Daley Ponderings

Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway.  (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for stability as well as bringing things everywhere).  Various staff members thanked her for cleaning up the hallway)

Then we went to the playroom and painted for a while and got out some plastic animals and played with those.  She brought them to the "dirty toy bin" by herself and happily came back to the room.  We got a lot of mail today - tons of stickers (we actually have reached her limit for stickers...) and a doll and a blanket and some magnets, which she did think was more interesting than the stickers, but once they were all stuck, she didn't really play with them again - I'll be interested to see if she plays with them again.  The nurses are impressed with her "fan club", we put all of your notes on the window to help remind us how many people are praying for us.

She ate a few bites for lunch, though spit most of it back out - her taste buds are expected to be strange for quite a while.  She tried to spit out the animal cracker, but it dissolved before she had the chance and she ate two raisins right in a row, and swallowed the first one by accident...

I had a long talk with one of the nurses about what to expect and landmarks for leaving the hospital.  She will stay on various meds after she leaves, but we will be able to give them via her nasogastric tube, so we won't have to deal with the taste of the medicines.  She needs to be off her IV nutrition, which she said she is doing better than most - apparently most kids on the floor have to stop taking oral nutrition entirely and get all of the nutrition through IV, which then the gut has to "remember" how to function again, so she is one step ahead there.

Her white blood cell counts are doing well - 0, 30, 60, 115 for the past four days, if I'm remembering correctly - there might have been a 15 in there.  I've been meaning to write some software to take in the blood labs and output a graph to make it easier to see how everything is doing, but haven't gotten around to it yet.

She is still on a continuous drip of morphine, but hasn't had any Tylenol in more than 24 hours.  She did wake up roughly from her nap, so I'm wondering about "pushing the button" for the morphine, (which they halved the dose from previous, since we weren't using it anyway due to maybe causing her nausea, though we aren't 100% sure that is the case).  Her "output" is starting to get a little more normal, and her white blood cells are at work, we can see signs of healing where she used to have open sores.

She just woke up from a four hour nap, which is a lot, but less than the 12-16 hours she was sleeping just a few days ago.  She gets very frustrated when we don't understand what she is trying to say, so all of us are working on patience.