If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Preparing 4 year old (almost 5) for surgery

Collapse

About the Author

Collapse

Dee Find out more about Dee
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Preparing 4 year old (almost 5) for surgery

    I'm wondering if anyone would mind giving me some hints, tips, etc for preparing my 4, almost 5 year old for myectomy? He doesn't have a date set yet, but we're getting closer to him needing it. I'd like to help him prepare as much as possible and be as prepared as can be for while he's in the hospital.

    Any ideas, information, suggestions would be really appreciated!

    Dee
    Dee, Mom to Dylan
    (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

  • #2
    Re: Preparing 4 year old (almost 5) for surgery

    wow, I dont have any ideas here. So sorry he has to go thru this.
    the good news is that kids do bounce back so much quicker from
    surgery than adults. I hope some others here can help.

    sandy

    Comment


    • #3
      Re: Preparing 4 year old (almost 5) for surgery

      Dee,

      You have my deepest sympathy and my prayers. My daughter had major kidney surgery when she was just turned 5. I think the most important way to prepare him is to assure him that you will be there with him 24 hours a day. I would also tell him to tell you every time it hurts and that you will do your best to help, but maybe sometimes all you will be able to do is sing to him (or whatever you do to comfort him now). I would be very careful not to tell him too optimistic a picture. We were told that since Michelle was so young, she would probably be out of the hospital in 4 days to a week. So, we told her that. But everything went wrong and she was there for several weeks. When we got home she was so ecstatic that we realized that she had become convinced that she would be there the rest of her life. One thing I would prepare him for is IV poles. We had three to carry all the tubes and bags, which is an unusual number, but in any case, I think that these are pretty scary so preparing for them is important.

      I do not know how to say what I need to say next. But maybe the most important thing is for you to prepare yourself. We were in a children's hospital on the major illness and surgery floor in a large city. Because we were there so long, I got to know the other mothers and their children who were in for long times. All of them that we knew well died, except Michelle. She also grew to know and love these families, so for her this was an awfully shocking thing for such a small child. We realized how much this was true when her gerbil died a few weeks later. She wanted to know if we should flush it down the toilet like we did goldfish that died. We realized then that she had no idea what happened to all those kids from the hospital. I still do not know whether to laugh or cry. But, needless to say we had a pretty formal funeral for the gerbil! So, I guess my point is that maybe your pain will be greater than his pain because you love him so much.

      You will have my prayers through this time.

      Rhoda

      Comment


      • #4
        Re: Preparing 4 year old (almost 5) for surgery

        Wow, I guess Rhoda said it all – but I’ve got to add my own two cents.

        Try to tell him in terms he can understand as much as you can. There is nothing as scary to a child as being in strange surroundings, knowing something serious is going to happen to them, but not having a clue as to what that is.

        By all means, tell him that you or someone will always be there for him – like dad or grandma, or some other close, known relative, or his best friend’s mom, or somebody he knows well. You’re going to need breaks from time to time, so you don’t break yourself.

        Another distraction that might help is planning with him what he’s going to do when he gets out of the hospital, - and after. A silver lining to look forward to when he gets out from under that stinking dark cloud.

        I guess we all empathize, and wish the very best for both of you. Please keep us posted.
        Burt

        Comment


        • #5
          Re: Preparing 4 year old (almost 5) for surgery

          Hello Dee,
          I belong to a support group called Heart 2 Heart, www.AZHeart2HeartSupport.org, for families that have "heart" children. We are associated with Phoenix Children's Hospital. One of the repeat questions that I hear from the parents is, "How do we prepare our child for surgery?" Every answer is different and every child's level of needs are different. It is all based on the age and level of understanding of that child. But, what I have heard that works well for these "heart" families has been the pre-surgery hospital tours that PCH offers. I don't know where or what kind of hospital you are planning on visiting, but that might be a way to help remove any underlaying fears you or your son would have on the upcoming surgery could be a tour.

          Just a thought...hope it helps!

          Sharon

          Comment


          • #6
            Re: Preparing 4 year old (almost 5) for surgery

            Hi Dee,

            My daughter was 5 when she had her myectomy. We had the surgery in Milwaukee at Childrens. They have a tour and a special nurse who sits down with the child and explains on their level what each piece of equipment is and what it does so the kids are as afraid. Secondly, they let the parents with the child all the way to the staging area (place just before the actual OR). So you are with your child until they actually are taken into OR. The kids are given medicine to relax them too so by the time you leave them they are not scared. While your son is in surgery, the circulating nurse will take you and your husband into the ICU and show you all the equipment that your child will be hooked up to. This will help you because its pretty scary to come into the room and see you child hooked up to a lot of foreign machinery if you are not expecting it. The nurses keep you updated all through the time your son is in surgery. Probably hourly. Finally, don't let the ICU nurses tell you to go home and rest. I did the first night my daughter came out of surgery, they called me at 2:30 in the morning because they couldn't calm my daughter down. I had to drive 1/2 hour to get back to the hospital. From that time on, I never left the hospital until my daughter did. I hope this helps some. I remember being more scared and worried than my daughter was. They understand some, but not as much as we think they do.

