April 25, 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

An update on our busy little guy:

Holden’s cardiologist called us yesterday evening to say that the surgical team has concluded on their recommendation for surgery, based on the diagnostic heart catheterization done last week. We were a little surprised because we weren’t expecting an answer until Holden’s next cardiology appointment in April; (actually, we just didn’t know a timeline at all) however, we are glad to have heard back so quickly. Like, that type of glad in which your heart is racing and you are also terrified (this is Meghan typing).

So, there were 3 types of surgeries presented, one which was immediately thrown out (called “the double switch”) due to the fact that it’s better in theory than in the longevity of it working.

The other is the Glenn and Fontan, two surgery combo that the cardiologist had previously presented as a candidate.

Then, there’s the closing of the VSD and removal of the PA band (that was placed during the first surgery). This surgery would basically give him the diagnosis of someone with “Corrected Transposition of the Great Arteries.”

This is the one they highly recommend for Holden.

Closing the VSD (I posted a link to read below) would mean that Holden would only have to endure 1 more surgery, and would have a normal, healthy childhood. The hard part about this new diagnosis is that it is likely that when Holden is in his 30s to 40s he’ll develop congestive heart failure and eventually need a heart transplant.

The Glenn/Fontan combo, which is in the team’s back pocket just in case Holden’s body rejects the VSD closure, would have the same end result as an adult. One good thing, if you happen to look up info on the Glenn/Fontan, is that (if he ends up needing it) Holden’s body will do better over time with this surgery, than other kids who have it done.

So, this is our best bet. Like I’ve posted before, there is no cure for CHD. Each surgery is like a chess board– your first move effects the next.

For me, this is so hard to hear, because no recommendation will ever be acceptable to me until they say it will cure him forever. That’s something you can pray about for us.

However, as one of my friends said to me last night, how great will be Holden’s testimony? Although his physical heart can never be healed, Jesus has saved his heart from far worse than death. Furthermore, I’ve been thinking that we all are in need of a heart transplant (so-to-speak). I’m hesitant to write this on a public page, but it’s weighing on me to write it anyway. Without Jesus, the great physician, to come and do a circumcision on our hearts (or really just a full transplant– Jesus’ heart in place of ours), we are all destined towards death (Deuteronomy 10:16; Romans 2:28-29; & Romans 6:23). This thought, in some way, has given me some peace within the last 24+ hours.

We know that Holden’s not alone in having a heart issue, although in the physical sense, his prognosis is heart-breaking. Our hope and prayer is that his diagnosis will lead to the circumcision of many hearts.

That said, please pray for Holden and our family. Holden’s surgery will most likely be after his 1st birthday (April 15th). We’ll keep you updated on when it’s scheduled. We still have an emotionally rocky journey ahead. We still have to avoid serious illnesses, and then face surgery time again, which means a possibly long PICU stay again, which means our family is torn in two again, and Corbyn is basically without her mommy and brother for an extended period of time. That thought alone is incredibly taxing.

Thank you all for your continued interest and prayers for Holden. It really means so much.

Links on medical terms/procedures mentioned:

VSD: http://www.childrensheartclinic.org/DiagnosisIllustrations/VSD.pdf
Corrected Transposition of the Great Arteries: http://www.mottchildren.org/conditions-treatments/ped-heart/conditions/corrected-transposition-great-arteries
Glenn/Fontan: http://www.dhg.org.uk/information/procedures.aspx

Meghan

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