Wednesday, January 16, 2013

The Black Cloud.

From the day we found out about Evan's heart, we knew he would need three open-heart surgeries to live. With the first two surgeries 20 months behind us, we knew it was a matter of time before we started talking about Evan's final planned surgery, the Fontan. It's been looming over us like a black cloud. This black cloud has become more present in our life as Evan has become more active and his oxygen saturations have been slowly getting lower than they were right after his second surgery. He has been extremely winded after a few minutes of physical activity.

Yesterday, Evan had a regular cardiology appointment. He had his echo first, and sat pretty still for the duration of it, watching his favorite DVD, Mickey Mouse! Next came his weight check, blood pressure checks, oxygen saturation, and EKG. Everything looked great. His O2 was about 80-81 in the office.

We patiently waited a few minutes before the DR came in.. Just kidding. I chased Evan around the entire office while we waited, this kid does not sit still anymore and wants to get into everything he can find! Luckily we were the only ones waiting! His DR came in and we chatted about how Evan was doing, how big he is, etc.

Evan's heart function looks great. His tricuspid valve and new aortic valve are not leaking anymore and we will be stopping one of his medications. Yay! Then we started talking about Evan's O2 saturations and how winded he is.. And she dropped the F bomb.

Evan will be having his Fontan this spring.

I was in a little bit of shock! Yes, I knew it was coming, but at the earliest I was anticipating Evan's Fontan to be next spring, after he was 3. I trust our cardiologist 100% and agree with her judgement wholeheartedly. Best to get this last surgery out of the way while his heart is healthy than to wait until he deteriorates and needs it.

I've had 24 hours to process this news and I am still filled with anxiety. Yes, I knew this was coming, but it doesn't make it any easier. I'm worried about my boy. The very last thing I want is for him to be in pain, and not understand what is going on. Evan's communication skills are delayed; I worry he won't be able to communicate his needs or feelings.. I worry something will go wrong, worry that he will suffer complications post-op, worry that our last hugs and kisses before surgery will be our last forever.

I'm anxious to get our last surgery over with. But I want to remind you, Evan will never be "fixed". These three surgeries will never make his heart whole, he will always live with just half of a functioning heart.

Several friends have asked what they can do to help. Pray. Right now we are asking for prayers for our sweet boy, for wisdom to choose the right surgeon, wisdom to choose the right center, for strength for Scott & I, and understanding for Elli. She is so worried for her little brother.

We also ask that you join us in praying for our fellow heart families that will be in our same position in just a few months. Austin, Jasiu, Xavier, Bodie, Jake.. I adore their mommy's and they need the support too!

Right now Evan is scheduled for a heart cath procedure April 11th. His Fontan will be sometime in May.

We appreciate everyone's thoughts, prayers, and encouragement! We definitely could not have survived this journey this far without you all. <3

And in other news, Evan is completely in love with his gifts from Santa! He loves to play outside and is getting more and more brave on his little climbers. He is such a joy to watch, always smiling and laughing! Since he started walking, he was been quickly mastering his goals at physical therapy, I am one proud Mama!


  1. I am so happy that Evan is all over the place, itsn't it such a blessing :) Thank you for the prayer requests, I know they are working and I keep Evan and your family in our prayers as well. I'm glad Evan is good for you at your appointments, it must make it a little bit easier, Jasiu on the other hand screams for most of the appointment. Hugs as we endure the next steps of this journey.

  2. Our boys are definitely heart brothers...almost the same path. We will look to Evan to lead the way for us. Don't be surprised if I am coming to you in July for support. Thank you for asking for prayer for my X man...we love you guys! Keep on rockin it Evan!

  3. My thoughts and prayers will be with you as you face into the Fontan. My granddaughter had the same surgery last April. She was a little over 2 years old at the time. These surgeries are never easy and are so very scary. My hope is that all goes well and Evan will be bouncing back by summertime.