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What's 1 more?

12:27:00 PM Edit This 2 Comments »
Gavin has been a complete and total champ today. I wish I knew more about hearts. How they work. What a heart echo is *supposed* to look like. What a 12 lead EKG is *supposed* to look like. I wish I knew more about Marfan Syndrome. Does he really need another "Syndrome" on top of everything else?!?! How is that even fair?!?! I did some reading about Marfan Syndrome the other night. I stopped after reading that until recently the average life expectancy for a patient with Marfan's Syndrome was 32 years old. I wanted to run away when we told the nurse about the *Deme's genetic aortic dissections and the first thing she said was, "Ah, undiagnosed Marfan's Syndrome." *And she wrote it in his chart!!!* I don't want it in his chart! I don't want him to have another syndrome! So far today he's had an EKG and an Echocardiogram. I couldn't tell anything about about either test while they happened so everything looked bad and very horrible to me. So I stopped watching.
Elizabeth Gorski

"My heart's having a meltdown." (Also titled PLEASE PRAY!)

9:54:00 AM Edit This 1 Comment »
We are on our way to the pediatric cardiologist with Gavin. We've recently learned that his biological paternal grandfather and his biological paternal aunt both passed away of dissecting aortic anueisms (sorry about the spelling and lack of links I'm on the road), which is genetic. Gavin's heart is already special because its flipped and I forget what's that called at the moment. So now we're on our way to pediatric cardiologist - who got us in today during a phone call Monday morning if that gives you any indication how serious this potentially could be.

Please pray.

PS The title is how Gavin describes his heart pain. I thought it was given the seriousness of the situation. I wanted to remember it.
Elizabeth Gorski

Ah...true love...

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