Anya Mae's Story: Day 6- ECMO circuit change.

Friday, June 22, 2012

Day 6- ECMO circuit change.

The day is not over, but I am too excited not to update now! Today Anya’s ECMO ‘circuit’ needed to be changed, basically all the tubing and other paraphernalia. They have to do this from time to time to prevent clotting and keep it from getting junky, to put it simply. This requires them to be off the ECMO for a short period of time; about two minutes or so. Usually the baby’s numbers drop during this period, because they are totally supported by the ECMO. Well apparently Anya is Supergirl because she ‘really didn’t care she was off’ to quote the doctor. Her numbers were stable the whole time she was off. They further decreased her ECMO settings as well! This is encouraging, but of course cannot predict anything; she could just as easily need to have her settings increased soon. The doctor did say that we may be able to get her off ECMO completely in the next five to seven days. The next 24 hours she will probably have some swelling, they need to hydrate after a circuit change and they stop the diuretics as well, but they can start them back again in 48 hours, so it will improve.

We are so blessed! I know that there may be rough days ahead, but I am enjoying the moment!

1 comment:

TriciaJune 22, 2012 at 7:10 PM
That is amazing, Kelly! That little baby girl is a fighter!! I'm so happy she is making progress! Thinking of all of you!
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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.