Sunday, April 26, 2009

9:30PM Update- Sun.

Kate continues to be brave. She has to take so many yucky tasting medicines and I feel so bad for her. She opens her mouth willingly for each one, though. It's amazing.

She ate less today than yesterday. :( I think she is totally burned out on the milkshakes that she has been drinking, and it must hurt too much to swallow anything else. We did find out that Cheetos melt in her mouth and she can get them down. Not exactly brimming with nutrition, but anything we can get down her is a triumph. She really does try. She wants the food but she chews and then holds it in her mouth. She eventually ends up spitting it out and trying another bite, which also gets spit out. Poor baby! I am so hoping the NG tube doesn't go back in.

Chest tube fluid output so far (with three more hours to go until we get a final number):
34cc's !!
She has to stay under 45cc's to have a chance of getting her chest tube out.

I am pretty sure her wound vac will come out tomorrow, since they didn't do it today. It will so great to have one less tube to deal with when we try to get her out of bed! The tubes get so tangled and then they pull at the wound entrance site.

She wasn't too energetic today--probably due to not eating much for the past few days. I took her outside with the help of a student nurse. Kate didn't want to go out and spent most of the time eyeing the student suspiciously. She doesn't trust anyone in a white lab coat or scrubs! It was so warm outside that I knew it would be good for her to get out. She only took a handful of steps, though, and is so wobbly standing up that I have to steady her or have her hold on to something. She can't stand alone. (For comparison sake, there are kids walking and running all over in the playroom with their chest tubes still in. She is definitely struggling more than some of them.)

Leaning on a bench while giving Mom a wan smile.

"My Mom made me come out here, but I've decided not to like it and I don't feel like smiling."

"My big sisters came to play with me tonight and they are so much fun!"

She fell asleep around 8:00PM tonight holding my hand. wah. So sweet. I had hoped she was out for the night, but alas, the nurse came in and woke her up. Drat.

There is nothing sweeter than holding a child's hand--even one with Cheeto dust on it.


1 comment:

Kim K. said...

I love the orange fingertips. I pray tomorrow allows for easier eating. Poor little thing. She's making huge gains. I'm hoping that nasty thrush clears up soon. Sleep well.