We finally got to move out of the PICU and into the neuro ward (really just a general wing on the 3rd floor of the hospital) this afternoon. Clara was fussy all afternoon and we were looking forward to having a regular room where we could take care of her and let her and Brooke get some sleep. Alas, this part of the hospital uses double rooms so sleep wasn't going to happen. Our roommate was a 2 year old hispanic girl who would just randomly start screaming (and I mean SCREAMING) and begging for something to not happen. I'm not sure who thought that it would be a good idea to put double occupancy rooms in a children's hospital (where the rooms already have to be double occupancy to account for parents).
I was able to convince Clara to go to sleep around 5pm. She had been up since 2am the previous morning with only one small nap and was being a very grumpy girl. She had a similar episode (awake for 3 days with little sleep) after her second PICU visit and being sedated for a long period of time. She was obviously very tired and slept through the screaming in our room. Brooke tried to get sleep but couldn't manage any. We finally got the nurse to move us into an empty single room next door around 10pm.
This new room is like a suite. There is a giant floor to ceiling window overlooking a small balcony garden (no balcony) and more floor space than our oncology room. Unfortunately the room is an isolation room (since it is 1 person) and if a patient comes in who needs it we will be bumped. Because of that Brooke originally declined it, but after a bit more screaming I think that she accepted that some sleep would be better than no sleep. I left them at 12:30am with both Brooke and Clara sleeping soundly. Clara slept though 3 diaper changes, two vitals, and a myriad of beeping syringe pumps. Hopefully she will keep sleeping so that Brooke can get some rest, though I have a feeling that she will be up in a few hours.
We should be moving back to our home in 1 North (the oncology wing) tomorrow or the next day. We seem to be caught in a little bureaucratic or maybe territorial scenario where the neuro doctors want us in the "neuro" wing (where we never saw a neuro doc). Our old room is still open so if we are lucky we can just move back in to our old room tomorrow and be done with shuffling around the hospital.