Anya Mae's Story: Post op day 1

Thursday, July 30, 2015

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!

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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.