Explanation of Where the Aneurysm Is

I have read and read and read up on Ruby’s heart through her surgical records and all of her appointment notes and everything–there were over 100 pages I paid to be printed and I started them in a binder for her and myself. I think it will be good for her as she gets older and especially when she moves out to have her care organized and understand her heart better. It has been totally fascinating to read and I’ve loved to learn more and know her heart better. I also probably know more than I wish I did. For instance, her pulmonary valve, mitral valve, and tricuspid valve all have regurgitation. It’s mild but it’s also something that wasn’t there a few months after surgery. What that means down the road, only time will tell. But I do know it’s not the best thing to have, as it can cause her heart to work harder, to enlarge, etc. It can cause blockage, it can cause thickening of the walls. I know of course they are watching it, but I do feel it’s something that would have been worth mentioning to me. Dr. Jou was awesome but he wasn’t one for over explaining things. We have been assigned to Dr. Su and I’m excited since I’ve heard wonderful things about him. I might just tell him to pretend that we don’t know very much about her heart and to explain what we can expect in the future for her. Since arrythmias are quite common when they grow older, that is something I would have wanted explained to me, rather than have to read it somewhere, ya know? I have no idea what to expect from this aneurysm. So I hope he is a better fit for us!

My friend Kendra told me about an app called Heartpedia that they use for her heart baby Capri. It’s so good to look at and understand everything better. Below is a normal heart.

Here is a heart with TOF:

And here is the outside of the heart with the repair. See that labeled the Transannular patch? That is where the aneurysm is. It was patched (I called and confirmed this) with the pericardial patch, meaning that they saved part of her heart and patched this spot with her heart. And the patch is weakened so that is why there was the bulge on the x-ray. We were not told (neither of us remember and I never wrote it down on anything–I took pretty good notes during the whole surgery and recovery so I think I would have done it with this) that they widened her pulmonary artery. In fact, when Dr. Jou said he thought that was the portion where the aneurysm was, I said, “Wait a minute, I was told they left her pulmonary valve alone and they did no work there.” Well they did. Her pulmonary artery is narrow still, but they did widen it during surgery. So the RVOT patch, or the Right Ventricular Outflow Tract patch, is where they cut into her heart to widen the pulmonary artery. I still need to ask Dr. Su when we go next what they did to widen it and if anything was left in there to keep it like that. I don’t think there is but it’s something I couldn’t decipher from the surgical notes. Those things are so hard to read but I learned a lot as I looked up terms of things.

This is a normal heart:

This just shows the VSD, along with the right ventricle being thickened. Because Ruby’s hole was so large, they actually had to sew into the tricuspid valve to patch it. Because of the VSD, the right ventricle was also really thickened we were told.