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Update on Dylan


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Dee Find out more about Dee
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  • Update on Dylan

    It's been 5 months since Dylan's heart surgery and he's doing very well. I apologize for not being very active on the board lately - I think I've been kind of decompressing and adjusting, etc. I do check in every couple weeks though and hope to be more active again now. This board has been such a great source of information and support, I hope to be able to give back some of what I've received! I don't know if I ever gave Dylan's entire history, so...if you're not in the mood to read a novel - run away while you can!

    Dylan was diagnosed with Hypertrophic Cardiomyopathy (HCM) at his 6 week checkup in 1999. After a very long weekend of worrying and reading very frightful things on the internet, we had his first echo and ekg and began treatment on beta-blockers.

    His growth and development was normal up until January 2001 when he come down with endocarditis and suffered a major stroke. After a couple of weeks in the hospital, his recovery was nothing short of miraculous and he shows very little outward effects from this now other than being left-handed. To the untrained eye it probably is not noticeable, but his doctor has noticed slight weakness on his right side, however nothing that requires therapy. He relearned walking and his large motor skills rather quickly. His fine motor skills are a little behind and require encouragement to practice.

    Spending several days in the PICU not knowing whether he was going to make it or not was an experience I can't put into words, however it really strengthened my resolve to be his advocate. His regular pediatrician had not recognize the petichae that along with his very high sudden fever were the tell-tale signs of a bacterial infection which led to his stroke. If I hadn't gone with my gut and kept a very close eye on him during the night to discover that he was unresponsive, we would have lost him.

    We continued his treatment of just beta-blockers. In April of 2002 he had eye surgery to correct both of his eyes from turning in. His previous PC did an echo at that time while he was sedated for eye surgery and decided that he was suddenly NOT obstructed - failing to take into consideration that he was under anesthesia. After watching Dylan's symptoms worsen and not understanding why his PC didn't seem as concerned as I was, I requested his medical records. This is when I discovered that his PC had changed his diagnosis to non-obstructed HCM!

    We took Dylan to see Dr. Towbin at Texas Children's and switched PC's to one he recommended. In April of this year his symptoms from HCM had progressed to the point where he required open heart surgery. His surgery was a myectomy and a mitral valve repair. At his last check-up in the beginning of September his echo showed a gradient of a whopping 13.

    So that's where we're at now. Dylan started school at Montessori a few weeks ago and absolutely LOVES it. I love it as well and the teachers have been very helpful and involved with learning about his condition and what to watch for, etc. It's a heckuva strain on us financially to be able to send him there but so worth it to have the peace of mind that he is in a calm learning environment with tons of one-on-one contact and watching caring eyes.

    This site and message board have been life-saving for us and I'm grateful.
    Dee, Mom to Dylan
    (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

  • #2
    Re: Update on Dylan

    Wow – now I know where Dylan gets all his strength. Wouldn’t it be wonderful if everybody could have a mother like you? You and Dylan are inspirations to us all.

    May the road rise up to meet you.
    May the wind be always at your back.
    May the sun shine warm upon your face;
    the rains fall soft upon your fields and until we meet again,
    may God hold you in the palm of His hand.

    traditional gaelic blessing


    • #3
      Re: Update on Dylan

      Wow Dee that is some story. May God bless you and your handsome little guy!! You both deserve it! Dylan is already blessed to have such a wonderful mom who is so on top of his care.
      2.6 Septal Measurement
      ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
      "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
      ~Steel Magnolia's~


      • #4
        Re: Update on Dylan

        Dee ,
        Thankyou for the wonderfull update on Dylan. It is so nice to hear about the success stories. He is real lucky that you watch over him and care for all his special needs. Some fortunate children do come to the right parents in life and certainly this is true for Dylan. I am glad that things have calmed down for you now and you can enjoy your special little boy and watch him thrive.

        Take Care .
        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


        • #5
          Re: Update on Dylan

          Words can't express how happy I am for you and Dylan.


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


          • #6
            Re: Update on Dylan

            Dee, What a tough, little guy! I hope it's smooth sailing from here on. Thanks for the update and sharing so much of your lives. Linda


            • #7
              Re: Update on Dylan


              What a great story. Glad to hear Dylan is doing so good.

              This site ( & LISA) has changed so many of our lives.

              Maybe we will all get to meet Dylan at the next anual meeting in NJ.

              A big hug and kiss to Dylan,

              Barbara & Stuart
              Cleveland Myectomy Club
              August 31, 2004


              • #8
                Re: Update on Dylan

                I'm so glad to hear good news about Dylan. He is a cutie.

                You are a strong and sensable mom. From reading your posts, he certainly is in good hands.

                Take care and give Dylan a BIG hug from me.


                • #9
                  Re: Update on Dylan

                  Thanks for updating us Dee. I was thinking about you a few weeks ago. Did you get invited to the Children's Heart Clinic Picnic in Milwaukee at the zoo this summer? I was watching for you and Dylan hoping to finally meet you.

                  Anyway, very glad to hear Dylan is doing so well.
                  Michelle - mom to Krista and Tyler both HCM
                  Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                  Tyler surgery: 1/98 myectomy


                  • #10
                    Re: Update on Dylan


                    Thanks for the update. We're all so happy to hear that Dylan is doing so well!

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


                    • #11
                      Re: Update on Dylan


                      You are the cutest little boy.... Glad you are doing so well

                      And mom thanks for the update

                      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


                      • #12
                        Re: Update on Dylan

                        Thank you for the update - I am thrilled Dylan is doing well and very HAPPY that the HCMA was here for you!

                        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)