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My 12 year old son's Myectomy - 1/25/06 @ NEMC

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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
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  • #76
    Janet, I am just catching up on your posts about James and I am so very sorry to read about the complications he is having! You must be so very worried, and hurting. I know first hand the pain we feel as parents when our children have to endure so much! I feel so bad that James has these added complications. Poor guy. I will be be keeping you all in my thoughts and prayers! Please keep updating often!! Hopefully everything will straighten out soon!
    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


    • #77
      Well this morning has been okay so far. Dr. Maron and Dr. Rastegar have been in and they have been consulting with other doctors as well. They are still puzzled as to what is going on. They are now thinking that possibly there is a small hole in one of the ventricles of his heart in the upper chambers. They are getting ready to do some kinds of transthoracic test where they will go down James' throat and look really close again at his heart. It would be like having a shunt in one of the thoracic valves. I think that's how I understood it. I am not 100% clear about it. They said he would stay in the ICU until they have a diagnosis to explain what is going on. They have just called and said now they are going to wait until tomorrow to do this test. They are afraid that when they sedate him he may stop breathing from all the problems he's been having so they want to wait and make sure they have everything ready in case they have to ventilate him again.

      So they are determined to figure out what is going on. I appreciate them coming in today when they normally would not. They all seem so concerned about James and just want to figure it out and fix it. James is hanging in there. He has been much more understanding about everything today.

      So I'll let you know if anything changes. Right now they are going to wait until in the morning to get this other test done and determine what is causing James' stats to drop so drastically. Thanks for your prayers and support. They told us to just relax the rest of the day and they would see us tomorrow. Bless you all for your prayers! Janet
      My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

      Comment


      • #78
        Janet ,

        I believe they are talking about a TEE( trans-thoracic esophageal echocardiogram). Unless there is something else that they are referring to , which then I am stumped. It is not so bad . Most are well sedated or at least the area is numb so that there is no discomfort with the tubing going down. They will send the camera down the esophagus( James will swallow it) and then they will be able to visualize the heart very well as the camera( echo transducer) is then right next to the heart.

        I did not have much sedation and it went fairly well with the local numbing. I am not too sure how James will feel about it so wait until tomorrow when they explain it to him so he will not be anxious, you all have gone through enough and need a day off.

        Thank you for keeping us updated , we are here and we care.

        My best,

        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


        • #79
          Janet

          I really hope James gets better and better with each passing day, please give him a hug from us and remember our thoughts and prayers are with you both

          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


          • #80
            Janet,

            Thank you for the update. We are all very concerned.

            I am continuing to pray for James.

            Hugs to you, James and your family.


            Eve
            49 yrs. old
            Diagnosed at 31.
            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
            My brother passed away suddenly at 34 yrs old from HCM.
            2 teenage children, ages 17 and 15.

            Comment


            • #81
              You know the most comforting thing is that these doctors are soooo good. In fact, they are smart enough (without ego) to speak with all the other experts, whether it be Dr Maron's Dad or Dr Lever in Cleveland. No doubt, they are pooling all resources, and beating down every issue so they in fact can figure it out.

              I hope you can rest a bit today and just slow your mind, ease into a chair, and just 'let go' for a bit of time.

              Continued prayers for James and YOU.
              Laura
              Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

              Comment


              • #82
                Janet:

                I am sorry that it has taken me so long to catch back up with your thread about James. After hearing all that you have gone through, it makes me feel awful my ever griping about mine. He's truly an inspiration to us all...

                Please know that Gena and I will devote many prayers to your family while James is recovering. He wants out of the ICU. He will get out of the ICU...then out of the hospital. His body will eventually decide to take matters into its own hands.

                Just be patient and all will work out for James, I just know it. Hang in there and keep posting with the updates!

                All of our love and prayers,

                Mark and Gena Ruth
                Lexington, KY
                Age: 38
                Wonderful wife of eleven years (Gena) with three great kids (Lindsey, Conner and Laney)!
                HOCM diagnosis: January 2004
                CCF Myectomy Club: January 16, 2006

                Comment


                • #83
                  Janet,
                  Andrew and I also want you to know that you are being surrounded in prayer. I know it is so difficult to keep facing challenge after challenge while there at the hospital, when all you really want to hear is that things are going ok, some uneventful news for a change. Please rely on your faith, Janet. God IS right there with you. He is holding James in his arms. Allow Him to comfort you. Trust in Him. We've got you covered in prayer; we're here, and we care.
                  Theresa
                  Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                  Comment


                  • #84
                    Janet, so sorry about how sick James is I am sending prayers your way.
                    Midge

                    Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                    ICD&Pacemaker 1996
                    Heart transplant March 19, 2004 @ Mayo Rochester
                    Mom of Kaye.

