Dec 6, Thursday, Day 170, Long night.

11:15pm
Amazing how fast the mood can change around here. Wednesday night, Thursday morning was a very rough night. For some reason her cannula started hurting. It was hurting so bad she couldn't sleep. She was awake until 3:00 am. They had given her some pain meds, but they didn't seem to work till early in the morning. At 5:30am she was up again crying with pain.  They did a dressing change at 5:30 and we were all expecting to see a roaring infection the way she was acting, but it looks about the same, maybe a touch worse, but nothing alarming compared to other dressing changes. At 6:00am she went to sleep then had to be back up at 8:00 for a blood draw and 9:30 for meds. She used this opportunity to have a very lousy rest of the day. She went to part of school and PT, but has been dragging all day. She had a 3 hour nap and now, you can guess, at 10:55 pm Thursday, she is wide a wake. Her cannula's haven't hurt like they did but the night is young. Dr Yeh thinks the problem may have been as simple as the amount of dressing packed around the cannula's. It only hurt her when she was lying down.  When she sat up, the pain wasn't as bad.  So they adjusted the dressing and now seems to be doing better. The night will tell.

Since she had a lack of sleep, everything has been more frustrating, and a lot of tears. These are the days she really wants to get out of here (and I don't blame her).

For our evening walk, we went down and saw Chloe. Her vent is OUT and is starting to wake up a bit. She is doing great, may be up to 3 West by Sunday. We are all watching to see how Lindsey is reacting to Chloe's new heart. Right now she is excited. This gives her and all of us more hope. Maybe she will get out of here. The doctors and nurses have warned us though. As Chloe improves, moves up here to 3 West, then to the RMH, then eventually home, how will Lindsey react if she is still here on the Berlin. That could be pretty tough for an 8 year old to accept.  Again, time will tell.

Stacy and I are also feeling the cabin fever. Recently, there have been days they have had nursing shortages. When they have a shortage, then it is harder for nurses to take Lindsey on walks or to the Sobrato Room, or the the play room, meaning Lindsey stays in her room more. Over time, this really gets her down. Getting here out, on walks, to school, visit Webster, playrooms, whatever is the #1 thing we can do to lift her spirits.  When they have nursing shortages, then she can't do any of that. Stacy and I are starting to bring this problem up every time we see it coming.

Tonight, Lindsey and I were playing around with Mapquest. We were looking at maps from back home and she couldn't remember where we lived or some of the details from our home.  It will all come back, I know.