She is doing well.
Last night was rough, we really didn’t get situated in the room till nearly 2am.
Bob thankfully got the girls back to the place they are staying, at a decent enough time, to shower and plummet into beds. After they left, Bai and I started the routine of rolling from side to side, medications, attempts at drinks, back drainage tubes, cath tubes, and iv watch. We also had to get aquatinted with the nursing staff and get our bearings in our surroundings. Bai is in room 5223, on the 5th floor of Simon Tower. If you plan to visit, let me know, there are high levels of security to get through to her. Her art line died right as the clock turned to Tuesday, and was removed, which subsequently made her have to be stuck at 4am for lab work. All her vitamin levels came back in normal range! Thats right folks! Weeks of fighting and beefing up these things and we succeeded! Bai for the win! Her cath was removed early – another win and she and I caught about 2 hours of uninterrupted sleep before plastics arrived at 7am-ish. I’m very sleepy.
This morning, way early, PT showed up and wanted her up and in her wheelchair, so up and in her wheelchair she went. She tolerated it surprisingly well. If you are friends with me on fb, you will have seen some pics of her up and even taking some swigs from her cup. At 11am we went downstairs for her to have an X-Ray of the hardware. There was some miscommunication on this, nothing big, just a new piece of equipment that the neurosurgery staff was eager to use, but didn’t realize the child was required to independently stand to do so. Well, Bai did the old kind of X-Ray, which is perfectly acceptable.
The day has rolled past pretty quickly. Thank goodness. She has watched Nemo and Dori – 2 times each and Charlie and Lola. She has half played with toys and eaten about half of what she eats in a typical day. I think that is a success. Also, she has barely whimpered. Warrior status attained.
If she wakes up a little more, here shortly, I’m going to get her up again and try to get her to eat some more. She is very unhappy about the rods going up into her neck this time and this is going to take some time to get use to. Her hair is a mess and a bath is not in the near future at all. Tomorrow brings us one day closer to that – and one day closer to home.