I’m pretty sure I got a glimpse last night of the sleep torture techniques they used in Guantanamo Bay. Just as I felt my brain shutting down into the delightful state of unconsciousness I would be yanked back up into the confusion of how there could be possibly yet one more issue to attend to. Vitals are at 8pm, 12am and 4am. The IV pump must be flushed and Allistaire’s double-lumen Hickman catheter checked every two hours. She get’s antinausea medicine every four hours and a round of antibiotics once in the night – both through her IV, however, once these are done going through the IV pump the IV will alarm to inform the nurse that it is finished. If not attended to in a few minutes the volume goes up on the alarm which essentially feels like someone’s yelling in your face. At home one diaper can last 12 hours – not so in the world of IV fluids constantly being pumped through your body and nurses who check it somewhere from every 2 to 4 hours. And then of course, there is the little lady herself. Let’s just say the miss-cranky-pants of a few days ago has disappeared and Allistaire has regained her giddiness. From about 2:30 – 4:15 last night Allistaire was up, playing with the label on her arm bracelet she is required to wear. She tears it off then gets upset that it’s off. I put if back on, she takes it back off. She was having a hard time falling to sleep and because she’s been eating so little I thought she might be hungry so I offer her the sippy cup of milk which she seems to be enjoying. I go back to sleep. Drifting away and then what? Allistaire is running the sippy cup back and forth across the metal slats of the crib like she’s a prison inmate. I go to her side and inform her as sternly as I can that it’s time for nigh-nigh. She giggles and wants to play – who can resist? I finally decide she’s just going to have to cry a little bit but nurses are sweet and well-trained and come running to see what’s wrong. I know, I’m torturing you just telling you all these details. Needless to say, we’re both tired but we’re working on better communicating our needs and streamlining what needs to get done during the night. We definitely appreciate your prayers on this subject!
As I mentioned, Allistaire’s little, silly, happy self has returned. She is still more tired than before and has significantly diminished her race track laps around the unit. Never-the-less, she is happy to play silly, coy games with all the nurses, doctors, social workers, etc. she encounters. It really is joy upon joy to have her cheerful spirit returning. Thankfully she has continued to be fever free (afebrile) since Monday and her blood cultures still have not grown anything. Our latest concern is a fair amount of stinky poopers which could indicate a GI-tract bug she may have like Roto virus. If they decide it necessary to test her stool and it comes back positive, she will be in isolation until she is completely free of sickness. This could be a week or more. Please pray that this doesn’t happen! Isolation means she cannot leave her room and Sten and I cannot access our refrigerator food or the microwave on our own; the nurses would have to do all of this for us. In addition, we would not be able to have any little people under 10 visit – this would be awful as our sweet nephew, Haaken, who is 5 1/2 is literally on his way as we speak driving with Sten’s brother, Peder, and our sister-in-law, Jess, from Montana to visit us.
Allistaire continues struggling to eat. She is eating so little it is astonishing to me. The doctors say this is totally common and to be expected with her counts so low. We are supposed to keep track of what she eats so that the dietician can asses her nutritional needs and calorie intake, but good grief when you eat 5 cheerios, 6 wee tubes of macaroni and a chip – what can it amount to?
And so, on to the sad news. The expected news. Allistaire’s hair started to fall out today. It’s on her clothes, her pillow, her hands (which means it gets stuck in her mouth because of sucking her thumb) and on her food. She refused to eat more than a few bites of her cheese this morning. I kept trying to get her to eat it. When I finally relented and picked it up to throw away, I discovered it was covered in hair. Hairy cheese? Yeah, I’m with Allistaire – not too enticing. I have to say it’s pretty sad. Here is an outward sign that chemo really does kill stuff. One of our sweet doctors encouraged me to just go ahead and cut it, to make it easier. After Allistaire’s bath I took the scissors and cut off two locks. Then Sten held her as I cut off most of the length. Now we know what it would look like if we had a boy. She really is such a cutey and tonight when I was putting her finally to sleep, I had to smile when I realized she looked like a blonde version of Sinead O’Connor which really is one of the most beautiful shorn women I can think of.