Anya Mae's Story: Day 9- We gotta get this kid off ECMO!

Monday, June 25, 2012

Day 9- We gotta get this kid off ECMO!

Anya started off the day by having a clot in her tubing; the doctor cleaned it out before it became an issue. He is hoping she can be weaned off the ECMO soon; some babies are predisposed to making clots and apparently she is one of them! We are well on our way though, they were able to take her settings down today. When they cleaned out the clot she needed to be taken off the ECMO and again her numbers all stayed stable! I believe they are aiming for tomorrow, but that may change. ECMO is the most dangerous thing that Anya has to overcome, getting off of it is going to be a HUGE milestone!! It was hard to leave her this evening, I pray everything continues to go well tomorrow; that she is taken off ECMO and STAYS off!

1 comment:

TriciaJune 25, 2012 at 8:53 PM
I'm praying that tomorrow goes well!
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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.