Day 32

Well, Hailey still seems to be doing well today.  Her blood gases went down a little so they switched from a cpap to a bipap.  I guess a bipap does a litle more to support your breathing than a cpap. A cpap puts out continuos pressure to keep your airway open but does not help you breathe if you miss a breath.  A bipap has continous pressure and gives you breaths if you miss them. To any of you in the medical profession, if I am saying this wrong you can straighten me out on this. I asked a nurse about it today and this is what I came away with but I wasn't totally sure.

Hailey does not enjoy being on the bipap and she didn't like the cpap either, but her heart rate and oxygen levels show that it is still preferrable over the tube and doesn't bother her as much.  Still, she has been a little fussy so I have spent all day yesterday and today at the hospital rocking and holding her to keep her comfortable and try to keep her levels where they are supposed to be.  She still doesn't really make any noise with her vocal cords, you can hear a little but not much, so when she cries it is almost completely silent and it is really sad.  So, I try to keep her comfortable. It still seems like she is happiest when she is in my arms.  I admit I am too.

Today they gave Hailey one of her scheduled sedatives and it made her sleep a little too much so her oxygen saturations dropped a whole bunch and we had to kind of stimulate her to get her to wake up by rubbing her legs and tummy, etc.  It was the same dose she has had for a long time, but when the breatheing tube is out, it no longer irritates the child, so the sedatives tend to work a lot better than they usually do otherwise.  They cut the dose in half to make sure that doesn't happen again, but the doctor told me that the sudden decrease in that particular medication may give her withdrawl symptoms including vomting, fevers, aches, diarrhea, fusiness, etc.  They are going to put some small "rescue doses" known as PRNs on order in case she has those symptoms. That way, she can be gradually weaned off the drug, but still not have a large amount all at once like she did today. 

I continue to be amazed by all the wonerful people I am meeting and interacting with.  A new mom in the pod (the big room where Hailey is staying) came in with her little girl who had heart surgery yesterday.  Before she had been in the room half an hour she was over introducing herself and offering her house if we needed to go somewhere for Christmas as she and her husband are from somewhere in California about an hour away from here. She said they have a lot of family around so offered to run errands or grab food from the cafeteria for me since I am here alone.  It just amazes me. Her name is Eshanti and she is just lovely.  Katie has also been amazing. It has been so fun for us to run around together and have each other to talk to.  She and I went shopping for Christmas gifts together today. It was really fun.

Hope you are all well and enjoying this wonderful time of year!