Heart Parent Panel

This past Saturday I got a great opportunity to participate in the 4th Annual Camp Luck Parent Education Symposium.  Camp Luck is a medically supervised camp for children with heart problems and their families.  They do an incredible job in connecting heart families together and supporting them throughout this journey. 


While Nolan won’t be old enough to attend Camp Luck for awhile, I still wanted to be a part of the family interaction.  And the Symposium, which was held at Levine Children’s Hospital, was pretty awesome.  I learned lots of cool stuff about Camp Luck and things they’re trying to do for the future – including BabyLUCK – which will do great things for kids Nolan’s age and younger.  There was quite a bit of heart siblings there and they were AMAZING (I’ll blog about that another time) and lots of cool info sessions.  I got to take a tour of the cath lab and learn about all they can do there…def interesting.  Then the curveball came in…

So Nolan has been having a rough few weeks: it started with a double ear infection, then a stomach bug…and he hadn’t been quite back to normal since and my wife texted me that his o2 sats were lower than usual (low to mid-70s) and that he was VERY fussy.  I had her call the on-call cardiologist, Dr Cook, who instructed her to bring Nolan into the ER just to give him a look-over.  So once Bekah arrived with Nolan, I excused myself from the Symposium and walked over to the ER.  Luckily I was right there.  Dr. Cook did an awesome job of notifying the ER that we were coming, so everything went pretty smoothly.  Long story short, Nolan got admitted and has ANOTHER ear infection and fever, which caused the low sats.  They kept him due to the low sats. As of this writing, he’s on room air and getting antibiotics and should HOPEFULLY go home today.  Now back to our regularly scheduled programming…

After Nolan got settled, I went back to the Symposium because I was asked to speak on the Heart Parent Panel, which was a big time honor for me.  There are so many parents out there with WAY more experience and knowledge than me, so I treated it as an opportunity to learn and share my experience with Nolan.

That’s me, 2nd from the right

We had some really good discussion about our kids and some of the difficulties we may have surrounding our expectations for them.  I loved being able to hear different perspectives and interact with the other parents both on the panel and in the audience. 

When I agreed to serve on the panel, I was given a list of questions that may be asked during the discussion.  We didn’t get to some of them due to time constraints, so I wanted to put them up on here with my answers and hopefully allow other parents to chime in on our comments section:

1. All heart parents worry, but where do you turn when the worry feels overwhelming?

I tell a lot of people that a good support system is key to avoiding losing your ever loving mind during this CHD journey.  Seriously.  Find a good support system.  For me, that is my faith, my church friends (we meet weekly), this blog, other heart parents, my wife, and sometimes even our chaplains at work.  A diverse support system is great because it helps you when you just need to approach your worry or concern from a different angle: sometimes I can say a prayer and feel fine; other times I need to write it down or just plain vent to someone.  We’re not on an island: there are other people going through struggles and are willing to walk with you through them.

2. Are you the type of parent who handles your child’s CHD by trusting what the cardiologist tells you, or do you need to understand their CHD inside and out?

I’d say a little bit of both.  The fact is these cardiologists don’t get their knowledge off craigslist: they work hard to learn their field and their trade.  They know their stuff.  And while I am no medical expert and certain things are just over my head, I think it’s foolish not to at least try to familiarize yourself with your child’s condition.  The cardio team isn’t there with your child the whole time, you are…

3. How do you deal with the anxiety you feel before your child’s doctor appointments, etc.?

I think this changes with time and type of appointment.  Early on in this blog I talked about how utterly TERRIFIED I was before Nolan went for the Norwood Procedure.  Heck, it still freaks me out sometimes just thinking back on it.  Surprisingly I wasn’t too worried for his first cath and I was a tiny bit worried before his Glenn Procedure.  Either way, whether you completely melt down before each appointment or you’re stoic, this is where your support system comes in.  Tell people what’s coming so they can talk with you, check up on you, and give you an opportunity to voice your anxieties.  Usually I’m working when Nolan has 99% of his appointments, but in January I got to go to a cardiology appointment with him and while I was confident that everything was fine, there’s still that sliver of anxiety that always exists in the very recesses of my mind.  It’s like “Ok ok ok ok ok don’t find anything new, please nothing new, pleasepleasepleaseplease!”

4. When your child has been hospitalized, are there any special items you bring to make the hospital seem more “home-like” and comfortable?

For Nolan we try to bring a few toys or stuffed animals.  The hospital does a great job of providing toys if we ask for them, but I also like to give him familiar stuff as well.  One thing I try NEVER to forget is his little sound machine: he has this giraffe that plays different types of white noise and that’s what he sleeps with every night.

5. How do you deal with well-meaning family and friends who want to help in some way?

Oh people…what are we gonna do with them, right?  The average friend/family member, no matter how well-meaning, doesn’t quite understand the complexities of having a heart baby.  They demand to be around for everything, they want to be over all the time, or be all up in your bidness.  Parents, however, are the ultimate gatekeeper, and you need to put your foot down and set boundaries: not just for your child’s health but your own mental health.  People will nag and whine and moan, but they’ll get over it.  Sometimes you want to keep the germs away and you don’t want Aunt Pookie and her 14 boogery kids coming over and snotting up your house…so you can play nice and say, “Right now we’re keeping visitors to a minimum to avoid illness.  I’ll let you know when is a good time.”  OR you can give people options: if people offer a meal, let them bring it and (key) drop it off and leave.  Or they can make phone calls or skype or whatever.  You can set the boundaries. And people have to respect those boundaries.  And if they don’t like it, too bad.

6. Your children are all different ages, but how did you answer their questions about their CHD, while not creating undue anxiety?

This one doesn’t directly apply to me, but I’d love to see readers’ input on this.  How did you explain it to your kids when they are old enough?  Our oldest son is 3 and we tell him Nolan has a “boo-boo heart” and he understands this simple concept, which we can expand on as he gets older.  Dr. Herlong – one of the cardiologists at the symposium – made a great point that parents NEED to teach their kids about their CHD, so they know how to pronounce it, know what it is, and will eventually become grown up, independent patients.

7. Do you emotionally cope with your child’s CHD the same way your partner does? If not, does this create tension or add a different perspective?

The answer to this is the reason I write this blog: guys are just different.  There are things associated with Nolan’s CHD that I feel like we can all push through together.  Sometimes it just leaves me feeling deflated.  I want him to walk, and eat by mouth, and not have to struggle with feeds or a cleft palate.  I do.  Somedays I’m super-duper confident dad because I want to tell him “You can do this, I know you can!” and some days it’s like “What NOW?!”  you just wanna put your head through a wall.  I will say that my wife and I make a great team.  And that’s what it takes to win: teamwork. 


So let’s hear your answers to some of these questions in the comments section, I’d love to read your opinions!  I had a really fun time at the Symposium, even though I missed some of it.  I learned a lot about the cath lab, helping kids through anxiety, and even the care provided to CHD kids once they grow into adulthood.  I’m looking forward to the next Symposium and continuing to be involved with Camp Luck!  To read more about Camp Luck, check out their website: http://www.campluck.com/ 

Oh yeah, and one more thing: I did run into a couple people there who have read this blog and you have no idea how exciting that is for me.  It makes me feel like all this is worth it, so A BIG SHOUT OUT TO ALL MY READERS!


About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.

Posted on March 3, 2014, in awareness and tagged , , , , . Bookmark the permalink. Leave a comment.

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