So there is something to be said for having the best possible team at the #1 cardiac hospital in the world looking out for our little boy. Let's call it...A Silver Lining.
Let me start by saying that this last year has been fantastic. It's the first time that I feel as we were more "healthy" than we were sick this year. A benefit that I thank Tucker's two amazing caretakers, his preschool teacher and daycare provider with whom both understand the importance of keeping him healthy and out of the hospital during flu season.
The anxiety always starts a few days before we go to clinic. We always seem a little off, as our minds are always preoccupied with the day of testing and always waiting for the bubble to burst on our "good run". Since this past fall Tucker's breathing has been more labored with minimal walking. So today at our appointment I asked about it. Tucker's oxygen saturation, post Fontan, has been higher (over 95) than they would like to see. He should be around the lower 90's. We have seen several episodes where Tucker just can't keep up or do what he use to, post Fontan. And this past fall, soccer was an absolute nightmare. He would run from one side of the field halfway to the other and then sit in the grass for 10 minutes, huffing. Although this might be his "normal", it is not what they like to see post Fontan.
After today's echo in clinic, we discussed with Dr. Porras what could possibly be happening. There are a few things that could be going on:
1.) Tucker's fenestration, a hole that was made during his last open heart surgery, is still open. They had thought that over this time that it would close on its own. It's still open and on the larger side than what they like to see.
2.) Dr. Porras also feels that Tucker's labored breathing could be a direct result of having what is called "collaterals", which are little tunnels of tissue that are formed when there is an increased blood flow to a specific area. (Think of an icecream cone shaped tunnel that starts to grow off of an existing artery or vein.). This ties up some of the blood flow and could be attributing to his labored breathing and his blue episodes during sports or gym class.
3.) This could also just be his "new" norm. Since he has a history of not being the textbook case of PAIVS (or Tricuspid Artresia).
The only way to know for sure what is going on is to go in via a cardiac catheterization and explore for collaterals and tie them off and hope that his numbers and breathing both improve. The risk with the catheterization is minimal, yet because nothing can ever be textbook with Tucker, there still are risks.
Tucker has had several cardiac catheterizations already, there is so much scar tissue in his arteries in both of his legs which makes them "blocked" and unable to use. They can go in via an artery in either an arm or at his neck, but since he is still so tiny, the risk of them also being blocked for the future is also high.
So after much discussion with Dr. Porras, Tucker will be scheduled for a cardiac catheterization this summer.
The highlight of our day was seeing a few of our favorite faces in The Center For Families.
