The Journey of a Sweet Little Boy and His Special Heart

Friday, February 4, 2011

A teaching post and clarification

Before Logan was born I thought I knew the "basic" anatomy of the heart; after all I took anatomy and physiology in college and am a fitness instructor, but I realized I knew NOTHING!  Now,  I feel like I should have some sort of honorary mom Dr. degree because I know more than I could have ever been taught in a college class.  I can be having a conversation with a mom in the cardiac waiting room and know more about her kids diagnosis than she does because I have read everything I can about CHD.  I have searched the web over a million times trying to find exact information on Logan's diagnosis, and it doesn't exist.  It was a little unnerving at the hospital hearing the doctors explain Logan's anatomy to the students each morning on rounds starting with "We have never really seen Logan's anatomy before, this is an unique case so we will spend a little extra time here explaining it."  Logan is definitely a unique little boy in every way.
Anyway, today I found this information on Tricuspid Atresia It is the closest thing I can find to Logan's new anatomy.  This picture of the heart is pretty close to Logan's heart now.  Really the main difference is Logan was born with a tricuspid valve (tricuspid atresia is not having the valve at all) but Logan's valve was small and deformed so they sewed a patch over it making it non-functioning (so pretty much not there).  If you read through this article, Logan was born too "pink" and had the first surgery for that called the Pulmonary Artery Banding, and is now following the rest of the steps as a single ventricle heart.
CLARIFICATION:  I know in an earlier post as I was describing the plan for Logan's future I did mention Heart Transplant.  That is WAY down the road as far as we are concerned.  We are hopeful Logan will be able to function on a single ventricle for a long time.  Paul Cardall made it until he was 36 functioning on a single ventricle before needing a transplant.  So he is not on a transplant list nor are we thinking he will be any time in the near future.  The single ventricle solution is still relatively new and evolving every day as the doctors learn and discover more, but the doctors have no exact time line or data on how long they last or what other complication can come with a single ventricle.  But we will remain hopeful and grateful for those who dedicate their lives in researching this and giving our son the chance at life.

2 comments:

  1. There is a local heart mom that will customize a heart drawing of Logan's exact diagnosis if you are interested at www.heartbabyhome.com

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  2. Thanks for the updates! Glad Logan is doing better and you are settling into more of a normal life. He is so cute! We still pray for you guys and Logan!

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