Anya Mae's Story: Day 22

Sunday, July 8, 2012

Day 22

Dr. Kays showed us Anya’s x-ray today; her fluid had gone down to a level where he could get a good look at what is happening in Anya’s chest. He saw more shift of her heart to the left, which is what we wanted; as well as more lung tissue. Thank God. Dr. Kays is very anxious to ‘end this ECMO experience’ but in a very controlled way. He has started increasing her vent settings, they will need to be higher when she is off ECMO and going immediately from low to high vent settings is like asking a couch potato to go and run a marathon at a moment’s notice. She has also been started on continuous feeds through her NG tube!

He is also considering starting Anya on steroids. They will help get rid of any inflammation that is keeping her from getting off the ECMO as well as assisting with lung expansion. There are some risks with this; studies have shown that babies that needed steroids in this manner can have an increased risk of neurological (brain) issues. One possibility is cerebral palsy; I would guess others may be similar to what can happen with ECMO. The babies who were studied however were mostly premature babies; preemies have their own set of issues that can cause neurological problems, so it may be that Anya is at lower risk because she is not a preemie. I don’t think Dr. Kays is terribly worried about this happening, he is very thorough in protecting the baby’s brain (it was a large topic at our initial meeting). Also, Shands has never had a CDH baby develop cerebral palsy. Despite the risks I am very happy he has another trick up his sleeve, this isn’t something I had read about before in CDH cases. She can’t stay on ECMO forever, there are enough risks there!

I would be lying however if I said it didn’t bother me. This is another one of those ‘wait and see’ kinds of issues- the bomb could go off next month, 3 years from now, or it may just be a dud. Hopefully it is a dud! Dr. Kays has not made is final decision yet, he will make a decision in the next 24 hours or so. We are very hopeful that the next week will be very eventful and show a turn for the better!

2 comments:

Jennifer TenneyJuly 9, 2012 at 5:48 AM
Yay! Good news on the improved x-ray!!! I know Anya will get there! Many prayers for progress today!!!
Hugs,
Jennifer
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AnonymousJuly 9, 2012 at 6:03 AM
Yayay for more lungs and less fluid. Hoping this week brings much better news and more progress to the little girl.

Anu
http://ourcdhherolittlea.wordpress.com/
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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.