Anya Mae's Story: Post Op day 3

Saturday, August 1, 2015

Post Op day 3

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!

No comments:

Post a Comment

Summary of Anya's story.

Anya was diagnosed at my 20 week ultrasound with congenital diaphramatic hernia. Over the course of about a month multiple tests were done to determine how severe her case was. A group in St. Louis told us since her head-to-lung ratio was at 0.8, with three being normal and lower than one being severe, she would not have much chance at survival. In fact, one doctor said it would be 'ethically optional' for us to attempt treatment; she was so severe that any treatment would be futile.
Doing research online I came across Dr. David Kays, a pediatric surgon at the University of Florida in Gainesville. Babies under Dr. Kays care have a 90% chance of survival. Nationally the survival rate is 50%. We flew down for a consult and he did agree that her CDH was severe, and he offered us no promises, but he thought she might have a 65% chance at survival.
We relocated to Gainesville the 36th week of pregnancy and I was induced in the 37th week. Anya's CDH repair was done the morning after she was born; there was a very brief window where she was stable enough to be operated on. Only hours after surgery she was put on ECMO, Dr. Kays had spent the entire day with her, guiding her care.
Anya was on ECMO for 30 days; during this run she had a bleed in her chest and needed a thoracatomy to remove it. She improved after the thoracotomy and was able to come off of ECMO.
Weaning Anya off the vent was a big challenge. She was extubated three times before she was successful. After the second failure she had a nissen fundoplycation and a g-buttton to treat reflux, the thought was that if she was able to digest feeds her lungs would be stronger.
She is still working on overcoming the CDH issues. She still uses a G-button to make sure she gets enough calories. She gets speech, PT and OT but is well on her way to catching up.
Adam, Arwen, Anya and I thank God for all of the blessings he has provided on this journey: family and friends who have been extremely supportive, the fantastic staff at Shands, and of course Dr. Kays as well.