Anya Mae's Story: Day 76- We loves us some comfort flow oxygen!

Friday, August 31, 2012

Day 76- We loves us some comfort flow oxygen!

Today was an epic day. I was dreading today to start with, last night I had to go back up to the hospital to help calm her down. I was successful for a while but after I left the nurses had to switch off staying by her to attempt to settle her down. She did not sleep at all. At one point she was quiet for a few minutes and her nurse went in to see what was going on; she had gotten the c-pap in her mouth and was sucking away at it! Her oxygen saturation at this time? 100%!

This morning when Dr. Kays came in we discussed options. He decided to try comfort flow oxygen. This was a bit of a stretch, usually they go to comfort flow after having a more stable period on c-pap. Technically comfort flow cannot give the same amount of support that c-pap can; however she was fighting it so much that it wasn’t in her nose half the time anyway. Her oxygen stayed up pretty much even when she was pissed off. Comfort flow, as you can see in picture, looks like regular nasal cannula oxygen, but it is able to give her some pressure to help her breathe, like the c-pap. It is a world more comfortable than c-pap.

Anya did not miss a beat when they switched from the c-pap to the comfort flow. Her oxygen did not drop at all, and she immediately settled in a deep sleep. She stayed pink. I picked up Arwen and Val, and she was awake and happy for us when we came to visit. I think this is a real turning point for her. Hopefully this is the piece we have been waiting for.

It is so wonderful to see her so comfortable and happy without all that tape all over her face! Thank you God for this day!

3 comments:

ParrishSeptember 1, 2012 at 3:37 AM
: )
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Jennifer TenneySeptember 1, 2012 at 4:16 AM
YAY!!!!! I am so happy to see that picture!!! She looks so peaceful!!! I know how big of a relief it was to me when Dakota got off C-PAP - she got stuck on there for a long 10 days and was miserable the entire time! So happy for you guys!!! Keep it up Anya!!!!
Hugs,
Jennifer
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AnonymousSeptember 1, 2012 at 7:49 AM
She looks so beautiful and happy. Good luck on this big change.Soon she will be home with your big girl. Good luck.
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.