Anya Mae's Story: Day 74

Wednesday, August 29, 2012

Day 74

The big day is tomorrow! At approximately ten am Anya is going to be extubated again. Everyone seems very excited and think that she is going to be successful this time. Arwen and
Val are coming on Friday so hopefully Anya will be doing well enough for some cuddling!

In less fun news, the infection Anya has to her g-button is MRSA (Methicillin-resistant Staphylococcus aureus). It is often difficult to treat and spreads from patient to patient easily, so Anya is on contact precautions. Everyone is supposed to wear gloves and gowns when caring for her, even family. I don’t mind wearing a gown if I have to but I refuse to wear gloves. It is ridiculous that family, who never touch another baby, need to wear gloves. She has not had normal interactions with people due to her severity of illness; Anya deserves skin to skin contact. So far I have not had to argue with anyone on this point but I will if I have to.

There is hardly any redness to speak of to the g-button and the antibiotics are continuing, so other than being on precautions I don’t believe this is going to change much with her care. I don’t worry about contact with MRSA myself because I probably have it growing on me somewhere. Everyone has bacteria growing on them and people who are exposed to MRSA, like nurses, often have it in their nasal passages. It is possible that she got it from me, but she could have gotten it anywhere.

Praying for a successful day tomorrow!

1 comment:

Jennifer TenneyAugust 30, 2012 at 3:09 AM
Many prayers for today!!!! Good luck! I know Anya can do it!!!!! Dakota had a MSRA in her picc line - once the antibiotics kicked in it didn't cause her any problems at all. Thinking of you all today!
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.