Anya Mae's Story: Day 27 Amazing Grace

Friday, July 13, 2012

Day 27 Amazing Grace

Anya is doing well since surgery, her lung volume is improving, oxygen numbers are good, and her ECMO settings are coming down. The big focus now is making sure the chest tubes drain, bloody fluid is sticky and could plug up the tubes easily, putting us back to where we started. Dr. Kays came this morning to clean out the tubing and again this evening. I would say he spent over 30 minutes tapping at her chest tubes to keep everything flowing. I left the night nurse doing the same thing. She was planning on bringing her book over and sitting by her bedside all night, tapping and getting blood clots to move. I overheard Dr. Kays telling all the people involved in her care that he was not on call this weekend, but he wanted to be called with all information on Anya anyway. ‘This is not a good time to change captains.’ He said. Songs should be written about this man.

Songs should be written about the nurses, ECMO specialists, and respiratory therapists as well. It is quite something to see them all working together for Anya. It is seamless. When I have been upset they have provided a lot of support. As a bonus all of them are real, fun characters who obviously have a love for what they do and have a great time doing it. I feel like a part of this team, and in a bizarre kind of way I am having fun, at least on good days.

I do not believe the old chestnut “God only gives you what you can handle.” I believe things happen, and God gives you the grace to handle it. Dr. Kays along with the team at Shands is God’s grace in action. I never went looking for someone like Dr. Kays, I thought I was getting the best care in St. Louis. I was looking for other CDH blogs to learn what lay ahead for us. Instead I found information about Dr. Kays. God led us here.

Through many dangers, toils and snares

I have already come;

'Tis Grace that brought me safe thus far

and Grace will lead me home.

3 comments:

Jennifer TenneyJuly 13, 2012 at 8:41 PM
I am so glad to hear that Anya had a good day today! I was thinking about her all day!!!! Many prayers for a good weekend and good progress. I agree with everything you said, and you say it so beautifully - God's grace. It is strange, but so true, how even in the worst of times, you really can have joy and even fun and laughter. Many prayers for a good day tomorrow. I know things will only get better from here!
Hugs,
Jennifer
ReplyDelete
Replies
AnonymousJuly 14, 2012 at 6:15 AM
So glad things are improving and you are in good hands. Sending positive thoughts your way.

Anu
http://ourcdhherolittlea.wordpress.com/
ReplyDelete
Replies
ChrissyJuly 14, 2012 at 6:48 PM
Just stumbled upon your story for the first time tonight, but will be praying for your sweet Anya Mae. Our Clara Mae walked this path 15 months ago and is now a beautiful, active, bouncing, healthy, inspiring blessing. I remember the feelings of days that were somehow... sort of.... fun? as you advocate and throw yourself behind your child. And I love what you've said about hoping Anya's life is not defined by CDH. That is my hope and prayer for Clara, too. Let us know if there's anything we can do for you. Peace be yours!!

http://thehardylife.blogspot.com
ReplyDelete
Replies

Add comment

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.