Anya Mae's Story: Day 19

Thursday, July 5, 2012

Day 19

Anya kept treading water today with some slight improvement in her lungs but she doesn’t have quite the amount of fluid off that she needed so her diuretic was increased. Dr. Kays has not seen her heart and lung move to the left like he would expect, so now he needs to find out what is in the left chest. The chest tube had clotted off so he removed it today. It could be that her left chest is full of fluid, and there was just a small clot that plugged the tube; or it could be that there is a large clot taking up the space in the left chest. If it is fluid he could place another chest tube, maybe a larger one, and the fluid would drain and then she could improve to get of ECMO. If it is a clot or something else, he may have to do surgery to remove it. If you have been following for a while you remember that ECMO=blood thinners=bad idea to do anything where baby will bleed. Surgery can be done on ECMO but it is not ideal at all and carries lots of risk.

To see what is in the chest, he may order a CT of her chest. Unfortunately, CT’s are not portable. Anya did not even go down to surgery for her repair; Dr. Kays did it in the NICU. For those of you who have not seen the pictures of Anya’s space, here it is:

All of that needs to come with us. All of the stuff to the right on the picture is ECMO, it has it’s own ECMO specialist who watches the circuit 24-7 in shifts. To the left on the picture is the vent, a machine that displays her brain and kidney oxygenation, and then behind me some IV pumps with another monitor. In the middle, up on the high platform is where she is. I plan on trying to go along to the CT if at all possible, I would hope I could help in some way but I may just be in the way.

Tonight I pray that we can move ahead with the CT, that moving her along with so much equipment goes smoothly. I pray that the CT shows something fairly simple that does not require surgery, or if she does require surgery, that it goes well. Whatever what the CT shows, I pray it is possible to act on it soon so Anya can come off ECMO.

4 comments:

UnknownJuly 5, 2012 at 7:41 PM
Praying that your sweet girl can come off ECMO soon and that the CT (if they do it) is helpful and goes smoothly.
Leslie (www.babybeehelms.blogspot.com)
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Jennifer TenneyJuly 6, 2012 at 5:08 AM
Many prayers Kelly!!! I hope it is just fluid and a new chest tube helps, or whatever it is gets cleared up easily and safely!!!!! At least there is a reason why she is not getting off ECMO and Dr. Kays and his team will find it =). On another note, you are in Dakota's old space. I know there are only 2 ECMO spaces, but I consider that one lucky. That is where Dakota survived (7 weeks early), Noah survived (missing 90% of his diaphragm), Savannah survived (missing 98% of her diaphragm) - that is the place where miracles happen. Many, many prayers for a good day today!!!
Hugs,
Jennifer
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AnonymousJuly 6, 2012 at 5:39 AM
Many prayers and good thoughts your way for little Anya to get off ECMO soon. I hope the CT shows something that is easily fixable. Rooting for the little girl.

Anu
Expecting my LCDH-er, a baby boy Aug 24
http://ourcdhherolittlea.wordpress.com/
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KellyJuly 6, 2012 at 6:08 AM
Thank you everyone so much! Jennifer, I love that she is in Dakota's space!
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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.