Anya Mae's Story: Holding steady

Friday, December 7, 2012

Holding steady

Today was fairly uneventful. Anya stayed in the PICU, there are no plans to move her until she can be weaned off of high flow oxygen. They did attempt to wean it down a bit and it was laughable; her sats dropped like a stone. She had only been on steroids for 24 hours, she needs more time. Slowly everyone is learning Anya’s needs; she needs to move a lot slower than their usual patient.

I would have wished to see more improvement but am trying to be patient. Anya is a lot more comfortable, breathing more evenly and her pulse is lower. She is going to be on steroids for five days so her last dose should be on Monday. Still thinking she may not get out until late next week or even later.

Everyone is amazed at how well she looks despite what she has gone through. OT has been seeing her and she sat up for a short time with a little support on her hips. Day before yesterday she rolled over on one hip herself. Anya doesn’t know she is sick. She is smiling a lot and charming everyone.

We are going to try to have some semblance of a normal weekend, we had a lot of activities planned. I pray that Anya starts to improve!

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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.