Post op day 1

At her visit with Joy and Dr. Kays

Anya had her hiatal hernia repair yesterday and everything went well. She needed a little more oxygen than they expected, but they were able to take the breathing tube out right after the surgery. She was on a normal nasal cannula and had 'blow by' oxygen running from a tube by her face. By the time we got up to her room she didn't need the blow by anymore, and we were able to wean down on her oxygen overnight. Her pain is under pretty good control, she is on around the clock Tylenol and can have the hard stuff in between. She has been watching a lot of movies and chewing on her blankets. She gets upset when staff try to mess with her but everyone is surprised how she takes everything in stride, and isn't afraid. We spent the night in a monitored unit and today they moved her to the floor.

Waiting for surgery to start

Yesterday was really painful for me. Right before it was time to take her back for surgery, the anesthesiologist started discussing her pulmonary hypertension, and said it was 'significant' according to a echo that had been done the previous day. This scared the shit out of me because at last year's cath, and then an echo six months ago, I was told her pulmonary hypertension was resolved. It was a huge comfort for me to think this was over, it hits so many of these kids so hard, changing their quality of life, and it made me feel better about the surgery.
They actually repeated the echo in the OR and Dr. Kays felt comfortable enough to do surgery. I trust him but am still worried about this new development. Right now he is leaving this discussion for after this recovery period, and then we will work with cardiology in St. Louis to see what we do next. I cannot think of a clinical reason why this would be happening, but I am no expert here. It is a comfort that she hasn't gotten worse in any way, if these numbers were real it would seem she would be showing symptoms.
Dr. Kays told us she would be in the hospital for four to five days. Tomorrow they will let her have ice chips and maybe eat a little. The main goals are pain control and getting her to tolerate food slowly so it doesn't damage the repair. So far these goals are right on track.
Adam and I were able to get a room in the Ronald McDonald House for the whole of Anya's stay. This is so helpful! I spent the night with her last night and came back to the house today to take a nap and shower. We are only a couple of blocks from the hospital here and it is nice to be able to take turns this way.
So generally, things are doing well, but there is this huge question hanging over my head. Praying for peace and healing. Thank you everyone for your support!