to be working better as her pain level has stayed down around "4" vs the "7" or "8" it had consistently been the past few days. I guess the theory is that giving her a base makes it so she doesn't have to "chase" the pain. They said they started her at a low base dose and will adjust from there. She seems reasonably alert even with the pain med.

Her fever continues to cycle up and down. She got pretty hot earlier today, but it responded to tylenol pretty well. They still haven't cultured anything out so they've still got her on the broad spectrum IV antibiotics.

She showed me that she's beginning to lose her hair. That's new and exciting for her in a strange sort of way. I guess you take what you can get. I think she's looking forward to sporting the hats we got her before we left.

I'm hoping the mucositis passes sooner rather than later, but I don't see any signs of it diminishing yet. I know I should be more worried about the fever, but that's not what's causing Elise the most grief, and being the parent I just want to see my daughter comfortable.

She's been a real champ through it all. The nurses have all commented on how well she's taking it. I guess not everyone responds the way she has. She is one tough cookie.