Operation Hope: Enter the Holter Monitor

Gavin’s cardiologist from Akron Children’s Hospital, personally called this morning to discuss our concerns about Gavin current heart rate issues.

I explained what was going on and what I was worried about. 

Part of my concern is the fact that his resting heart rate has been so high for so long. 

For right now, he isn’t so much concerned about the numbers because Gavin is so young. However, we do need to closely follow him and make sure that nothing else develops as a result. 



This might sound like this isn’t a big deal. 

The reason for that is because this isn’t actually a problem with Gavin’s heart itself.  The problem is in Gavin’s brain and the way in which it’s controlling the heart.

The concern arises when we look at the wear and tear this may be having on his system. 

You may also remember that Gavin’s biological father’s side of the family has a history of aortic tears at a really young age.  Until all this stuff began happening with Gavin’s health, about two years ago, he was supposed to be checked every year.

We need to go back anyway but if nothing else, at least we can get a better idea of when and when not to worry.

With that said, on Monday morning Gavin will be at the  Akron Children’s Hospital’s heart center being fitted for a Holster Monitor.

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This will record his heart rate for a 24 hour period of time and give them a better idea of what is happening. 

I would imagine that they would want to have him do normal things, in order to get an accurate picture of what is actually happening. 

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After 24 hours, we return the device and then see the doctor a few days later on Friday.

Hopefully, they have the results ready and we can figure out whether or not we need to be worried. 

Does that make sense?

It’s important to remember that this is looking not at the cause necessarily but instead the overall impact his elevated heart rate may be having on his body.

We already know the reasons behind the problem and we also know that there is nothing we can do to fix it. 

What we are trying to establish is guidelines for his heart.  We want to know when we need to worry about his heart rate and when not to be worried about.

Right now we have guidelines in place for the autonomic crises in general but should there be guidelines for both? Hopefully, we will have those answers after next Friday.  Maybe we don’t need to worry so much about how this is affecting his heart physically. 

The outcome is the same at this point regardless.

The crashing is caused by his brain and his heart is just the messenger, if that makes sense. 


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  • DKS3 says:

    I am guessing he is very aware of what is going on correct?  I wonder if his own anxiety regarding his own heart rate could be adding to the heart rate issue.  I use to (and still do) suffer from anxiety.  I had to train myself to ignore my heartrate because i after much worry, test after test, and the holster….it turns out I had a valve prolapse…..all the symptoms were in my head.  The valve issue i have in benign.

    • lostandtired says:

      DKS3 actually he doesn’t really know too much about what’s going on.  He doesn’t think about it, at least as far as I know.  We always have to remind him about these things.  
      He doesn’t understand and so isn’t worried about too much.  That’s a good point and something that we are trying to keep an eye on.  🙂

  • hudginsvicky says:

    My heart breaks for Gavin. He has had so many difficulties in his young life — it truly isn’t fair. I know it’s very hard on all of you having him home again, but you are the best thing for him. You are the perfect dad for Gavin because you never stop trying to improve his quality of life, and saving his life. You’re in my prayers Rob, as always.