This is Real, This is Happening

We knew the Fontan was coming. We knew it was coming from day one but it seemed so far, far away. A successful Glenn Procedure gave us some room to breathe, to create memories, to move on a little bit. But here we are…Nolan’s Fontan Procedure was originally scheduled for late March, but since they had to do some ballooning during his cath, that date was postponed. Since Nolan didn’t need to have the surgery immediately, we chose to wait until school was out for all the kiddos. On May 5th we sat down with his surgeon, Dr. Maxey, to finally talk about the Fontan.

But before we get into the meeting, a little background. When we started this journey with Nolan, we were introduced to his surgical team: Dr. Maxey and Dr. Peeler, who was the Chief Pediatric Heart Surgeon. Last year Dr. Peeler announced he was leaving his position for a similar one at another hospital. Of course, this was a shock to everyone. Eventually, though, Levine Children’s Hospital hired Dr. Paul Kirshbom from Yale. Really awesome guy: I was lucky to meet him a few weeks ago. I know he’s going to take this program to great places. Some parents, understandably, were very nervous about Dr. Peeler leaving. What about us?

Dr. Peeler did a fantastic job on Nolan’s Norwood Procedure (with Dr. Maxey), but if you recall from this blog you’ll know that Dr. Peeler wasn’t available to do Nolan’s Glenn Procedure and it was done by Dr. Maxey, so we had some experience with Dr. Maxey getting the job done in awesome fashion. So for me, having Dr. Maxey do Nolan’s Fontan Procedure didn’t make me so nervous. I mean, I’m still nervous…but you get my drift.

So anyway, here we were sitting down with Dr. Maxey talking about our little man. He walked through what the surgery would entail (I’ll post details about it soon), and laid out all the facts for us. He said Nolan is a great candidate for his Fontan and he feels very confident about it. So if he’s confident, then I need to be confident: in him, his team, the nurses, the CNAs, the housekeepers, the food service people, etc. It’s a total package. If they’ve got my son’s back, then I’ve got theirs. Before we left we had Nolan scheduled for his Fontan Procedure on Monday, June 6th.

Don’t get me wrong, though, this is still stressful, heavy stuff. For some reason, I feel much better about a June surgery date than the late March one. I can’t explain why, but that date was totally freaking me out. Many of you read this blog because it is helping you along the journey: I’ve been happy to share our experiences with Nolan through his Norwood and Glenn. But this is new territory: this is an unknown and honestly I’m not sure if we’re ready for it. There’s no way. We’ll be bringing our son – now a toddler – in for another surgery. There will be fear, pain, and tears. And I wish, as I do very often, that he didn’t have to go through this. Or that he would wake up tomorrow with a whole heart. Sigh.

But this is real, and this is happening…and dates on the calendar keep moving along, and there’s nothing I can do to stop it. In the meantime we hope, we pray, we laugh, we have fun, we continue to make memories. I sing the ABCs with Nolan (sometimes non-stop), I tickle his neck, I encourage him to dance to fun music, and I keep telling him how awesome he is and how much I love him. As June 6th rapidly approaches, we would appreciate everyone’s prayers and kind thoughts! Thanks for being awesome, readers, because of you I know we have friends around the world and we can do this with your help!

Advertisements

About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on May 23, 2016, in preparing for surgery and tagged , , , , , . Bookmark the permalink. 2 Comments.

  1. I’m with you, Chris, Nolan and family! Sending all my love and prayers. Go, Nolan!!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: