Really not much to report...
Charlotte slept fitfully through the night. I didn't sleep much just because these chairs are so gosh-darn uncomfortable. She spiked another temp but it came down pretty easily again. I keep rubbing her belly and she falls back to sleep for periods of time.
She did ask for and drink some chocolate milk last night and she kept it down so they are going to give her more of the Lactalose in about an hour. We will see how that goes. We also took a few walks last night (at her request..yay!).
The peds unit is probably about the quietest I have ever seen it. You can tell that RSV/Flu season is about over. I think there were only 3 kids (including Charlotte) on 7 East last night and Charlotte was our nurse's only patient. I am sure the nurses enjoy days/nights like these as they don't come around too often.
Not much else to say...hoping for a poopy day.
GOOD NEWS: We have poop! It was a small quantity but this is definite progress.
Bad News: She is officially losing her hair. I noticed some hair missing around her scar area and found lots of hair on her pillow. It's pretty much coming out in clumps. A week to the day since the Vincristine so not too surprising.
We still have more poop to go to get her "cleaned out" so keep up the poopie prayers!!
The Poopie Prayers May Cease and Desist!
We now have had not only 2 poopie diapers but an explosion (to say the least) of bodily fluids and I will spare the details except to say that it all came out at once from both ends.
After a complete bed change, we are back in bed and relatively happier. Still some abdominal/back pain.
Word on the street is that we can cease and desist with the laxatives but her blood counts are very low so that is the next thing we need to battle. Antibiotics will continue and she should get some more blood soon. Can't really go home until she can keep her fever down, bring up her blood counts, and keep some food down.
Met with the nutritionist and they are looking for foods that we can get her to eat. They may also look at an appetite stimulant but that doesn't always work. We talked about milkshakes and when I mentioned "maybe you can add some extra calories into it" Charlotte said, "No Calories, mommy!". (She thinks the "calories" are a kind of medicine that would go in the shake!) Smart girl knows we sneak medicine into her food and milk sometimes. Anyway, we promised her a chocolate milk shake with "no calories" (wouldn't we all like that!)
We did get a bit of fresh air on the deck today and she picked a flower that she said she wanted to save "for Granny and Gramps". She is getting very excited about their arrival next week (as are we!)
Must go attend to the princess.
The rest of the day was pretty rough. Her belly pain/back pain comes in fits and spurts. The bowel stuff keeps "moving" although it is more of a liquid consistency (sorry if that's too gross)...
In a good bit of news, she is eating a little bit again. She's had some of the milkshake, some water, a few saltine crackers, and about 1/2 cup of popcorn. And nothing has come "back" yet.
Her counts were still very low and she had a blood transfusion for about 4 hours (I think about 30 ml of blood). They also have her on Lasix (a diuretic) because her BP has been abnormally high all day. Could be due to excess fluid. The body temp has stayed down around normal, though.
The hair has been "shedding" all day. It also got very matted in the back and in true Charlotte fashion, she has not let me comb it. She was complaining about it saying "Mom, there's a bow in my hair. Take it out." When I told her that it was her own hair all tangled up she told me to get rid of it. Long story short, at her request, I have trimmed some of her hair and what is left will be gone shortly so next time you see our dear Charlotte, she will probably either be wearing a hat or definitely look different.
I think I am more upset about this newest part than she is. She just seems annoyed at finding hair everywhere. It's sad to see all those beautiful curls go away. I know that her hair will come back eventually and that it will be "something new" when it does. It's just another part of her that has to change because of this disease and that's what stinks. At least those beautiful big brown eyes aren't going anywhere. Monica told her today about how some birds use hair to build their nests and told her how she could take some of her hair and put it in the backyard for the birds. I asked her if she wanted to do that and she said yes. So we will be saving as much hair as we can and taking it to our backyard "for the birds" (or the squirrels as the case may be in our neighborhood).
We will see what tomorrow brings. I'm hoping for a Saturday homecoming...
A big thanks to my darling husband for holding down the RnR fort today. I know he had a long day. Thanks to Miguel as well for his carpentry skills!!
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