Saturday, April 18, 2009

Surgery Consult

Yesterday, we had our consultation with Dr. Jonas, Harlie's heart surgeon. I'm afraid that there's no way I can explain properly what's going on and what's going to happen. I would need pictures.

Basically, the subaortic stenosis must be corrected, or alleviated in some way. This obstruction is tissue that has grown over the entrance to her aorta and is making it difficult for blood to leave her heart to go to her body.

The cath doc told us that the surgeon would most likely cut away the tissue that was causing the obstruction, and that it could grow back in time.

When we spoke with her surgeon, he had a different plan. Instead of removing the obstruction, he is going to create a whole new path for the blood to leave her heart and get to the aorta to go to her body.

With her main heart defect (cc-TGA), the electric rhythms of her heart can be unstable. And a huge risk with cutting the obstruction away would be that it could damage her electric connection between the ventricles and atrium, making her pacemaker dependant. This we clearly do not want to do. It is one thing to have a pacemaker that helps your heart beat on occasion, another thing entirely to have the pacemaker telling your heart to beat all the time. And it is possible that the obstruction would just grow back, and that would mean another open heart surgery.

So, his first preference to fix the problem is to create a whole new connection from her left ventricle to her aorta (to give the blood another way out). That procedure is called the Damus-Kaye-Stansel procedure or DKS. He will use donated human tissue to make the passage way (thanks to all those wonderful people who donate their organs!) If that isn't available then he will have to use Gore-Tex. Real tissue is so much better because it closes up better around needle holes. Nice thought, huh?

I have to admit that I am not happy about this obstruction and the extra procedure he has to do. And I will be even more unhappy if he can't do the DKS for some reason. I really don't want her to be pacemaker dependant.

While signing the consent form for the surgery, he told us that a normal Fontan operation is a fairly routine surgery (it is one of his most common surgical procedures) but that adding the DKS makes it complicated. He said that the normal risk of brain damage or death is about 3%, but by adding the DKS, and the fact that Harlie has more issues, it is slightly higher than that - closer to 5%. Before Harlie came along, numbers brought me comfort. You have to go with the odds. But, prenatally, Harlie was given a 5% chance of living, and she did - so I don't consider 5% that small anymore.

He did give me a glimmer of hope that maybe she won't develop a chylothorax (like she did after her 2nd heart surgery, the Glenn). If you click on chylothorax, it will take you to one of my blog entries where I explain what it is - just scroll down a ways and you'll see it. Hopefully, relieving the pressure from obstruction below her aorta will lessen the chances of it happening. If it does not happen, then we could potentially be home in 2 weeks!


Kim said...

You're not kidding - never, ever a dull moment. I'm glad Jonas came up with a revised plan that sounds to be more effective in the long run.

Thinking of all of you, praying for great results Monday.

Paige stevens buchbinder said...

WOW! That little fighter has beaten some tough odds and I have faith she will fight threw this one. You are always in my thoughts but you will be more on Monday. Hugs!

Ann said...

Christy, I imagine at times you must feel like you can't breathe given all the information you've had to take in lately. That IS a lot to handle and you do it well - with grace and humor. You and Harlie will definitely be in my thoughts and prayers over the next few weeks.

Much love,

Sandy said...

Harlie is a strong little girl (just like her mother). I know you will be glad when this one is over. You are in our thoughts constantly. Let us know if you need anything.