I’ve Been Avoiding This

Carson had his cath on May 31st. It went well, he handled it really well but the news it gave us is not anything we were expecting.

Ever since Carson was diagnosed all of the doctors would always comment on how lucky he is to have two solid ventricles.  That it was just a matter of time to get him big enough to be able to have his “full repair” that would give him a normal functioning heart.

Once again, Carson is writing his own story, and making his own rules.

He is not a candidate for the “bi-vent” repair that was planned. When they do the bi-vent they put artificial conduit in his heart to create a pulmonary artery, then they would patch his VSD (or hole between his ventricles) and reverse the Glenn. Apparently his original pulmonary artery (which they used to build him an aorta) is not in an ideal place and would make it too difficult and risky to patch his heart how they would need to. Another thing that is against him is that his, prior HUGE VSD is now starting to close on its own and that causes more challenges in doing the Bi-Vent repair. So Carson’s surgeon thinks the Fontan is the best route to go for him.

Here is a lesson in anatomy. Blood from the body (unoxygenated) usually goes to the right side of the heart, out to the lungs (becomes oxygenated) back into the left side of the heart and out through the aorta to the body.

When Carson had his Glenn (his second surgery) they re-routed the blood that drains from above his heart to go straight to the lungs instead. This causes that blood to get 100% oxygenated since it isnt mixing in his heart first. Because babies body proportions are different than adults this works for them for a 2-3 years. Most kids who get Glenn’s get the third surgery in the series of Norwood, Glenn, and then the Fontan. What the Fontan will do is it will take the blood from the lower half of the body and re-route it to the lungs first so that it gets 100% oxygenation before going to the heart.

This is great, we want his oxygen levels as high as possible. However, the heart was not built for these kind of pressures. The left side and right side of the heart are very different. They are created to do very different things. The right side is for low oxygen levels, and the left is for 100% oxygenation. What this means is eventually his heart can grow tired. Eventually he can be placed on a transplant list.

The series of Norwood, Glenn, and Fontan are not that old. The oldest “Fontan patients” are in their 30’s or 40’s. Im not super educated in the Fontan because I never ever thought Carson would have that surgery instead. Its hard to swallow. A bi-vent would give him a normal functioning heart. It would give him a better life expectancy.

This series of surgeries was originally created for kids with the diagnosis of Hypoplastic Left Heart Syndrome or HLHS. Basically this means that a kid diagnosed with HLHS only has half of their heart.

Boston is the #1 Children’s Hospital, they also happen to be the #1 hospital in children’s cardiac care. Boston is taking kids who are born with very small left ventricles and they are rehabilitating them, making them grow, and then they are doing Bi-Vent repairs on these kids, who were only born with half a heart, and giving them a shot at living a full life.

I’ve always fought for Carson and I wont stop. I sent Carson’s information to Boston to get their opinion on his third surgery. I want him to have a fullest life possible. The Fontan is not a death sentence. The Fontan has allowed kids to live normally, and without it many kids would not be here today. I just need to know that the best of the best either thinks the Fontan is best as well, or even better thinks the Bi-Vent is indeed possible.

Being a heart mom means rolling with the punches. I feel like I got sucker punched. But Im back on my feet, and Im coming out swinging. I’m getting more educated, and Ill never give up.

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