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Post-Glenn, Pre-Fontan

What we hope to accomplish before the Fontan procedure, and what we're going to avoid.


Our heart warrior, Jack, is almost 2 1/2 and every bit of it. He's testing limits (both his and ours), exploring, investigating, and learning at lightning speed. Jack is mirroring our actions and has a thirst for learning how things work.

But we have noticed a shorter and shorter bank of energy for our kiddo. He races up the stairs and you can hear him panting. He plays all afternoon and wears himself out thoroughly. There are subtle signs that we are approaching his Fontan procedure.

 

The Fontan procedure is hopefully our final stop on the open-heart surgery line. The Fontan will complete the new circulation route from the body to the lungs, with the returning blood bypassing the heart altogether.

 

Jack's doctors have told us he is on track to have his Fontan in September, right at 3 years old. This leaves us about six whole months of figuring out what to do until then. With the pandemic still lingering, we have some extra limitations to consider.


Here are some things we are hoping to accomplish with our little warrior in the next 6 months:

  • Get up to speed on talking (he's a late talker)

  • Potty train

  • Visit indoor playrooms

  • Spend as much time outdoors as possible

  • Make friends/have play dates

  • Get rid of the pacifiers

Here are some things we will not be attempting:

  • Flight travel

  • High altitude trips (Denver, Adirondacks)

  • Day camps

  • Soccer

  • Preschool

Some of these may be a little ambitious, and we may fail during the Fontan recovery (namely potty training and pacifiers), but we hope we can at least move forward enough to where the Fontan won't seem like too many steps back in terms of social and occupational development.


For specific questions regarding the Glenn-Fontan time, please feel free to message me.

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