July 17, 2019
  • 11:37 pm Fall 2018 Pictures
  • 1:37 pm Halloween Photo Drop
  • 4:35 pm Heartiversary Celebration
  • 4:32 pm Fontan Clinical Studies
  • 4:18 pm Tomorrow is Holden’s Heartiversary

 

I guess it’s fitting on #worldheartday that I should update the masses on Holden’s upcoming surgery.

The surgeon called on Tuesday to let us know that the team has reviewed the 3D model of his heart. They feel that Holden is not a good candidate for the biventrical repair, therefore wanting to go the route of the Glenn and Fontan procedures. I’ll probably butcher the reasoning because I’m not a doctor, let alone a cardiologist, but what my understanding is that is one ventricle has too much muscle tissue, and so they are afraid that if they close the hole in between the two chambers, that the one side will not be able to pull it’s weight.

Since Tuesday we’ve been grieving this news because, although this next surgery should be short with a quick and easy recovery, in the long run Holden’s life expectancy shortens.

On October 24th (give or take Holden’s health– colds, congestion) Holden will undergo the Glenn procedure. The surgeon said that as long as everything goes well he could be home by the weekend. From there I’m guessing he’ll have a 6 week recover time for his wound site and sternum wires, meaning we’ll have to be careful as to how we pick him up or hold him, not lifting him by the arms or pulling his arms above his head.

After that we’ll be back to normal for awhile, and when Holden is between ages 3-5, he’ll receive the Fontan procedure. I’m not sure about the recovery time, but I think it’s more involved.

The seriousness and grief of this route for him is that most kids who have the Fontan experience heart failure in their 20’s, and by their 30’s need a heart transplant. This is where I want all of you to pray for major medical developments in heart repairs and even transplants. I have seen the side effects of extended use of rejection medication taken to protect the foreign organ in the body of the recipient.

This is where man-made “miracles” are imperfect and we see that only God is perfect. We can try to get as close to a perfect repair as we can, but we fall short. That said, I beg for your continued prayers that in 20 to 30 years Holden will be able to have a life-saving procedure that currently does not exist, and that he can go on to become a grandpa with a bad back, and balding head like any other grandpa out there.

Another hope that the surgeon gave us is that Holden has 2 decent-sized ventricles. The standard recipient of the Glenn and Fontan procedures only have 1 ventricle (thus being deemed a single ventricle repair). What that means for Holden is that he’s got extra pumping power for his body, which could buy him a few extra years, maybe even a decade, before his heart fails.

So friends, family, and prayer warriors, we ask that you pray for Holden’s cough to completely clear up and that he doesn’t pick up any new illnesses. Pray for Corbyn to not be our own special Typhoid Mary, bringing home microscopic friends from pre-school. Pray for Dustin and I to have peace from God and trust in Him who has given Holden life so far. Please pray for the medical team that will be working on Holden, that God will give them wisdom before and on surgery day.

On my birthday, September 17th, we were given the pleasure of dedicating Holden to God in front of the church and charging the church with the co-responsibility of caring for him. One of the verses we shared was this:

“and I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh. And I will put my spirit within you, and cause you to walk in my statutes and be careful to obey my rules.” -Ezekiel 36:26-27

This verse speaks to me because it reminds me that we all are in need of a heart transplant, and that we are created by the great designer of this universe, who wants to be involved in our lives, down to restoring our hearts of stone for a new one that serves a greater purpose. Holden has a great purpose in this life. What he will accomplish in his lifetime, I don’t know, but there is purpose to his life.

Meghan

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