Anya Mae's Story: Day 35

Saturday, July 21, 2012

Day 35

Both of Anya’s chest tubes came out today, instead of just the one. They weren’t draining well, one was clotted off, but there is still a small amount of stuff to drain left. Some of it is draining into the dressing but she may need another chest tube. Hopefully she won’t but it isn’t a big issue if she does. Her tummy still has the same issues but she is pooping so that is good.

Her sedatives were weaned down a little more, along with her vent settings a little bit. We won’t be able to properly hold her until she is off the vent. Dr. Kays had a baby who was held while she was intubated and had a huge setback; it could have been complete coincidence or the intubation tube could have caused a scratch or something when the baby was moved. At any rate it is not worth the risk, especially when everything is going so well. When I held her a few days ago it was a pseudo hold: a real hold will be for longer than a minute and sitting in a chair, not balancing precariously on a stool keeping lines from pulling out!

Another issue that is being worked on is Anya’s neck. When they are on ECMO their head cannot face the side that the cannulas are in. Anya has been facing the left side for a whole month, they have been repositioning her to keep her head straight midline, and then gradually over to the right side. Sometimes the neck muscles are so tight that they cannot move that way at all; it can take a while to get them to loosen up. Anya was not too happy today when she was moved, but when I left her tonight she was sleeping facing the right side. The nurses agreed that this is a good sign and hopefully she won’t have problems. (This would be a great topic to discuss with a chiropractor. Dr. Hauser if you are keeping up I plan on discussing this at length when I get home J)

Slow but sure J

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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.