Anya Mae's Story: Day 54- C-pap

Thursday, August 9, 2012

Day 54- C-pap

Anya was successfully extubated today! She looks a lot better this time than the last, hopefully this will stick! Unfortunately when you get of the vent you go on C-pap. C-pap sucks. It is a bridge between the vent and regular oxygen; it pushes air into the nose to help the lungs expand. Air being blown up the nose is not the most comfortable thing, and it takes a lot of getting used to, usually a couple of days.

Anya spent a good portion of her afternoon fighting the c-pap, or recovering from fighting it. She would get mad, flail around, and this would make her sats drop. When her sats dropped she would get air-hungry, which made her more frantic, and she would flail more. Being air-hungry is the most uncomfortable thing I could imagine. I have taken care of patients with it; essentially makes you feel like you are drowning. Hard to relax when you feel like you are drowning. I think that this is the most uncomfortable I have seen her. Hence the suckyness of c-pap. She did get some meds to help with the anxiety, and she settled down. When we left she was snoozing away on her stomach. Hopefully she will only be on c-pap for a week or so.

Here is a picture of Adam helping her settle down:

Praying for more comfortable days ahead!

1 comment:

Jennifer TenneyAugust 10, 2012 at 6:35 AM
It does suck, but it is a good step in the right direction!!! Derek and I joked about making "I Hate C-PAP" t-shirts in newborn side. Dakota was a devil child on it. She would flail constantly - but it showed her spunk and it helped build her neck strength, believe it or not!!! I think she caught up in next strength on her C-PAP run because she would maneuver so much trying to get it off her face! Of course, eventually they get used to it. Most babies have a pretty short stay on it. Dakota got stuck on it for 10 days because she caught a staph infection in her picc line that we had to get cleared up. Plus she had a high heart rate, which eventually we realized was just her (I have a higher than average resting heart rate as well). Anyways, congratulations and many prayers that Anya's stay on C-PAP and transfer to nasal cannula will be short and easy!!!!
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.