Anya Mae's Story: Day 40

Thursday, July 26, 2012

Day 40

Anya had a hard day today. She gave her nurse a run for her money in the morning, she got a bath and was a bit agitated. Her nurse today has had her a lot in the past week, we both agreed that she was not acting her norm. I was amused to begin with, thinking her sedation had been weaned enough that we could see a bit of the feisty attitude that makes her so tough.

Then she threw up L. For several weeks now she has had a tube suctioning out her stomach to keep her bloating down. The bloating was better this morning so they left the tube in and took off the suction. Any extra air can still come out of the tube, and she was belching a little bit so it seemed ok. As the day went on her stomach started to look a little too big to me, and I was just going to ask her nurse if she would think I was nuts if I measured her belly again, when she threw up.

The rest of the afternoon she was really restless, couldn’t get comfortable with the normal things that calm her. She gave Anya some extra pain medicine, which worked for all of 20 minutes and she was awake again. Her oxygen saturations were dropping when she got really upset, but other than that she seemed to be fine.

After talking with one of the fellows (doctors who are getting extra training with Dr. Kays) her stomach was hooked up to suction again, and she settled down a little bit. I don’t think anything has really changed or worsened. We are guessing it is a combo of the bloating and getting her sedatives weaned. She moves more now that she is on less sedation, when she moves she can feel the intubation tube and all the other stuff connected to her, and it makes her uncomfortable. Despite all this stuff going on she still weaned down on the vent, maybe when she is off the vent she will feel more comfortable. We can hold her then so that should calm her as well.

Right now it is 9pm our time; I just called for an update and she is still uncomfortable, the nurse practitioners are seeing her now. Her blood gas from an hour ago looked good and she weaned down on the vent. I am going to go back and see what is going on, I will update the blog tonight or tomorrow.

10:30 pm: When I went up there she had just been given some pain meds and was resting; she woke up for a little and settled down after I held her head and legs for a while. Hopefully she will sleep for the rest of the night!

3 comments:

UnknownJuly 26, 2012 at 6:57 PM
Praying for a peaceful night for both you and Anya!
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Jennifer TenneyJuly 27, 2012 at 5:44 AM
Awe! Hugs for a hard day! Hoping for a better one today!!!
Jennifer
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UnknownJuly 27, 2012 at 12:05 PM
We don't know eachother, but a friend posted on Facebook raising awareness for your daughter. I am praying for God's healing on your daughter. I will continue to pray for her and your family. God bless.
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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.