Anya Mae's Story: No CT but that is ok!

Friday, July 6, 2012

No CT but that is ok!

Anya still had too much fluid on her for an accurate CT, so they may do that over the weekend if they need to. Her lungs are working a bit more, so they have been able to wean her ECMO down a little. In some cases she has ‘weaned herself’ down.

Somehow when Anya moves, or if she bears down, or if Venus is in its fifth house, or something, the pressures in the ECMO circuit change, and the ECMO comes down. It is what happened a week ago when we had to leave her alone for a few days. It was an issue then because when this happened her oxygen would drop. This afternoon her oxygen was normal, so the ECMO specialist didn’t worry about it as long as her numbers was fine. Dr. Kays came up and ordered to go ahead and wean the settings; after he did that she continued to have lower ECMO settings than he had ordered, with stable oxygen. Yay!

It really isn’t possible that she is going to wean herself off completely, but it is a step in the right direction at least. Her ECMO circuit is looking good so hopefully it will last a little longer. Praying for a ‘boring but improving’ kind of weekend!

2 comments:

AnonymousJuly 6, 2012 at 6:14 PM
Sending 'Boring but Improving' weekend vibes your way!! Good luck little girl.

Anu
http://ourcdhherolittlea.wordpress.com/
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Jennifer TenneyJuly 7, 2012 at 4:25 AM
Yay! Go Anya!!!! That is exactly what happened with Dakota when she was ready - her cannula shifted, but she basically weaned herself and then showed them she could handle it by keeping her sats and blood gasses up. What great progress!!!!
Hugs,
Jennifer
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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.