This morning we were told Anya may be ready for discharge tomorrow or Monday! We still need to get her to take more of her normal tube feeding and get off oxygen.
Anya continued to eat well for breakfast and lunch today, and then we gave her normal tube feed after lunch. She didn't want to eat any dinner. At 8 PM we started up her normal evening feed and let it run for a few hours before we stopped it. Her stomach has been kind of distended all day and I was a little nervous about giving her entire feed. In order to get her to gain weight for surgery, we were giving her 780 calories worth of tube feeding in 24 hours. She is supposed to get 1000-1100 calories a day. So only a few days after surgery we were starting her on 80% of her calories, when she had already eaten about 20-30% of her calories. Also, the tube feeding she is on is very concentrated, possibly making it harder to digest.
While the tube feeding was on hold, only 1/3 of it done, the Fellow working with Dr. Kays, Dr. Solomon came in, despite it being 11pm! He looked her over and said he was comfortable doing whatever made sense to us. We decided to stop the feed for now and see how tomorrow goes.
Anya has been so close to getting off oxygen! She is only needing 1/4liter. This evening we kept her off for an hour and she was 89-93%, not quite where they want her. She hasn't been needing much pain medication but she hasn't been doing anything but laying in bed. Our goal tomorrow is to give her pain meds routinely and get her up and moving. That might help her breathe deeper and get off the oxygen.
This morning I asked more about the pulmonary hypertension and the echo they did in the OR. Dr. Solomon said it was actually at her baseline, so I guess that is a non-issue. I am still a little concerned but will follow up with cardiology in St. Louis when we get home.
I have to say this has been a very smooth hospitalization, and I have been very happy with the team of people taking care of Anya. Looking forward to getting her home!