Anya Mae's Story: We love us some high flow oxygen again

Thursday, December 6, 2012

We love us some high flow oxygen again

This has been a really difficult 48 hours for us. Last night a cardiologist came to visit and discussed several issues that may be Anya’s problem. Her cardiac echo did not indicate that the only problem is pulmonary hypertension, so several other ideas were being thrown around. One of the ideas would indicate a cardiac cath was needed. I immediately voiced my concern about a cath unless it was really necessary. A cath would require Anya to be intubated again, and we have been told it would be difficult to get her off the vent if she was put on.

Last night my mind was reeling from all of the possible issues Anya could have when she was transferred to a stepdown unit after dinner. Shortly after midnight she started desatting and breathing hard and I brought it to the nurses’ attention. The resident was called as well as the quick response team and the decision was made to transfer her back to the PICU. One of the staff commented to me that it must be a difficult night for me; I commented that it was just what I was doing at home, only I didn’t have a rapid response team and a PICU to send her to. Usually she is not desatting to the point she was last night however.

She stabilized a bit overnight but still was having periods of breathing hard and desatting for no apparent reason. Dr. Najaf came and explained that they now believed Anya has some inflammation in her lungs, all the advanced life support she needed can cause problems with how the lungs work. Now the plan is to give her five days of steroids to clear that up, and wean her slowly back to a home-manageable amount of oxygen. She reassured me that this is nothing new, and should not affect her life long term. However, she is probably going to be in the hospital another week or more.

In addition to the steroids Anya was started on high flow oxygen, many of you may remember that is the same setup that Anya had after her c-pap in the NICU. It has made her much more comfortable, for the past 48hours she spent a lot of time desatting and recovering from desatting. Since the high flow was started she has had enough energy to be cute and play with her hands!

I finally came home tonight to sleep; I have been spending the night. I am praying that we finally have our finger on what is wrong and it can be resolved. I need as much patience and peace as I can get. Also trust, as I do not know all the people that are caring for Anya right now and it is difficult to let go!

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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.