March 21, 2019
  • 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
  • 4:14 pm The Runner with the Broken Heart

Today we had a meeting with the surgical team about going forward with Holden’s next surgery. We were able to see a diagram of Holden’s heart based on the heart cath done back in February. Plus, we were given our two potential options of surgery.

The surgeons strongly feel that in order to have the best information on which surgery to be performed, they need to re-attempt the CT scan. When Dr. Gus said this, my heart dropped. My first thought, “over my dead body.” Which is what I’ve been saying since the incident, but now I’m not so sure.

Holden might have 2 choices of surgery, or he may just have the one. They won’t know until they’ve created a 3D model of his heart. Referring to the picture of the heart I posted, if you look between those 2 downward-facing tubes (the pulmonary artery and the aorta), there’s a little gray island. That may or not be muscle tissue between the two ventricles. The surgeons are hoping he has that piece of muscle tissue because, all other things considered too, that would mean they could do the double ventricle repair on Holden, and Holden could go on to live a long life– probably with a pacemaker in his middle age onward, but still healthy and full. That piece of tissue would allow them to close the giant hole between his two chambers, which is what I’ve previously posted about, the corrected transposition of the great arteries.

Without the CT scan giving them a better look his inner anatomy, the surgeons don’t feel comfortable performing the double ventricle, and so they would go the route of the Glenn/Fontan (Glenn now, and the Fontan later in the year or so). This route is the lesser (although easier) of the two surgeries because they know the longevity and the outcome of this one is grim. Holden might have a great childhood/adolescence, but the rest of his life, maybe not so much.

So they really want to give Holden his best shot life, and feel that automatically going the Glenn/Fontan route would be a cop-out. I should mention that they would approach the CT scan differently than last time, and feel that it will be way less risky.

This means that Dustin and I have a big decision to make and a lot of praying to do.

Tonight, as I was putting Holden to bed, the song “Because He Lives” came to mind. I sang it to Holden as I rocked him to sleep. The words are so fitting for us right now. I posted a picture of the lyrics in this post.

Please join us as we pray for the right decision to be made. We pray that God will make it so crystal clear.

Meghan

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