The End of the Beginning?

Editor's note: I initially titled this post "The Beginning of the End?". After further reflection on what is coming and how I feel about it, I've concluded the current title is both more representative and more hopeful.

It has been almost 1.5 years since the last time Ayden was discharged from the hospital. There have been a lot of ups and downs since then. At times, despite all of us being home together, being Ayden's parents has been a huge emotional, physical, and mental challenge. Even when things have been at their most difficult, there was always solace to be found in the simple fact of not being in the hospital. Unfortunately, this Friday will bring a reminder that we still have (hopefully only) one more round to go. His pre-Fontan catheterization is that morning. (Ayden has had one of these pre-surgery caths before; see here and several of the subsequent posts.) This is the beginning of the process for his (hopefully) final surgery. It will tell us if he's ready for the Fontan. It's possible we could have a surgery date soon after the cath.

As you might imagine, I am of two minds about this looming return trip to the hospital. I am ready for this final stage to be over with, but I'm not ready for it to start. Like the second surgery, the final procedure is significantly less risky than was the first. Good news, right? Yes, but Ayden struggled mightily after the second surgery, while recovery from the first one was pretty much a breeze. Our understanding is children who have issues after the Glenn (surgery #2) tend to have to those same issues after the Fontan. Ayden was in the hospital for three months after the Glenn, so it's tough to not be fearful of what it will be like this time around.

If I'm correctly remembering what Dr. K told us when we first met her, the survival rate for the Fontan is about 95%. For heart surgery, that's clearly an awesome number. Even so, I have found it impossible to think about that number without also thinking about it's counterpart. There's no guarantee Ayden will avoid being one of the other 5%.

Objectively, I know the odds are overwhelmingly in his favor.

This is not a scenario that lends itself to objectivity.

For a while, I was doing a pretty good job of keeping the negative thoughts at bay. As Friday draws near, that task has become much more difficult. He's been at home for so long, it's hard to think of him being back in the hospital, lying on a bed, tubes and wires running everywhere. That's not the Ayden we know now. That's who he was before. It's sadly also who he will be again. We've been told the Fontan is the hardest on the parents. We've been told we'll feel as if we've handed over to the doctors a perfectly healthy Ayden and will feel like they've given us back a broken Ayden.

I don't even want to think about how much harder it will be on Ayden. The last time he was in the hospital, he couldn't even sit up. Now, he's on the verge of running. And he's going to be confined to a hospital bed?

At any rate, please keep Ayden in your prayers Friday and Saturday (he has to stay in the hospital overnight, though not in the PCCU like last time). I will post updates as the day progresses.