            PM me for info on our surgeon if you stay in Wisconsin for this. Take care, Dee.
            Michelle - mom to Krista and Tyler both HCM
            Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
            Tyler surgery: 1/98 myectomy

            Comment


            • #7
              Re: Preparing 4 year old (almost 5) for surgery

              Thanx for all the suggestions. I have a specific worry that kept me up all night last night - after the surgery will he wake up intubated? That seems to me like it would be very frigthening to wake up like that!! ?

              We still need to make the decision of where surgery is - I believe it'd be either Milwaukee or Mayo but we haven't come down to making that decision yet. I'm very satisfied with his PC and the treatment he's received at Milwaukee - and I worry about his continuity of care - yet Mayo has the numbers. It sounds like Milwaukee really does a good job of preparing the child as well. I still haven't figured out the words yet to talk to him about it later down the line. Unfortunately, his great-grandma is on her last days and we've talked to him about how she's getting old and her body doesn't work very well anymore and some day soon it will stop working and she'll go to heaven. I don't want to tell him that his heart his "broken" and needs fixing because I'm afraid he'll confuse the issue and think he's going to heaven as well! What do you tell a very bright yet emotionally immature 5-year old?

              Dee
              Dee, Mom to Dylan
              (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

              Comment


              • #8
                Re: Preparing 4 year old (almost 5) for surgery

                Dee, I just wanted to say that although I dont' have experience with this type of surgery, my boys have had 2 surgeries each, for tubes in their ears and having their adenoids removed. I understand the fear when you send your child in for any type of surgery, even though my experience is much more mild than yours. I'll be praying for you and Dylan. Please keep us posted.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: Preparing 4 year old (almost 5) for surgery

                  Preparing a child for a need your medical intervention is simply not easy. I think many of our members have offered good advice, suggestions and experience to help guide you. I personally believe that the location of where the surgery is done is the most crucial item to ensure quality outcome.
                  Specialty centers provide experience in the disease, surgeons who seeing the procedure done a daily basis, nursing staff that are familiar with all possible implications of the procedure and a cardiology department with experience in the care of all patients with hypertrophic cardiomyopathy. If Mayo is already on your list of possibilities that is where I would suggest the follow-up with.
                  In going to call a member who have a child they needed a man to me last year, she was 7. The procedure was very well in the child recovered at an amazing rate. The going to ask her to walk onto the message boards and speak to directly, her name is Laura.
                  Best wishes,
                  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


                  • #10
                    Re: Preparing 4 year old (almost 5) for surgery

                    Oh Dee, I am sorry to hear that Dylan will be needing surgery soon. It is never ever easy, no matter how much they, and us, have already been through.

                    Andrew was 6 when he had his myectomy at St. Mary's in Rochester (Mayo). Like others have said on the HCM board, Mayo also had a child life specialist meet with us before the surgery. It was extremely informative for all of us. And they were wonderful in explaining things to Andrew, at his age level, so he could understand without being too frightened. They gave us all a tour and showed him many of the apparatuses they would be using on him. (The oxygen masks, IVs, poles and bags, ect....) and it helped immensely.

                    They allowed us to walk with him right up to the OR door, and believe me, by then he was feeling pretty out of it. He didn't have a care in the world and had absolutely no fear! He was all smiles! That makes it so much easier to let them go through those doors!
                    Andrew was still intubated the first time we saw him, he was barely visible behind all the tubes, IV lines, and machines. But I know a lot of what he did have was removed quickly. Within two days he was down to just a couple IV lines. And always reassure yourself those first 10 hours or so after they wake up they do not remember later!!! By the time they are alert enough to have memories, the worst is over, so the memories are not too frightening for them!

                    One thing I also want to let you know in advance is this.....We were forewarned by the child life specialist that *some* children sometimes are angry at their parents when they first wake up. This was so true with Andrew! He wouldn't even look at me!! BUT, I was told to think of it as an old drunk. They don't know what they are doing or saying or how they are acting. It is the alcohol controlling their emotions. In our case it was the drugs causing the child's reaction! I was able to not take it personally and within a few hours he was happy to see us again! Be prepared for that and IF it happens remind yourself it is the drugs acting...........AND he will not remember those hours!!

