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Keanu is getting his AED

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SheliRenee Find out more about SheliRenee
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  • #1

    Keanu is getting his AED

    Hi Everybody -

    After much searching (via numerous telephone calls), we finally found a pharmacy who was willing to help us get the AED that Keanu's doctor wants him to have. Since there doesn't appear to be many companies that are making the AEDs suitable for young children, we were limited on who we could go through. The ones that we did find all wanted us to pay for the device up front and then get reimbursed by Keanu's insurance. Well, there was no way that could have happened. We never have extra money (so much for our savings). Anyway, thanks to a wonderful lady named Jeannette, the AED has been ordered from Phillips and we should have it next week.

    SheliRenee
    Mom of Keanu
    4 years old (will be in March)
    Dx at 2 days old with Biventricular hypertrophy
    Dx at 6 weeks with HOCM
    Dx at 5 months with V-tach
    Dx at 3 with Noonan Syndrome
    Tags: None
  • #2
    Re: Keanu is getting his AED

    SheliRenee, Thank goodness for wonderful people like Jeannette. I'm so glad you will finally have the reassurance of the AED. May you never need to use it! Linda

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    • #3
      Re: Keanu is getting his AED

      I know this is a big step. It will take some gettin guse to having the device in the home. Who will be training you on its use?

      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

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      • #4
        Re: Keanu is getting his AED

        That will be my next step...finding somebody to do just that. Any suggestions?

        SheliRenee
        Mom of Keanu
        4 years old (will be in March)
        Dx at 2 days old with Biventricular hypertrophy
        Dx at 6 weeks with HOCM
        Dx at 5 months with V-tach
        Dx at 3 with Noonan Syndrome

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        • #5
          Re: Keanu is getting his AED

          SheliRenee, the training on AED's is now part of the AHA CPR course. Also, the company will give you specifics for their equipment. Ask to talk to the local sales representative. Then give us all feedback on your experience with training so we all know how to go about it for sure. Good luck! Linda

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