Elizabeth was much more "awake" today. They decreased some of her sedation and spaced some other meds out so that she has more periods of being awake. She tolerates most of the time, basically her awake time means she is moving her legs and throwing her arms around. Today she had her eyes open more often, by open I mean barely open squinting at us but we will take what we can get. Her nitiric oxidie was stopped on Sunday and she has done well off of it. They were also able to stop the dopamine since her bloodpressue is remaining stable. She is still on the high vent settings and requiring 55% oxygen, but her saturations are staying above 95. So she is doing well considering how sick her lungs are. I know is sounds strange to say that she is making all this progress and it may look like she is "getting better". But the only reason she is not unstable is becasue the ventilator is doing all of the work and basically keeping her lungs open and working right now. She continues to have problems with increasing her feedings to her goal rate, so that is fight everyday. We have to pretty much fight daily with the ICU Dr about not trying to increase it too fast, this is the same issue she had at Vanderbilt. I am trying very hard to remain calm, but I am on the verge of loosing it on the next person I have to argue with about this.
The surgeon came by today to meet with us, Matt met him when we first got here, but I had never gotten a chance to talk to him. We were able to ask questions about the transplant surgery, and the possibility of the aortapexy. We also discussed the surgeon's concerns. Not sure that I feel any better about the transplant after talking to him, I think I am alot more worried than before. But Matt seems to be more reassured by the conversation. He said that he is concerned with Elizabeth's size, since her chest is small he thinks she will need lungs from a child that is about 6 months old, and then there is a concern about her healing after surgery since she has been on a ventilator for so long on top of being on chronic steroids. We discussed too many things to write about and too many things that I prefer not to discuss again. Its hard hearing about how things can go wrong. We are at a point where this is our only option so I need to hang on to all the hope I can.
Anyway, other that nothing eventful happening here. We have pretty much taken over doing her trach care, giving baths, changing linens, and diapers. They have discussed trying to let us hold her but neither of are really sure that its a good idea with the high vent settings. We prefer not to "rock the boat". I think the Drs are pushing for it thinking it will make us happy, but we both prefer to not push her too much and if that means not holding her so that she can remain stable we are ok with that. But we will see how the next few days go. As of yesterday we have been here 1 month, some days it doesnt seem that long, and others it seems like we have been here forever.
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