This blog is for friends and family to keep up with us as Samuel heads to and through his open heart surgery on May 1.
For those that come across this page, Samuel is my 15 year old son with Down Syndrome. He was born with a congenital heart defect known as Double Outlet Right Ventricle (DORV) with a notable Ventral Septal Defect (VSD) and a small mitral valve. The DORV was "repaired" using a dacron patch across the VSD via open heart surgery on October 11, 1993 when Samuel was about 7 months old.
About 5 years ago, he was diagnosed with a muscle bundle in his right ventricle. The clinical diagnosis for this is Double Chambered Right Ventricle (DCRV).
As this has been monitored, Samuel's pediatrician / cardiologist has finally determined that he must now have surgery to repair this defect. He had been putting this off as long as possible in the hopes that this could be done in a non-invasive manner. Alas, this muscle growth out-paced technology, so this procedure will be open heart.
With that, I'm planning on being as raw as possible. I plan to share pictures right from the hospital and as much data as I can put up here, in as timely a manner as possible so that folks that care can follow the process.
20 March, 2008
Intro.
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4 comments:
Thank you so much for inviting me to be on this journey with you. I will be holding Samuel in my heart :) , and will visualize him in a healing aura.
In light, Erin
Thank you for sharing Dear Samuel's journey with us. You will all be in our prayers and we look forward to being with Samuel every step of the way to his full recovery. Please let us know how best we can help...being (almost) neighbors you are more than welcome to just drop in, ask to have something dropped off, etc. with no notice at all. Please give our love to Samuel and Victoria. I can't wait to see them both. Love, Nousheen
Dan and Row,
Thanks for all the updates on Samuel. Sounds like you're ready for med school. We will be doing what we, (me), agnostics do, to send Samuel good vibes as he readies for the procedure. We're lucky he is so strong and that he has such a wonderfully loving and prepared family. Thinking of all of you. See you soon.
Love - jorge
Thank you Jorge. We're ramping up. I'm going to put up a new entry later on what Wednesday holds. That is going to be a full day in and of itself. I'm glad I scheduled to have the whole day off...
d.
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