Anya Mae's Story: Day 87

Tuesday, September 11, 2012

Day 87

I think it is safe to say that I am ready to be home. Anya is too, her oxygen has been turned down to what she will go home with (300mg for those who want to know), we have started giving her bolus feeds, and she is getting bored in her room. Her central line needs to be removed but that is the only item to work on other than getting her equipment ready, and teaching us to use it. Feeding will be an ongoing issue; it should not keep us here. The plan is to be discharged sometime next week.

I am ready to go because I am tired of splitting up my life. Our family has been under three separate roofs for too long. I am tired of having to ask permission to see my baby. They are never rude about it, they are really polite up front, but you would think after a few months of good behavior they could just give you the code to get in. I want Anya to see the sunshine, to start having a real life.

Mommy! You get Daddy to create a distraction and then you can smuggle me out in your canvas bag!

I have been in insurance purgatory all day. Insurance issues are the bane of my existence. To everyone who wonders how I do this: the medical stuff for me is easy, it is this coverage business that drives me nuts. Add on to this that dealing with insurance junk kept me away from Anya for most of the day does not help my loathing of it. I would say my number one strength is the ability to find my resources in almost any situation. This skill has not helped me much today. Bleh!

I cannot wait to be done with this stuff and get back home!

1 comment:

Jennifer TenneySeptember 12, 2012 at 5:23 AM
This is the hard part Kelly! So close to home you can smell it but each day drags on! I remember our last 3 days in the hospital - I was sooo ready to leave - so sick of every single thing. The insurance stuff is a nightmare! Just keep at it and work on it a couple hours every day till it works out. Anya is adorable! I am so happy she is doing so well! I remember meeting you and believing with every ounce of my being that this day would come, but it's been a long and tiring road for you guys! Many prayers for a smooth and easy next few days and a smooth discharge!
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.