Thursday, March 7, 2013

Riding Out the Storm

Evan is officially on the books for his Fontan surgery. Sigh. 

First, I just want to say that I adore Evan's cardiologist and all of her staff. She has been super patient and accommodating to my 4,356 emails and requests related to this coming surgery (yes, I am one of those moms). They were able to reschedule Evan's heart cath so he could have his cath one day and his surgery the next, thus avoiding two separate trips to ACH. 

Evan's heart cath will now be May 20 and his Fontan will be May 21 (as long as all goes to plan and there are no emergency cases that take precedence). At first I thought "Wow, May is so far away" and then I realized it's already March and this is only two short months away.. Sad face. I'm ready to get this final staged surgery behind us, but not looking forward to handing over my baby for a third time. It's just not fair. 

I've also been asked numerous times lately why Evan is having a third surgery and what will be done to his heart.. It's complicated and hard to understand if you're not in the medical field (or a heart mom), but the following videos are quick and accurate descriptions of what Evan's heart defect looks like, and what the surgeon does during the first, second, and third surgery to make a HLHS heart support the entire body with one pumping chamber. Every time I watch these videos, I get chills. We are so blessed to live in a time where the technology and skill is readily available to save Evan. 

Hypoplastic Left Heart Syndrome 

Stage 1 Surgery, aka the Norwood. (This is the surgery Evan had at 8 days old) 

Stage 2 Surgery, aka the Glenn. (This is the surgery Evan had at 5 months old)

Stage 3, aka the Fontan. (This is the surgery Evan will be having in May)

And there you have it. Another question I am frequently asked "This is the last surgery, right?". Well, yes and no. This is the last planned surgery. Evan's heart is working double time to function with just one side, and there are repercussions to that. No one can say for sure if he will need another surgery in the future, only God's will and time will tell what Evan's future holds. 

We are trying to be strong for Evan, but I am still finding myself weak with fear. I know we serve an awesome God, and he has taken such great care of my little guy thus far, I can only have faith and believe He will continue to do the same. Right after I got the confirmation for Evan's surgery, my mom sent me an email with a youtube link to a song called "Riding Out the Storm". It literally hit my inbox less than 60 seconds later. And it was so powerful. Oh, God's timing is so perfect. "Just hold on to Jesus, and ride out your storm" Amen. 

I will continue to update as we get closer to surgery time. Please continue to pray for my little guy..

One last thing, I just want to say how overwhelmed and appreciative I am to everyone who is eager to help fill Evan's treasure box (see previous post) to help ease this hospital stay. I'm sure everything will come in handy! THANK YOU! 

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