Quick update

Anya was admitted Tuesday (yes, the afternoon after she was discharged). She was still needing more oxygen than was expected and quite frankly was as scary as shit. In great wisdom or great folly I decided to drive her to Children's myself. She had been needing anywhere from 1.5L to 3L of o2 and her portable set up only goes up to 1.5L. Adam and I waited until we thought she would stay stable on 1.5 and took off. I was betting on Anya's typical behavior: she likes car rides and settles down in the car. We had her oximeter with us and Adam sat in the back updating me on her sats as I drove along. They stayed between 89-97% so I was happy, the risk paid off. It may sound like a reckless thing to do but if we had called 911 we would have probably been sent to St. Joseph and that would have entailed a long wait, waiting for an evaluation by doctors who don't know smack about CDH or her, and then arranging transport to Children's. I made Dr. Najaf nervous though :).
Dr. Najaf direct admitted her to the PICU so we were able to avoid the ER, I cannot thank her enough for this. Anya has been stable, though her oxygen has not been weaned down much. Her med doses have not been changed since her discharge from Shands; the plan was with weight gain she would wean herself slowly off the meds. She has been gaining weight so rapidly and well they believe she has weaned herself too fast, and they have increased her meds to compensate. They are doing another cardiac echo to make sure there is no change. They plan on moving her out of the PICU and to the floor today but I have mixed feelings about this. I hope they put of the transfer until this evening; I think Anya could benefit from being closely monitored for at least 24 hours. When she is on the floor there is a lot more pressure on me to reasure/explain her to the staff, and I am not confident that it is always appropriate to be reasuring. I think she needs a little more work up. My main goal is to see her through this and I pray she goes home on her old dose of oxygen, 0.5L. This 1L crap is for the birds, and I am very uncomfortable with it.
So everyone please pray some more that Anya can make it past this hurdle, and the doctors can figure out what it is!