Wednesday, January 15, 2014


The Fontan conversation picked up again these past couple of weeks. Between our old cardiologist and us; between us as Luke's mom and dad; between us and God.

The last we talked with Dr. S, back in September after Luke's cardiology appointment, the "plan" was just to continue to hold off on this third stage surgery indefinitely. To continue to watch and wait for Luke to determine the timing. It was agreed that the risks didn't outweigh the benefits at this time.

There are benefits to finishing the Fontan circulation. No pediatric cardiologist would argue with the potential benefits. You are taking volume load off the heart, you are improving the child's cyanosis, often giving the patient near-normal oxygen saturations, and in most cases you are increasing the child's exercise tolerance. No one would argue with the fact that there are risks to this new circulation as well: The Fontan could fail, a patient could develop long-term complications such as Protein-Losing Enteropy (a nasty, nasty condition) or heart arrythmias, and most talked about right now, the potential damage to the liver with this new circulation. There are single ventricle patients in their 20's and 30's that have such severe cirrhosis of their liver that they require a heart and liver transplant.

So here's our impossible situation: The theoretical benefits to Luke, if all goes well, would be great. I'd love to see his exercise tolerance improve, and would love to not have to worry so much about his sats getting too low, especially when he's sick. The theoretical risks to Luke, if things don't go well and his body doesn't like his new circulation, are really really scary to a mama's heart.

That's a lot of theoretics. Dr. S. will be the first one to tell you: There is no easy answer. Luke's case is so tricky in the fact that he is seven, that his sats have stayed in the mid-80's, and his heart function and energy have stayed really good.

But you want to know what's not theoretical?

God's great love and good plan for our son.

In as much as we've been going around and around on this topic the last three weeks (which is good, by the way, and a necessary part of this process), we've had to stop and remind ourselves what God says, "If you need wisdom — (yes! over here!) — ask our generous God, and he will give it to you. He will not rebuke you for asking." —James 1:5

Or how about this promise? "Ask and it will be given to you ..."

God is not about making our path muddy, or our decision impossible. And He definitely doesn't want us to make this decision in our own limited knowledge. Yes, he has given us smart people to weigh in, and we're in the process of adding another smart brain from the Children's Hospital of Philadelphia to help us make this decision. But even Dr. Rychik's vast knowledge of all things Fontan is nothing compared to the wisdom of God. Nothing.

That is what we cling to as we walk forward through this situation that feels like has no right answer. It's scary because we want the best for Luke, but I tell myself a million times a day that God does too. Even more than me. Because His best is better than my best, any day of the week.