Anya Mae's Story: Day 26- Thoracotomy

Thursday, July 12, 2012

Day 26- Thoracotomy

Surgery was successful! Dr. Kays removed three ounces of blood from Anya’s chest. Go to your medicine cabinet and pull out one of those medicine cups that comes with cough syrup: three of those is how much blood was in this crazy tough baby! He explained that one ounce is the size of one breath for a baby this size. I am left wondering how Anya had made any improvement with all of that in there. Her lung volume was already looking better only two hours after surgery. Her stomach was completely flat: the blood was pushing on her diaphragm and compressing her stomach; that must have been the cause of the bloating and gas.

She has two big chest tubes in her chest to drain anything else, there was no sign of active bleeding during surgery. Over the next few days her lung volume should improve, she can get off ECMO, and then the risks of bleeding will go way down, so the chest tubes can be taken out and we can move on. There are still crazy things that can happen; we are still on the roller coaster so there still may be unforeseen ups and downs. God willing we are through the worst of it!

2 comments:

UnknownJuly 12, 2012 at 8:09 PM
So glad to hear Anya's surgery went well! (And glad she got the CT so they could figure out that something needed to be done!) I've been praying for y'all today. Time to make some progress, Anya. You can do it!
Leslie
www.babybeehelms.blogspot.com
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TriciaJuly 12, 2012 at 8:17 PM
Oh, Thank God! I have been waiting for your update! I am so glad to hear the surgery went well and she has already made improvement! What a tough, tough little girl! She is such a fighter! GO ANYA!!!!
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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.