Daddy, Jaylen, Mason and Mommy flew to UNM to Mason's cardiology appointment. He was such a good little boy! He did everything he was asked, without hesitation. In the above photo he is getting an electrocardiogram and as you can see he was as happy as can be.
For those of us who have never experienced painful surgeries or spent much time in the hospital, it can be hard to comprehend why there would be any difficulty in such routine tests. It's often called the "blue" glove syndrome. (or purple as it was known at Stanford) After being through such painful experiences, these little ones are afraid of anyone wearing gloves. It's not just the white coats, it's the nurses, echo techs, radiologist, urologists, blood techs, etc that come around with those gloves. Once they're in sight, it can only mean another round of testing for one thing or another. The best part of having been away from those days is that Mason has completely let go of those fears.
As for his tests, everything looks as good as it can be. His echo shows his right ventricle working, while his left is a small, empty chamber; still and lifeless. His tricuspid regurgitation is about the same as it was before. He is 14.5 kilograms with socks! The goal is to reach 15 kilograms, as this is the magic number for which candidates for the Fontan need to arrive at.
Sometime next spring we will have to have his heart cath done. This evaluation will determine whether or not he is a good candidate for the Fontan. The Fontan will be the last of the staged surgeries and will connect the lower vena cava directly into the pulmonary arteries. This final stage will pump all his blood into his lungs first to pick up 02. The result should be that his oxygen saturations will increase.
For those of you who aren't aware, there is no fix for what he has. Once he is done with the Fontan the surgery, they will not have "fixed" anything. He will have a single ventricle working in his heart and blood flowing directly into his lungs first..this is nothing like us "normal" people. It is called a pallative repair-it allows him to live.
There is no guarantee he won't have another surgery or won't need a transplant at some point. In fact, the oldest survivors of these series of surgeries are in their twenties and there aren't a ton of them! Dr. Norwood pioneered the series in the 80's and each of these little patients present their own oddities. It is not a simple fix...but I guess there aren't many things in life that are simple. That's what makes us so interesting.
Ahh..the eighties..what a great time. I would have never imagined we would have such a beautiful boy that God has graciously entrusted us with. I wouldn't go back to save the world.........
