Aortopexy

Quick update. No pictures.

We went to see our general surgeon today. As always, I was composing my thank you letter to him in my head as I got KP ready to go to the appointment. Whenever he is doing particularly well with his dilations, I always compose this letter to our surgeon in my head with the hopes that he will tell us "well done" and decide to see us only as we see fit.

I planned to pack up all of the dilators and take them with us so that I could turn them into him. We were running late, so I didn't have a chance to pack them up. That should have been my first sign. As we were walking up to the doors, I was thinking about how I would laugh and tell the doctor about how I had meant to pack them all up, but left them at home, but I would drop them by later on in the week. You know, since we would not be seeing him again.

Not so fast.

KP did not burst into tears at the sight of him like he usually does. He did not like being checked (would you?), but he got over it quickly. The doctor was pleased with his progress and said that he could see a marked improvement over last month....

...but thinks that we should continue the dilations at the same frequency for a bit longer to make sure that the scar tissue does not reassert itself and begin closing things up again. :(

And then...

We scheduled an aortopexy for next week.

What is an aortopexy you ask? An aortopexy involves stitching KP's aorta to his sternum. Yes, ladies and gentlemen. We are stitching KP's aorta to his sternum.

Why would we do such a thing? The aorta is attached to the trachea, and by stitching it to KP's sternum, it allows it to create some space of its own that it does not have to share with the esophagus. The trachea does not like to share space, and this will give it some "breathing room". HA! I couldn't resist.

Anyhow. Happy Cinco de Mayo, folks. KP will be going in for surgery at 9am. We go in for pre-op on the 4th, and then surgery on the 5th. He will be going straight to the PICU. Our hopes are that he will be able to make it without a chest tube, but he is KP, so....

It is expected that he may remain in the hospital for a couple of days. Hopefully just one night in the PICU, and then on to the general floor. I'm actually okay with being discharged directly from the PICU, because I actually get some sanity when he is there, but I'm not sure that is in the cards either.

I know that I have been glib in this post, but you know how my defense mechanisms work, and right now they are at their highest. I am scared out of my mind about this procedure. Many of you know that I have been putting this exact procedure off since I first heard about it when he was 3 months old. We put him on a CPAP, we took out his tonsils and his adenoids, and nothing is helping. So, here we are. And this one is a doozy. Don't let me dance around this in such a way that I have not made that clear. This one is serious, folks. And I am scared.

For all of you that do, please continue to pray for us. We need it more than ever.

xoxo

Margot