Hoping Surgery is the Cure

 

 

Tyson is headed for surgery.

He’s not getting better and we’ve reached the point of last resort.

When his weekly cardiac check up showed no weight gain, the cardiologist looked at Brooke and said, “I think it is time to talk about surgery.”

Damn.

They’re presenting his case to the cardiac team on Tuesday and we should have something scheduled soon thereafter.

This is not the surgery to place a band on his artery and equalize blood flow. This is surgery to reconstruct his heart and fix his Double Outlet Right Ventricle, along with the other defects.

This is the operation he was to have at about six months, when he would be bigger and stronger. Doctors have determined his heart is working too hard and he won’t get bigger and stronger. Despite a high-calorie diet that calls for him to be force fed through a tube every three hours, he is not gaining weight.

The open-heart surgery, risky already, is riskier the smaller he is. We certainly hoped for him to gain weight so he would be in a better position to withstand the trauma.

That’s not to be.

Damn.

I’m depressed. This is not what I wanted for my son. I wanted him to have as much chance as possible and that meant delaying the surgery.

This is my little boy. This is life or death.  

But, I am a little relieved, too. Tyson has a miserable life. He struggles to eat, breathe and even stay awake. He pukes at least once and, most often, twice a day. If he’s not sleeping, he often is in some discomfort and pain.

Successful surgery could turn his life around.

I’m hoping for positive outcomes like this one: http://www.youtube.com/watch?feature=player_embedded&v=ersBIAjHM-w

That’s pretty amazing stuff. The shots of the open-heart surgery are incredible. It is pretty remarkable how close this family’s circumstances mirror ours, and the baby’s condition is similar to Tyson’s.

I pray we have the same results.

If you want to know specifically about Tyson’s condition, here are details from an earlier post: http://firsttimedadat45.blogspot.com/2013/03/talking-specifics-about-my-boys-heart.html

There will be a long road to recovery even if the surgery goes well, including the prospect of more operations and the weekly cardiac visits. I don’t know when he’ll hit the “normal” stage.

But that is where we ache for him to be. I have had trouble truly bonding with Tyson because his condition has made him constantly miserable and I’ve become so frustrated at my inability to do anything that makes him feel better.

I love this kid. I want life to be easier for him. I want to see him really smile for the first time.

One doctor told us he will be “a totally different baby” after the surgery.

Amen.