Anya Mae's Story: Day 51

Monday, August 6, 2012

Day 51

We are moving right along; Anya’s stomach is working a little better. Meaning more dirty diapers. The go-lytely will be continued until tomorrow and then they will consider feeding her. I just hope that something distinctive happens to show that Anya’s stomach is working normally.

The vent is still being weaned…slooooowlllllllyyy. When the vent-weaning process started (several weeks ago, I might add) I asked what the lowest setting was before she was taken off completely. There are several items that get weaned but one is the rate of breaths that she is given a minute. As a general rule, ten is the lowest number before extubation. (I am sure this is different from person to person though) The first time Anya was taken of the vent her rate had been at six for at least several hours. Two days ago she was at ten, yesterday she was at eight, and today she was at six. Dr. Kays confirmed that the plan was to wean her down two a day and then make another attempt. So theoretically Anya could be vent free by the weekend. I am hopeful but not holding my breath. She will get off someday but I just want her to be safe.

Today she got really pissed off (there really is no other term to describe it) and her oxygen sats went down into the 80s. After being repositioned and settling down, she took about 20-30 minutes to recover back to normal. Dr. Kays says this is going to be her normal pattern for a while, until she gets stronger. This is a sobering reminder to me that she is going to need a lot of accommodation for quite some time. Early in her treatment only perfect 02 sats were wanted; now that she needs to do more on her own she needs to struggle a little bit. The goals have changed slightly, this little bird needs to fly.

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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.