Elizabeth had a pretty rough morning. I stayed at the Ronald Mcdonald House last night and around 8 am Matt sent me a text saying she was having problems. Apparently she woke up and her saturation started to drop, which is kinda normal when she wakes up. But she did not respond to the sedation or 100% oxygen and continued to drop. Her saturation got into the 50s and they had to bag her to get her back up. They turned all of her vent settings/nitric/oxygen back up, to be sure none of that was the issue. And paralyzed her again. After suctioning her trach multiple times she finally chilled out and was able to recover. They allowed her to come out of being paralyzed and were eventually able to wean her oxygen and nitric settings back down, but left the vent settings higher. They think her trach may have just been plugged off, which was blocking her airway. She has been stable to rest of the day, other than the same sedation issues. They have changed her meds up some. They think that the high dose of versed has actually be causing her to have dillusions and could be contributing to her not being able to "chill out" when she is awake. They plan to wean her off of the versed and give other drugs (ketamine, chloral hydrate) and give her pentabarb and ativan more frequently. On top of those drugs she is also on a fentanyl drip and methadone. Needless to say, after her transplant she will be on a some serious medication to prevent her from going through withdrawls from these very strong medications. Another hurdle she will have to over come on top of recovering from a major surgery.
As far as insurance goes...we are still waiting. I spoke to the hospital financial counselor (the guy who is getting the approval) and I spoke to one of our insurance case managers. I was told that her paperwork is being reviewed and we should have an answer soon. Not sure what the problem is, I mean they approved her for a transplant evaluation, common sense if she needs an evaluation there is a good chance she will need the transplant too!! Sometimes I just dont understand the whole insurance process, which I am sure most of you dont either.
The transplant team is meeting again tomorrow and will discuss Elizabeth again, and the issue surronding the one surgeon who has questioned her neurological development. We were told that this would not hold up her being listed, but hopefully it can be resovled tomorrow. That way once we get insurance approval there will be no reasons to delay listing.
Today's events are just a reminder to us how sick Elizabeth's lungs are. The longer we have to wait the worse she will get. She has such a hard time with any little set back that the sooner we can get her to transplant, the better chance she has of doing well with it.
Hoping for continued stability and for insurance to get it together :)
Also a big THANK YOU to Shannon and Cindy for going on Channel 12 this morning to share Elizabeth's story and promote the upcoming fundraisers.
For those who did not get to view it:
http://wdef.com/video/01/2011_8
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