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Monday, June 1, 2009

a few details

I had a chat with Evan's surgeon today. Dr. Devaney is the same surgeon who did Evan's first surgery. We really like him and his creditials are incredible - he does open heart 2-3 surgeries a week on children. Amazing.

There is a very good chance that he will put an artificial valve in Evan's heart. Evan's valve has shown in his first year of life that it has a high tendency to grow abnormally. His Shone's Complex causes him to be predisposed to this, and with the heightened abnormalities in only 1 year, we have every reason to believe that it will continue like this through his life. The thought is, yes, he can help it, but what's the point if he would need to redo it in 6 months or a year. If he does replace it, it should be okay until he outgrows it when he's 8-10 years old (estimates, of course, every case is different). He will be required to be on blood thinners, probably for the rest of his life, once a mechanical valve is put in. At least 2 more surgeries would be required as he grows, one between age 8-10 and another as a older teenager. Scary thoughts, but with Evan's heart, it seems regardless, this won't be our last surgery.

I asked him in relation to Evan's last surgery, how risky this surgery is and he said much less risky (yah!). Risk rates are only 2% - what an amazing statistic for UofM. Nationwide risk rates are closer to 20% in the first year. I have a number of questions emailed to Dr. Devaney, one of those being, long term success rates. I'm not clear how far out that 2% goes.

So, decisions will be made once he's in. Though, he said it's more likely that he will replace. He also will scrape away the supravalvular ring that's above his mitral valve.

Surgery will be Tuesday, July 7, we'll need to be there Monday to get him all set. We'll be staying with Evan off site Monday night (probably at a hotel), then Derek and I will check back into the Ronald McDonald house. Evan's stay should be shorter than his first stay, possibly as short as a week (wow!) but everything, of course, is pending how he does.

I have more details about the actual procedure, but my brain is fried today. Is there more you want to know? Let me know and I'll expand on it. I like learning all of the technical info, I feel that in the past year I've become an expert on the left side of the heart and how it all functions.

Much emotion surrounds our family this week, as Evan turns one year old on Wednesday. It can be disheartening to think that when Evan is 13 months old and 5 days, he will be having his 2nd open heart surgery. I praise God for my miracle, but my heart still breaks when I realize the life my little boy will have to lead. I doubt I'll ever understand why he has to go through this, why our family has to go through this, but Derek and I both leave our trust in the One who has control over what happens. God is so good, and we will continue to rely on Him and place our trust in him, where ever Evan's journey takes us.

Come to me, all you who are weary and burdened, and I will give you rest. Matthew 11:28

Praise God. Because I know we couldn't do this alone.


The Bowman Blog said...

thanks for the updates, Megan! We are praying with you and for you! We love you all!

Amber said...

Hey fellow heart family!!!! So nice to "meet" you...I will hold your little one and the entire family in my prayers.
Thoughts and prayers coming your way....