@AkronChildrens Hospital: Our home away from home

This week, I’ll be making 4 trips to Akron Children’s Hospital.  It’s only about a 30 minute drive on most days but I’ll be there 4 out of the 5 days this week. 

Monday, Gavin gets fitted for his Holter Monitor.

The actual appointment shouldn’t take very long because they are just attaching it to him.  However, he’ll be home from school….all day. 

He has to wear this for at least 24 hours and that will give his cardiovascular team a better idea of what is going on with his heart. 



When the monitoring is completed, most likely on Tuesday, I’ll drive the device back up to the heart center so that the results can be read before our appointment on Friday. This appointment will be to discuss what’s going on, bring them up to speed and find out the impact that this autonomic dysfunction is having on his heart, if any at all.

The most likely thing to come from this is additional heart meds or adjustments to the ones he’s already on. 

The reality is that his brain in the problem, not his heart.  We know that they can’t fix this.  However, we are trying to limit any collateral damage to his heart if alt all possible. 

The forth trip…….

We’ll, I can’t talk about that right now.  You’ll have to wait until Thursday evening to hear all about that.  It’s nothing bad, so please don’t worry. 

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  • moondustwriter says:

    well hang in there. I used to be a peds nurse at a children’s hospital and I know the stress that weighs on the parents
    you take care – please

  • Chefaimee says:

    Hopefully you’ll be able to get a better monitor than the one they gave me, it only held 15-20 ‘events’ before it was full, at which time it would begin beeping. I then had to ‘phone in’ the results; there was a speaker on the monitor and it had to be lined up with a speaker on the phone to transmit the data. Took about 10 minutes each time, and the damn thing screeched and screamed THE ENTIRE TIME it was transmitting. I was supposed to wear it for a month….. Yeah. That lasted about 5 days! It would literally fill up about 8 times a day, and I got so desperate for the noise to stop that I stuffed it under the couch cushions until my appointment. I hope you have better luck. Also, you should ask them for some adhesive remover packets – they are expensive as hell and work better to get the ick off from the leads on your skin.