Anya Mae's Story: Day 16 Diuresing and circuit changes and raccoons- Oh my!

Monday, July 2, 2012

Day 16 Diuresing and circuit changes and raccoons- Oh my!

Adam and I were walking in to our room at RMD house tonight and through the window saw a guy with a raccoon on his shoulders. He has had her from a baby and she is his pet.

Just checking to see if you all were paying attention! Additionally, that kind of ‘meanwhile in Egypt’ kind of remark is a good metaphor for the phone call I just had with Anya’s nurse. Today had been mostly status quo; her swelling had improved but everything else was the same. I tried to spend more time with her today to catch her during a wakeful moment (fail), also to keep myself from taking a nap. (This is the most unemployed I have been since summer break during college, and I am at risk for sleeping most of the day everyday) I got ready to summarize today but decided it would be a good idea to check for any changes, we had last been in the NICU at 6:30pm, about four hours before.

Well four hours can make up all the difference. Shortly after we left the decision was made to change out Anya’s ECMO circuit. She tolerated it well, and her post-ductal oxygen is normal. Her settings are also down from earlier today. This morning I shared some of my fears from last night with her day nurse, and she assured me that a circuit change could be a turn in the right direction, instead of another hurdle. Wow. Whoever said that CDH recovery can be a roller coaster ride was absolutely correct. I did not see this turn coming.

So right now it is about 11 pm, and I am seriously considering running up to the NICU just to see for myself. I can always sleep in tomorrow J. God is good! Thank you everyone for all the prayers and keep them coming!

1 comment:

TriciaJuly 2, 2012 at 8:30 PM
This is good news! I am praying for you every day! You are in my thoughts!
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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.