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Dylan's Myectomy scheduled

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Dee Find out more about Dee
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  • Dylan's Myectomy scheduled

    We've finally made the decision to stay at Milwaukee Children's and have Dr. Tweddell perform Dylan's myectomy. He's scheduled for it on the 19th. Dylan's father and I both feel confident we've made the right decision. Now, we're just working on preparing Dylan. Dr. Tweddell will be repairing a perforation in his mitral valve as well as the myectomy.

    I sure do appreciate all the information and support that all of have so freely given. You guys truly rock!
    Dee, Mom to Dylan
    (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

  • #2
    Re: Dylan's Myectomy scheduled

    Dee,

    I just want you to know that you, Dylan, and your entire family as well as the doctor will be in my thoughts and prayers!

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: Dylan's Myectomy scheduled

      Iwill keep all of you in my thoughts and prayers. Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

      Comment


      • #4
        Re: Dylan's Myectomy scheduled

        Best wishes for an "uneventful' procedure. I hope all goes well. Are you seeking a 2nd opnion from a speciality center or moving ahead with your center?

        There are MANY out here who can offer 1st hand advise as to what to expect, I hope it is all helpful.

        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)

        Comment


        • #5
          Re: Dylan's Myectomy scheduled

          Dee, We'll be thinking of you all and praying too. Dylan's picture is so charming! Please take care of yourself also and keep us posted. Linda

          Comment


          • #6
            Re: Dylan's Myectomy scheduled

            warm thoughts are sent your way
            Jen

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            • #7
              Re: Dylan's Myectomy scheduled

              Dee,

              I will be thinking of you all and praying everything goes well for Dylan! Will you have access to a computer during that time? Many of us will be waiting, waiting, waiting for news! If not, then we will just have to wait until you are home! Having been through it already with a 6 year-old I know how emotionally draining it will be on you and your husband, so I am praying for your strength as well.

              My MANY best wishes and prayers!
              Dolly~
              mom to Andrew(HCM) 21 years old
              Diagnosed \'95 age 5
              Myectomy \'96 age 6
              ICD implant \'99 age 9
              First ICD shock (X2) \'04
              ICD replacement surgery \'05 age 15

              *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

              Comment


              • #8
                Re: Dylan's Myectomy scheduled

                Dee,

                We'll be thinking of you here. I hope that everything goes as smoothly as possible for you and your family.... for the myectomy itself, as well as the myriad of other arrangmements that must be taken care of to make the myectomy possible.

                Take care,

                Jim
                "Some days you're the dog... some days you're the hydrant."

                Comment


                • #9
                  Re: Dylan's Myectomy scheduled

                  Our family will keep Dylan and your entire family in our prayers

                  Shirley
                  Diagnosed 2003
                  Myectomy 2-23-2004
                  Husband: Ken
                  Son: John diagnosed 2004
                  Daughter: Janet (free of HCM)

                  Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                  Comment


                  • #10
                    Re: Dylan's Myectomy scheduled

                    Hi Dee,

                    Dr. Tweddell did all three of my kids' surgeries. He is very skilled and very good with the kids. You will get excellent care with his staff. His assistant's, his nurses and all the ICU staff are wonderful. They took excellent care of my kids. We'll be praying for Dylan's quick and uneventful recovery. Please update us if you can.

                    Take care,
                    Michelle - mom to Krista and Tyler both HCM
                    Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                    Tyler surgery: 1/98 myectomy

                    Comment


                    • #11
                      Re: Dylan's Myectomy scheduled

                      It is great to know he has recent experience with myectomy and you have had a good experience at the center!

                      Best to all,
                      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)

                      Comment


                      • #12
                        Re: Dylan's Myectomy scheduled

                        Dee-
                        My thoughts & prayers are with your Family.
                        RONNIE

                        Comment


                        • #13
                          Re: Dylan's Myectomy scheduled

                          Thank you from the bottom of my heart for all of the thoughts and prayers. I created a quick web page at Caring Bridge to keep people updated with how he's doing - I figured it'd be easier than trying to make tons of phone calls and emails from the hospital.

                          http://www.caringbridge.org/wi/dylan/
                          Dee, Mom to Dylan
                          (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

                          Comment


                          • #14
                            Re: Dylan's Myectomy scheduled

                            Dee, What a great thing making the web page . He is so cute he smiles like he's being tickled! You will need lots of strength in the upcoming days and weeks so take very good care of yourself. A mothers heart feels all of her childs pain and suffering. We are here for you. God Bless Dylan and you and all your family. Pam
                            Dx @ 47 with HOCM & HF:11/00
                            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                            Lead failure,replaced 12/06.
                            SF lead recall:07,extracted leads and new device 2012
                            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                            Genetic mutation 4/09, mother(d), brother, son, gene+
                            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                            Comment


                            • #15
                              Re: Dylan's Myectomy scheduled

                              Dee, I will be praying especially for you and Dylan in the next few days.

                              Rhoda

                              Comment

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