Monday, September 30, 2013

Decisions, decisions

Clearly it's not Sophie's choice ... but every time I leave Luke's most recent cardiology appointment, I feel myself shouldering more of a burden for the decision of when to do the Fontan, his next open-heart surgery. It's a decision that has no perfect answer. When you are talking about putting your child through major, major surgery, it would be really, really nice for someone to tell you, "Here you go. Here is the perfect plan for an optimal outcome."

But that's not where we are. And I'm pretty sure that's by God's design. Because if you are given the full picture, why would you need Him? I am overwhelmed by this verse today:

"Now if any of you lacks wisdom, he should ask God, who gives to everyone generously without a rebuke, and it will be given to him." —James 1:5

If it read, "Now if any of you lacks wisdom, raise your hand", you would see me flailing my arm high in the air. We see so little of the picture and yet we want so much for Luke to be his healthiest. That is why I am overwhelmed with gratitude that God promises He will give us wisdom when we ask. I read and ask questions and make myself crazy trying to decide (in myself) when the time is right for Luke to have the Fontan. There are so many variables. Here is just a snapshot of the list that swirls through my head at times:

  • Likely improved exercise tolerance
  • More normal oxygen saturations
  • Possible growth spurt
  • It's open heart surgery, including time on bypass.
  • Open heart surgery can mean a long hospital recovery
  • Lots of kids experience emotional trauma and behavioral regressions that last for weeks/months post-surgery
  • Research is pointing to long-term linkage between the Fontan circulation and liver damage.
  • The Fontan could fail and need to be taken down.
  • One of Luke's diaphragms is plicated (surgically stitched down) because it was paralyzed during his first surgery. There is some data that shows Fontan hemodynamics are not optimal with a plicated diaphragm.

So, what do you do? Part of me thinks, if the Fontan can give Luke any benefit, isn't it worth it? But then another part of me thinks, Luke is doing well; he is thriving in school, and we aren't seeing any negative impact to 85% oxygen saturations... Do you fix something that's not broken?

I told another heart mom the other day that one of my biggest fears is that we move forward with the Fontan, see a big difference in Luke, then wish we would have done it sooner. She told me in a gentle, loving way that that was crazy talk. We can only make the best decision with the information we are given.

We walked out of our cardiology appointment Wednesday with no more clarity as to when Luke will have the Fontan. Of course, our prominent emotion was gratitude. His echo showed fantastic heart function and squeeze and no narrowing in the aorta, where Dr. Stefanelli ballooned it three years ago. Many kids after an angioplasty need another before they are old enough for a stent. Thankfully, Luke's aorta has stayed wide open. Also, his sats were back up from June to 85% ... and with a stuffy nose to boot! He had grown an inch and gained a pound and a half since six months prior, which is good growth for him. Overall, everything looked good. Really good.

Dr. Kim wants us to come back in four months for a sat check and then six months for another full work-up. There was not even discussion about an upcoming surgery date. It was a "keep on keepin' on" conversation.

I don't have the answers. Dr. Kim doesn't have all the answers. What we have is a boy who is doing exceptionally well with the unique heart he was given and a God whose promise I will cling to:

He knows the future and He will give us direction as we need it.

That will have to be enough. We will keep on keepin' on, eating donuts and playing Wii boxing like our lives depended on it.

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