Not a whole lot new to add today. Elizabeth is still on the same meds. Her oxygen requirement is still up and down some, but she has gotten down as low as 45% today (which is what she is on at home) but that only lasted for about 20 mins and she had to be increased. But she has definately made progess in being able to wean lower and lower and not have to be on 100% all the time. Her other vent setting and nitric oxide levels are the same, they have not weaned any of that, which is good until she is more stable.
The new issue is her stomach problems, I mentioned that her stomach is huge right now. They think that all of the sedation/parazlying has slowed down her digestive system and she is now "backed up". They have attempted to start and increase her feedings and it seems to make things worse, because her digestive system isnt moving the stuff through. She has been getting miralax/colase for days and it hasnt seemed to help any. They have lowered the amount of her feedings to a very small amount giving her just enough to stimulate the digestive system....so we will see how things go the next couple of days.
The newest thing today was that we were informed that pulmonolgy made contact with Texas Chidren's Hospital in Houston. We had an interview with social work (which is common for possible transplant families). So our interview along with all of Elizabeth's medical records are being sent to Texas, they will review it and decide if they think she is a candidate and in need of further evaluation. We are still hoping that a transplant is not where we end up, but at this point we need to have all options available. As we know more I will update.
Other than that not much going on here, just trying to stay sane ;)
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