A lot of people have asked about how Kai did this week, so I want to give a quick (relatively speaking, of course!) medical update. However, so not to only focus on his medical condition, I also want to give some update on how he's doing in general.
Ok, first the medical side of things...
Kai is diagnosed with multiple heart and pulmonary defects. The primary defects that we are concerned about immediately are the hypoplastic right heart syndrome/pulmonary atresia. This means that his right ventricle is non-functioning (the dr described it as a small muscular mass, not a chamber as it should be), his tricuspid valve is too underdeveloped to function, and he is completely missing his pulmonary valve. Because of these heart defects, Kai was having pressure issues in his right atrium. This was causing residual problems with his left atrium and his liver. His procedures Monday were to help alleviate this. Fortunately, the procedures went well and he was such a tough kid! He has had some complications from the procedure, but he is doing well now. We think these pressure issues are resolved and should be "good to go"!
Kai is diagnosed with multiple heart and pulmonary defects. The primary defects that we are concerned about immediately are the hypoplastic right heart syndrome/pulmonary atresia. This means that his right ventricle is non-functioning (the dr described it as a small muscular mass, not a chamber as it should be), his tricuspid valve is too underdeveloped to function, and he is completely missing his pulmonary valve. Because of these heart defects, Kai was having pressure issues in his right atrium. This was causing residual problems with his left atrium and his liver. His procedures Monday were to help alleviate this. Fortunately, the procedures went well and he was such a tough kid! He has had some complications from the procedure, but he is doing well now. We think these pressure issues are resolved and should be "good to go"!
Our medical plan was to take care of these pressure issues and then schedule his final open heart surgery. But...we found some other issues that we were not aware of and definitely were not planning on. As we met with the surgeon, he showed us pictures of Kai's heart...and told us that our medical/surgical plan will now need to change.
Kai's pulmonary artery, which has the job of carrying deoxygenated from the heart to the lungs, has a fairly large "kink" in it. Here is what it a normal heart looks like:
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Here is what Kai's pulmonary artery looks like:
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Do you see the difference in the pulmonary arteries?! These are supposed to be straight tubes, not bent in half. With having pulmonary atresia, his little heart already has a tough time getting deoxygenated blood to his lungs. This makes it even trickier! We also found out that he has coronary artery fistulae. Coronary artery fistulae is a congenital condition where the coronary artery abnormally attaches to another blood vessel or heart chamber. Because all of this wasn't enough, we also found out that, because of the combination of Kai's heart defects, his red and blue blood does not have a way to mix. So, the surgeons need to remove part of his atrial wall. Essentially, they will be creating an atrial septal defect (ASD), which is a congenital heart defect where there is a hole between the right and left atrium. Here is what a ASD looks like. The location with labeled with the number 4 is where a hole will be created.
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In a normal heart, this would need to be repaired. But, because of how his heart functions, Kai needs this defect....so because of his heart defects, surgeons are going to create another heart defect! Can you see why my head is spinning?!
In a normal heart, this would need to be repaired. But, because of how his heart functions, Kai needs this defect....so because of his heart defects, surgeons are going to create another heart defect! Can you see why my head is spinning?!
All of this means that we are looking at more surgeries than we expected. His first open heart surgery will be to make the repairs mentioned above. The following surgery will be the more major procedure. It will be to bypass the entire right chambers of his heart.
I know we have a long road ahead of us...but this kiddo is such an inspiration. We've been told on a few occasions that it is a miracle that he is alive. Kiddos with this number of defects and the degree of severity of his defects typically don't survive. Not only is he alive, but he is living...really living!
Here is just a small sample of pictures and videos that show who he is. He is so much more than his heart defects!
Can you tell that he enjoys singing?! He also loves hiking, making puzzles, praying, Sam, dogs... and he has an abnormal obsession with broccoli! Here are just a few pictures of this boy who is full of life!
I know we have a long road ahead of us...but this kiddo is such an inspiration. We've been told on a few occasions that it is a miracle that he is alive. Kiddos with this number of defects and the degree of severity of his defects typically don't survive. Not only is he alive, but he is living...really living!
Here is just a small sample of pictures and videos that show who he is. He is so much more than his heart defects!
He LOVES to sing:
He LOVES to sing about Jesus:
He LOVES to sing with his brother:
Can you tell that he enjoys singing?! He also loves hiking, making puzzles, praying, Sam, dogs... and he has an abnormal obsession with broccoli! Here are just a few pictures of this boy who is full of life!
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