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Art Geddes
Art Geddes
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    My son Jeremy finally came home on Thursday, 6 mos and 15 days after I told him we would probably be just 2 or 3 hours to find out why he started running a fever. Ends up his fever was from a blood stream infection probably caused by a sinus infectionwhich we did not even know existed. The bacteria latched on to his leads for his icd so he was tansfered from on hospital to another to have his icd removed which created major rythum issues and spread even more bacteria through his body. He was then transfered to a third hospital to make use of thier pediatric icu where he spent 28 days in icu and then 5 1/2 mos on the peds unit. Since there is still a lesion of some type on his tricuspid valve the decision was made to place an icd in using epicardial patches instead of endocardial leads. The original plan was for a one hour surgery using 2 patches and 2 leads. The end result was 4 patches with 7 leads and 4 1/2 hours of open chest surgery. The changes were made during surgery which some what concerned me. Post surgery Jeremy had quit a but of internal bleeding which caused major bruising from his ribs down to his hips and then his kidneys started failing which caused massive swelling and adding on about 10 pounds of water. This had happened earlier in this adventure also and may have been related to a reaction to antibiotics. A week after surgery they had to drain fluid off his chest and got 700 cc. Then he started running fevers and they finally pulled his central line and the fevers quit. Finally 2 1/2 weekds after surgery he came home. They will still be doing weekly echos to follow the problem with the tricuspid valve and he is on several more weeks of iv antibiotics at home and needless to say we are still believing God for a healing from HCM as there is no other cure. We ended up with a very good Pediatric cardiologist who is familiar with HOCM and is willinmg to consult with specialist. Lisa I want to thank you for all your help and listening and work with trying to bring about the vest solution. The vest was actually nixed here at the hospital level by the medical ethics board. We were against the surgery as we did not feel Jeremy would handle the surgery very well and felt that God did not want us to do it at that time. After the hospital suggested medical neglect if we did not do the surgery we felt boxed in. Apparently we were right but we got though it anyway. We would have prefered to use the vest and decide on the type of defib after he had really gained back his health. Anyway we are now home and the stress and conflicts of an extended hospital stay are now behind us. After what I have seen of 6 months in the hospital I am investigating going to nursing school myself. I will talk to everyone later. Once again thanks.
    By the way, we could have avoided this if I had decided to have a vasectomy like my then girlfriends mother wanted when I was first diagnosed, but I wouldn't trade my son and family for anything. I do not regret my decisiuon one iota.
    Art Geddes

  • #2
    Re: Home


    That is great news to know he is home, he is a strong boy, he must have gotten it from his parents to have indured what you have over the last 6 months now, I hope he continues to improve now he has to feel better just being home

    Take Care and know we are still praying

    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


    • #3
      Re: Home

      I am SOOO glad to hear you are all finally home and that Jeremy is doing better. What a long, long haul he has been through. Poor guy

      I hope that he steadily improves now and there are no further set backs!
      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)


      • #4
        Re: Home

        Dear Art,

        Thank God! We also went through the what to do about surgery for my daughter when she was little, although hers was for a congenital kidney problem. We struggled with the healing issues, but saw God work in ways we could never have anticipated when we went ahead with the surgery. Everything medically went wrong, but our care for her through a long and difficult time ended up good for her. I pray that the Lord can do much more for you through all this.



        • #5
          Re: Home


          I'm so sorry to hear about all that your son has been through. Most of us can't stand being in a hospital for even a few days, let alone six months. Your family has been through a lot, and we're all thinking of you here. Being away from that hospital alone must be a huge relief for you! I hope Jeremy continues to improve from here on in.

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


          • #6
            Re: Home

            I am thrilled to hear he is HOME!!!!!!!

            You have been through so much and I hope you all are getting back into the swing of "normal" life.

            You remain in my thoughts!!

            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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