0 July 29, 2005 at 09:41 AM EDT
I will likely not be able to post as much, as Sam is awake more, and I don't like to leave the room when she's awake. For some reason today, though, she's sleeping late. She's been sleepy & crabby the last couple days (not unlike her mother!); this might be a "hangover" of sorts from the scope/anesthesia, or maybe she's just wiped out from being up so much more. She's refusing to try food or drink, but they suspect it's because she has thrush, which can make the throat sore if it spreads; they tried to treat it topically, but she either refused to open her mouth, or just spit it out, so they will start treating by IV today, and hopefully wipe it out soon. We need her to eat & drink, so we can ditch that feeding tube. She will have her trach "downsized" soon, and then capped for a couple days, and if she tolerates that, it will come out. We look for that to happen within the next week; she will move to another floor for that process, where they have more trach experience. Whether she'll remain on that floor or not is anyone's guess. They tried to test kidney function, but couldn't find a vein, and the other option was to put a catheter back in for 24 hours, but she was feeling pretty lousy at the time, so I had them wait on that; I guess they'll have to do something at some point, though, to see how the kidneys are doing--she still hasn't had any dialysis. Overall, she's doing okay, and perked up later last night when Daddy brought her a new coloring book & crayons, a puzzle and a new truck. I'm hoping when she wakes up today, she's back to her happy self.
Thanks,
Jessica
That's the best reason - being with an awake and happy Sammy is way more important than posting updates!

Thrush is awful - it makes food tasteless - so that's probably why she doesn't want to eat. According to my old neighbor, it makes everything taste blander than bland, like you're eating cardboard. Bleaaagh. Sammy has my sympathy!