Transferred to PCU

Well, what we were dreading actually happened today. Harlie was transferred to the Progressive Care Unit.

I know it might sound weird - but room 608 was our home for the last 2 months (well, 7 weeks - to be exact). It was VERY hard to pack up and move out. And let me just tell you - you accumulate a lot in 2 months!! Tom had to come and help me carry as much as we could do without to the car. I was really comfortable with all of her nurses and I really don't like being without them. It was VERY sad for me to leave.

Now we are in an open unit with curtains separating the beds. Hopefully, we won't be here much longer though. The good news is that her drainage is definitely decreasing. Everytime it has decreased before, it wasn't real because it was accumulating in her chest (the tube was clogged). But this time, she is not showing ANY respiratory distress. In fact, she is on ROOM AIR!!! YIPPEE!!!

So, I really think that we are very close to being able to remove the chest tube. I will know more tomorrow when I talk to her docs. The discharge nurse is so nice and she was very sympathetic about our move today. She said that she is going to continue to try to get us home with or without the chest tube. She said that she has met some resistance from our equipment company. They said this has never happened before and they are starting to get a little nervous about the safety issues. I think they are being overly cautious in that we are going to test the equipment here first. If it doesn't work, then fine. But, maybe we won't have to worry about it afterall.

Developmentally, she is definitely behind. But I am very pleased at the progress she has made despite the fact that she's been in the hospital for the last 9 out of 10 weeks. Her physical therapist said that she noticed a definite improvement from last week. She would have rolled over tonight for sure if it weren't for her trach collar. She actually reached for her little fish tank and tried her best to scootch her way over to it. It is so wonderful to see her starting to act more like a baby and less like a newborn. And she is cutting her second tooth. We are still not sure if they are going to be white or not. It is possible that they could be grey or spotted due to all the antibiotics she's been on (practically her entire life!) But I am hopeful.

Well, it has been a very long day so I need to get some rest. I hope you are all well. Thank you for your continued support.
Take care,
Christy