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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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  • #31
    Hi Janet

    I can tell you from my experience when that tube comes out the last thing he will want to do is talk. It will take a few days until he sounds near normal. I can also tell you that ice chips with water and a popsicle goes a long way once that tube comes out.

    Scott
    Every day is a present I was diagnosed when I was 38, I have asthma which made me assume it was ashtma, getting old, and being about 30 lbs over what I should be. I have days when I would rather not know. Myectomy club 3Jan06 CCF, my life is so much better!!!!

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    • #32
      Janet, I am praying for James and for you. I am sending well wishes and holding all positive thoughts. Please keep us udated when you can.

      Many, many hugs,

      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


      • #33
        Janet ,

        Thanks for the update , I think we all sit here and watch and wait anxiously for the updates about all our myectomy buddies. You know ... the extended family

        I hope today goes well for James especially when the tube comes out. The puffiness will go down slowly but, it is hard for our loved ones to see. Remember day 3 will be even better for James, (Dr. Marons' words exactly as he told them to me in 2003.) He was right!!!

        I hope you are getting some rest. If you need to talk , just give a call.

        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

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        • #34
          HUGS--HUGS--HUGS
          THOUGHTS--THOUGHTS--THOUGHTS
          PRAYERS--PRAYERS--PRAYERS

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          • #35
            I saw James mom and dad again today. they seemed VERY upbeat. hopefully when Janet gets time she will post.

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            • #36
              Hello everyone: Today was a good day. It took about 2-3 hours to get James off of the ventilator. When they started trying his respirations got to be steadily over 30. He wasn't taking very good deep breaths either. The anestisiologist (?) came in that were with him in the OR and took about an hour with him and they did finally get it out. Dr. Maron came in while they were working on it and he seemed to be able to calm James down. He is so encouraging to James and just makes everything better.

              James was definitely thrilled when it finally came out but was pretty wore out. They of course had him on a mask for a while and now on the nasal tube. His chest tubes are still draining a fair amount so it will be tomorrow before they remove those. He had a great afternoon. His pulse though is staying in the 135 to 145 range. Dr. Maron did say they seem to see that with this procedure. This evening he has been running a temperature. They are trying to get that down now. He has not wanted to eat, move, or drink anything. Dr. Maron said they would get him up tomorrow and hopefully will get him to the floor sometime tomorrow. So we have just been thrilled with the care we have received here.

              One thing I did not realize they would do was the large i.v. in James neck. He has really not liked that at all. They hope to get it out in the next day or so.

              There was another lady that had a myectomy today. She is in the ICU beside James. She seems to be doing okay.

              So things are going good and I am so happy to be at a GREAT hospital! Thanks so much for all your comments and kinds words of encouragement! Thanks, 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.

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              • #37
                Glad to hear James is doing better now.
                Hope every day the news get better and better and James has an smooth recovery.
                Cleveland Myectomy Club
                August 31, 2004

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                • #38
                  Janet - Take care of you too!
                  so glad to read of progress! Linda

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                  • #39
                    Janet,

                    So happy to hear the progress James is making .. Yes HE WILL feel better about each and every piece of equipment that they remove and his appetite will return gradually also. I understand perfectly about that neck IV .. YUK, YUK!! Back then my roomie in the hospital and I would make comments like we were both turkeys( it was before Thanksgiving) , it reminded us of that thing turkeys have that hangs down , was so so glad when they removed it

                    Tell James I said hi and to hang in there, it will get better each day. You take it easy too!!

                    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


                    • #40
                      glad to hear how things are progressing

                      Listening to your story brings back my memories moreso than any other, as you are reporting as the mom (and I was as the wife), also at NEMC.

                      Make sure you keep on top the nurses regarding pain meds until the chest tubes come out. We had lots of issues about that, but with a minor I think they do tend to be better about those things.

                      In our case, we were lucky in that the breathing tubes and neck IV came our pretty early; the chest tubes stayed in later than we wanted. BUT I had a very hard time getting Felix to eat. I dont think he did eat while at NEMC. Each person is so different with that.

                      Noreen, from Dr Rastigar's office was a GREAT help whenever we needed something.

                      sending hugs. MAke sure that you are getting rest and you are eating. I know that was tough on me. Also at the time I had to go back to GA and then come back to NEMC because of the kids. I sent Felix's brother to "babysit" while I was gone.

                      sandy

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                      • #41
                        This may be more detail then you guys want, but I enjoy writing and it is good therapy for me. Last night Carlton and I took turns staying with James. He did not want to be alone and we wanted to be with him. James was running a fever most of the night. His heart rate stayed high as well. Carlton stayed till 2:00 a.m. and I came in from the hotel right around 2:00 a.m. James would sleep maybe 10 minutes at a time and
                        then wake up. He is still having a good bit of pain and seems very afraid to move.

                        He has not eaten anything yet. They did move him around some in the bed with pillows. About 6:00 this morning they got him to stand up. Needless to say he was very upset and had a good bit of pain. They wanted him to sit in the chair but he wouldn't, his heart rate went to 150 and his blood pressure got higher so they let him lay back down.

                        The doctors came in at 8:30 and said they could take the chest tubes out. Right when they said that a sheer look of terror came on James face. Dr. Maron said he looks petrified. He was. That was the one thing he was most scared of. He asked me to get his dad to come so I called and got him awake and had him come over.

                        They gave him several doses of morphine and toradol. Carlton got over here and I left and let the two of them handled it. James is very private where I am concerned and did not want me seeing any part of his body. That is fine, he is now a young man and I understand that. When I came back in Carlton said it was extremely painful for him. Afterwards they gave him two percocet. So hopefully he'll rest some.

                        They were trying to get him to do the spirometer and he had a lot of congestion. So now they are going to give him a breathing treatment. They have the i.v. out of his neck and only one is in his hands now. They are going to take the catheter out later this morning.

                        They did put him on Lopressor because his heart was staying consistenly high.

                        So things are progressing. He is still scared. They are hoping to move him to a regular room in the Cardiomyopathy Center later this afternoon.

                        Thanks for your prayers. Out Pastor and his wife left this morning. It was so awesome them being here. I will keep you guys posted as things progress. We appreciate everyones prayers! Love, 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


                        • #42
                          It posted twice so I deleted this one. Sorry!
                          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


                          • #43
                            My 12 Yar Old Son's Myectomy

                            Dear Janet,
                            You and James are in my prayers. It is gut wrenching to watch a child suffer and you appear to be holding up wonderfully. My daughter is 8 and I can't say I would do as well in your situation, so many thanks for the details of his surgery and for the courage you are displaying. It helps us all.
                            Deborah H.
                            Daughter 12, Chinese adoptee, diagnosed April, 2005- ICD 2008

                            Comment


                            • #44
                              Hi Janet,

                              When James starts using the spirometer, he will probably begin to feel better. My lungs were tight for a while and (sorry this is gross) after surgery I coughed up as much as I could. I had boxes of tissues next to my bed and when I would feel a cough coming on, I would grab some tissues and cough up.


                              I am praying for James and for you and your husband.

                              Hugs,

                              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


                              • #45
                                What a wonderful support for James to have his parents so strong and encouraging.

                                I said last summer, I'm glad I am the one having surgery and not my children. Prayers to you as you 'manage' through this. I don't know if this is my future with 2 small children, but it's good to know there are others we can draw on that have been there.

                                Tell James we are 'with' him and holding him up in prayer.

                                Blessings, Laura

                                p.s. I hated that tube in my neck, too!!!
                                Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

                                Comment

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