Saturday, May 2, 2009

The Road to Recovery

I hate to admit this, but I never expected Ethan to be doing so well this soon after his arrest. There were some pretty dark days where I had basically lost all sense of hope. BUT, that hope has been restored. I'm learning to lean towards God instead of away from Him. I've been able to release my anger and focus on being strong for my son. Just a change in attitude has made a world of difference for me.

I still have TONS of questions, and I'm not pretending to understand why this is happening to us. I still wake up every morning wishing we were in our house, and not going to spend another day in the hospital. But I'm accepting the fact that we are. I'm accepting the fact that we aren't, nor will we ever be, a "normal" family ... and that's OK.

So, enough of that. How about an update?

As I mentioned, Ethan is doing really well. He had an echo yesterday which showed his heart function IS improving, slowly but surely! We don't know if it will ever get back to the way it was before he coded, but we pray that it will. This is very encouraging news because it, more than likely, means that a "sick heart" was not the cause of his arrest. So, what was?

The most likely explanation is that Ethan had been having micro-aspirations throughout the day on Wednesday, meaning small amounts of milk and stomach contents were being refluxed and then aspirated into his lungs. This impaired his ability to exchange oxygen and carbon dioxide appropriately, which built up the level of lactic acid in his body. The high levels of lactic acid caused his heart to become "stiff" and unable to beat and respond to the signals from the pacemaker. We've been told that babies have an uncanny ability to compensate up until the very last minute. When their bodies finally give up, it happens extremely fast, as we saw with Ethan.

Given that this is the most probable cause of the arrest, and given the results of his GI study (which showed severe reflux), Ethan is moving towards surgery #4. Sometime next week (hopefully) Ethan will head back to the OR for a Nissen procedure. A G-tube will probably accompany the Nissen. We are relieved to know this operation will pretty much get rid of the chance that Ethan will experience this type of reflux/aspiration event again. Tomorrow, we'll meet with the surgeon who will go over the procedure more in-depth with us. Speech and OT will continue to work with Ethan on his oral feeding skills, with the hope being that he doesn't end up needing the G-tube for any longer than he would have needed the NG tube.

The plan for now is to hang out in the PCICU until the surgery. Ethan will then come back here to recover, and THEN be sent out to the floor sometime after that. We're not even mentioning the "H word" until the day we're being discharged, so don't ask! :)

This has been the longest, most exhausting journey of my life. However, I feel your prayers lifting me up when I'm feeling weak, and I see the progress Ethan makes with every passing day. Please continue to pray for our family as fervently as you did when this all started!

We love you guys.

5 comments:

Brandi said...

This, too, shall pass, and things will get better. We're praying for you guys stronger than ever. Love you Joye!

Anonymous said...

Keep believing and praying. We will all do the same. We are thinking of you and your family.

~Emily

Lisa said...

The good news is there are no "normal" families! But, I feel very strongly that you will be, a VERY happy family :-) Praying for you guys!

Anonymous said...

Patricia Lynn! Thinking of your family, and have prayed many prayers for you all. Little Ethan has been an amazing baby, and been through so much!!!!!!!!! I know you guys are so tired, but happy about the way things are looking now. Keep all of your faith,and God will always be with you. God is good!!!!!!!!!! Love you all.

hkitt said...

I am thinking of your family and many prayers. God is our strength. Ethan is blessed to have Christian parents. Continue to focus and seek after our wonderful savior.


Much love,

Heather

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