Operation Hope: Panic begins to set in

Operation Hope: Panic begins to set in


I spoke with the Cleveland Clinic this morning and explained that we are basically beginning to panic because Gavin’s heart rate has slowed down yet.  He’s been sitting at a resting heart rate of 130+ bpm for almost a year now.

Recently, we have seen his heart rate, with very minimal activity hit 170 bpm. 

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While he seems asymptomatic, meaning he doesn’t seem to be have any adverse symptoms as a result, it’s definitely not a good thing. 

I also explained about what appears to be global regression and that honestly freaks me out. 

The nurse I spoke with is going to speak with the doctor and get back to me this afternoon.  She said that she understood why we were so concerned and that we weren’t making a big deal out of nothing.  That’s nice to hear that we are being taken seriously and I’m so grateful for the  Cleveland Clinic and the amazing staff.


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For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.

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