                    Comment


                    • #85
                      Janet,
                      I've had four angioplasties so far plus both renal arteries angioplastied plus both iliac arteries angioplastied and I've been in and out of the hospital more times then I care to think of. On Friday my 41 year old son had a quadruple bypass operation. I can tell you without fear of contradiction that it is ten times harder on a loved one then it ever is on the patient.

                      Hang in there sweetheart - the best is yet to be.
                      Burt

                      Comment


                      • #86
                        Good Morning! Well last night was a bit rough. They gave him Ambien to help him sleep and he became very confused and loopy most of the night. He kept trying to pull things off and getting up. So I felt like I have been hit by a mack truck this morning. Dr. Rastegar came in a few minutes ago and was upset that they had given it to him. He said he was not suppose to get anything except Motrin. They want all the drugs out of his system to see if that is contributing. They did not give him the Ambien until 1:00 this morning. So they have cancelled the test for
                        this morning and said they would do it sometime later this afternoon or tomorrow. Dr. Rastegar told the nurses that no one is to give him anything unless they talk to him. He was very upset.

                        I went to McDonald's yesterday and got him some nuggets, fries and a shake. He ate a half of a nugget and two french fries. That was all I could get him to eaall day yesterday. He still seems weak to me and just not himself. So we'll see what the tests show today. Needless to say I am whipped this morning. Carlton is going to be over here this morning and I am going to go get a couple of hours sleep. Thanks for your prayers and I'll let you know something as we know something!
                        Janet
                        My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

                        Comment


                        • #87
                          Janet,

                          Hopefully you were able to get a couple hours of sleep this morning.

                          Poor guy...bet he can't wait to get home and forget about Doctors and nurses for awhile!

                          Still sending positive thoughts your way. Keep us posted.

                          Rene'

                          Comment


                          • #88
                            seems like deja vu

                            I remember that they gave Felix an Ambien one night and the next morning I came in to find out that he had hallucinated and pulled all his stuff out. I think ambien and myectomies dont mix. Sorry to hear about all the extra issues. I hope they find out what the issue is soon. I also can fully sympathize on the food thing. This is probably one of the hardest things you have ever had to deal with. The onlyl silver lining is that you have your husband with you to support you. hugs and thanks for the updates to keep us informed.

                            sandy

                            Comment


                            • #89
                              Janet,
                              Sorry to hear of more difficulties. As for the Ambian, I hadn't ever taken anything like that til this hospitalization, and I don't think it made me act goofy, but it did knock me out, so much so that I don't remember some things (even the "mosquitoes" coming in to collect my blood each morning at 4am.) They also had me try Atavan, which was very helpful in relaxing me (especially the day of my ICD when I was very anxious), and much milder on me. I suspect it might not be bad for a pretty stressed mom to try, too, if you were needing something at least to help with sleep. I know it is very difficult to turn your mind off even when the physical exhaustion is there.
                              Continuing prayers for peace and healing ---
                              Theresa
                              Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                              Comment


                              • #90
                                Well the mystery that James has had going on has finally been figured out. They did a echo this afternoon where they put bubbles in his vein. They watched the bubbles go through his heart. They were able to find a small hole in the upper chambers of his heart. It is called a Patent Foramen Ovale (PFO). What a patent foramen ovale (PFO) is a defect in the septum (wall) between the two upper (atrial) chambers of the heart. Specifically, the defect is an incomplete closure of the atrial septum that results in the creation of a flap or a valve-like opening in the atrial septal wall. A PFO is frequent in everyone before birth but seals shut in about 80% of people.

                                They feel like the trauma from the surgery caused his heart to become irritated. About 25% of people walking around has this and it never causes a problem. Due to the surgery it caused the pressures in his heart to build up very high. The blood was then able to leak through the small hole and then blood could not get to his lungs and caused his stats to drop. That is what happened in the ICU when
                                he turned blue. There is not really anything they can do about it. Once the heart is less irritated he should be fine. He has not had any episodes since Saturday night. They are going to keep him in the ICU tonight and then put him on the floor tomorrow.

                                So we do not know yet when he will be going home, but they atleast have an explanation for why this has happened. He has been up this afternoon and finally ate some food. He looks better this afternoon then he has looked since surgery.

                                Thanks so much for your prayers and support. I am just so relieved that we know what has been happening and things are turning around. May God Bless you all!
                                Janet
                                My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

                                Comment

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