Evie didn't sleep well Friday night (12/7/2012), but it was a pretty good day--peaks and valleys. She's nearing two weeks without being allowed to eat anything and is also still barred from drinking anything either. That has led her to get a bit cranky. She has recent orthodontia work that is causing her grief, but there is no good resolution for it (the on call dentistry specialist evaluated her again today.) Hopefully she'll be able to drink again soon--which still won't really fix the issue, but she'll be happy enough that it won't matter. We eventually sidestepped the sadness by making a list of breakfasts she wants me to cook in the days that follow her triumphant return. It was odd to me that it helped her feel better--It only made me hungry.
She was able to have her bed linens changed today and have a sponge bath which at first made her cranky (too much moving, and it gets cold fast) but then she was soooo happy to feel clean again.
A bad good bad thing happened today. She's been hooked up to a 24/7 continual dialysis machine and today her blood clotted inside the machine, making it unserviceable. Bad that the machine was clogged. Good that her blood clotted, because she is anemic, so she doesn't take blood thinner like everyone else does, so having her blood clot was a good sign of improvement. It was bad, because the amount of her blood wasted in the machine was not insignificant.
She did not feel well most of the day, but certainly felt the worst after going off dialysis. The 24/7 machine takes the toxins out of her blood so slowly that if she stops it abruptly (as will happen with clotting) her blood toxicity ramps up quick making her feel quite lousy. She was off dialysis for not quite six hours and it was a noticeable difference. The issue is compounded by her pancreatitis as it inhibits her body's insulin production which leads her to require an external insulin source. She's getting glucose (blood sugar) from several sources, her own body produces it, the steroid she's taking leads her to produce increased amounts. She's also getting glucose from her TPN (nutrition mix). Lastly, the fluid that the dialysis machine pushes into her contains more glucose. So as you can see, there is plenty of blood sugar to go around, thus the need for an external increase of insulin to help her body process it. Perhaps Evie's Grandpa could put into his own words just how sucky she's led to feel then when she has *lots* of insulin coming in and suddenly her glucose provided via dialysis suddenly drops off completely. The opposite problem occurs when the dialysis machine first kicks on, and she has far higher glucose suddenly than the amount of insulin she has to process it. The doctors and nurses are of course aware of the negative impact of such sudden swings, but you'd be surprised how difficult it is to predict accurately what must be altered and when to compensate. Our body does a great job when everything functions properly, and modern medicine does its best to replicate it, but it just doesn't quite match it yet.
The truly unfortunate part is that when she is off the dialysis machine, that is the one opportunity we have for her to move around a bit and try to get some out of bed time, but for the reasons described above, she doesn't feel well enough to do so. She did get to stand on her feet and balance today which is a good thing. The concern of course is that she has been bed ridden for two weeks, and with her Osteogenesis Imperfecta--I am already ultra concerned about potential muscle and bone loss. I've requested for a physical therapy consult, so that we can figure out some stretches, and anything else possible to limit such atrophy. In her condition the last thing she needs is another break, because at this point it would lead to more breaks, at that point it is hard to turn the ship around.
Other highlights of the day include skyping with her sisters and brother in the morning, although at the time she felt lousy--she says she doesn't want to skype with anyone anymore unless she is feeling well. She also got to see Heather in person in the afternoon, so in spite of feeling kind of lousy she was happy because her mom was here.
I enjoyed hanging out with Marissa (10), Breanna (6), and TJ (18 months), even though it was only for an hour. The girls seem to be in good spirits, although they are anxious for the return of their sister.
No comments:
Post a Comment