Nolan’s Cardiology Check-Up

Some weeks ago, Nolan had his regularly scheduled Cardiology appointment, which occurs every 6 months or so.  For the last several visits these have gone very well and since I work really close to the Cardiology office, I can pop right in and be part of the visit then go right back to work.

This appointment, however, was giving me a tiny bit of anxiety.  Ok, not a tiny bit but not a huge amount.  Why?  For some reason I had it in my head that we were going to go in there and they were going to start talking about the F-Word…the Fontan procedure: the next – and hopefully final – step in his surgery plan.  Was I read to talk Fontan?  Heeeeck no, I wasn’t ready for none of that mess.  I think part of that anxiety was due to seeing several people’s HLHS kids get the Fontan at about 2 1/2 years old as opposed to 3.

You see, Nolan is still a little guy: he is struggling to get to 24 pounds, and I was scared to death to even think another surgery because he was still so small and it made me scared to think we’d have to hand him over, again; they would cut him open. again; and then we’d wait…again.  Normally I try my best to take everything in stride but for a little while this was driving me bonkers.  I was terrified to hear the F-word during this appointment and it was like I got into my own head about it.

When the day finally came for Nolan’s appointment, I stepped out of a meeting I was in and walked over to the Cardiology office.  That whole morning I was preparing myself.  When I got there, I saw my wife holding Nolan, who had his shirt off and had obviously been crying very hard.  My wife said that as soon as he saw the rooms in the back, he went nuts and wouldn’t stop crying and wouldn’t sit still for an EKG or a pulse ox reading.  Woo boy.

(Side note: Heart Parents, I know our kids go to so many doctors and this is why they go nuts and cry…it’s not the Dr’s fault, but what have you done to ease that anxiety in your kids?  Please share because I know it’s not just us!)

So I picked my my crying little beast and we walked in to do an Echo.  Nolan was not having it, so I had to hold him and put on Yo Gabba Gabba on my phone so he could remotely relax enough to get a decent Echo done.  At first he was going nuts and I thought I was gonna come out of there covered in that ultrasound goop.  But MAJOR kudos to the tech, who still managed to get good pictures.  And to help things along, Nolan’s Dr was in an adjoining room watching the Echo as it was being done so he met with us quickly and said Nolan’s heart function looked great and that they wouldn’t have to see us for quite awhile and we wouldn’t begin to have the surgery conversation until next spring.

Next spring?

Now I know that you’re thinking: “Chris, you’re gonna worry yourself all the way til then?”  Well I hate to burst your bubble, but no.  I’m not.  That news actually made me very happy.  I was glad to hear his little heart is doing well and that we still have some more time to focus on feeding, weight gain, physical therapy, more laughter, another Christmas, etc., before worrying about surgery.  It’s a nice feeling.  I know the surgery is inevitable and I’m sure the anxiety will return as we get closer to that time.  But it was good to get our little man dressed as he watched Yo Gabba Gabba, and to focus on getting back to our little life as we know it.  I’m so glad to know he’s doing really well so far, I’m proud of him:

NolanCardioAppt

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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 31, 2015, in check-ups and tagged , , , , , , . Bookmark the permalink. 3 Comments.

  1. My little guy is turning 3 in October and we are doing his Fontan in July. He is also struggling a lot to gain weight- I don’t think he’s gained anything in about 9 months because of the winter colds/sickness. I’m actually looking forward to getting this surgery done and out of the way just so we don’t have to think about it anymore. And then we can focus on helping him gain weight this winter. I’m glad you and your doctor are on the same page about waiting though!

  2. Mark Crowell

    My son, Jack, was born in November of 2012 with HLHS. He will have his Fontan in about a month at LeBonheur Children’s Hospital in Memphis.

    I just discovered your blog. We are actually planning to move to Charlotte soon for my job. Maybe we can visit at a Starbucks or something and share stories. Thanks for the inspiration.

    Mark Crowell – Jack’s Dad

    • Hi Mark! I hope all goes well with Jack’s fontan…please be sure to keep me posted on his progress. When you guys come to Charlotte let me know, we can definitely meet up and share war stories

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