                    One other thing that was nice at Mayo is that Andrew was on the cardiac ward. NOT the children's ward. His surgeon, Dr. Danielson, wanted his cardiac patients on the cardiac ward, (Back in '96 anyway) where all the personnel and nurses are trained specifically for cardiac issues. He was the only child on that floor that week and was treated quite special! They all said how "special" their child patients are to them because they don't get very many on that floor. They were all soooo sweet to him there, even stopping in on their days off to see him and giving him teddy bears!!!

                    As far as what to say to Dylan? Only you know your child well enough to know what he can handle hearing. At his tender age I know how carefully you will have to choose your words. Andrew was only one year older when we went through it with him. It was a heart wrenching moment for me, but Andrew honestly handled it better then I thought he would. But of course at that age he really didn't understand the seriousness of it. Just don't tell him more then you think he needs to know. Andrew's surgery was 8 years ago and just 2 years ago, at the age of 12, he finally realized his rib cage had been split open! That is just something I never felt the need to tell him, even years after it was over. I knew he would find that out on his own sometime. And he now thinks it is pretty cool.

                    Oh, and one more thing............I waited until 2 days before surgery to tell Andrew. I knew he would naturally have worries and concerns and I didn't see the need in telling him any sooner and having him worry for too many days. I also knew the next day we would be meeting with the child life specialist and she would be able to answer any of his questions better then I.

                    I hope some of this helped a little bit. If i can help in any other way just ask. My many thoughts and prayers will be with you all! Please keep us informed and many hugs to your sweet Dylan! What a cutie!!
                    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


                    • #11
                      Re: Preparing 4 year old (almost 5) for surgery

                      Dolly, good point about some being angry while waking up. One of my sons was that way and it broke my heart. I knew it wasn't personal, but it still hurt my feelings. Thanks for that reminder.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Re: Preparing 4 year old (almost 5) for surgery

                        Hi Dee,
                        Waiting for your child to have a major operation is not easy at all. Children are amazingly resilient and don't have the same level of fear and worry that us grown-ups do. My daughter had a myectomy at aged 3 and a half years (she is now 7). We explained to her in very simple terms that she needed her heart fixed and that the doctors would give her some special medicine so that she would go to sleep and not feel any pain. A few days after her operation she was back at home wanting to ride her bike! The only 'bad' thing Anna can remember is having her arm squeezed too tightly when she had her blood pressure taken! The highlight for her was having the hospital 'Play Room' to go to. The Play Therapists used play to explain some of the procedures (drew a 'zipper' scar on calico dolls and put hopsital name tags on them etc)
                        Your son is a wee bit older so will understand more. My advice to you is to try and keep a normal routine going at home and don't let the 'looming hospital visit' become your whole focus. Still try and have some fun. It's hard I know - I ended up having major panic attacks during the months/weeks leading up to Anna's first operation. Your son needs to know that you have faith and confidence in the surgeons and doctors who will be looking after him - explain to him that surgeons do this sort of thing all the time, share with him stories of other children who have been through it and are now okay. Answer any questions your son has matter-of-factly, truthfully and obviously tactfully - knowledge is power even for helping children to cope. Children worry about different things to adults. Us grown-ups worry about the big things and children tend to be more concerned with the little things - "can I take my barbie dolls to hospital?"
                        You know your son best and I'm sure you are preparing him well. The most important thing is that he knows you are there for him and will be with him through the whole experience.
                        I wish you all the best and look forward to hearing how your son gets on.
                        He will be in my prayers. Please let us know when you have a date confirmed for his operation.
                        Bye for now,
                        Alison
                        Auckland, NZ

                        Comment


                        • #13
                          Re: Preparing 4 year old (almost 5) for surgery

                          I too have a 4 year old that (according to the doctors) will likely need "major" surgery in the next 2-3 years. I don't know how I will tell him. I think that being open and honest is good, but with a 4-6 year old we have to filter the content. I like the idea of explaining that the doctors will be fixing his heart and that special medicine will help during it. Dee, please know you are in our prayers! Your son is beautiful. Please keep us informed as to how things go.

                          Does anyone have any information about the effectiveness of different surgeries on young children? i.e. does a myectomy generally work? Will the heart grow back the tissue and recreate the problem? What are the best options for a child with a VERY large septum (32mm) and no obstruction or symptoms? He even wore a halter (we told him he looked like a rescue hero with his "belt" and he actually complained when we gave it back to the doctors!!) and the halter showed no abnormalities. What is the lifespan of a young person with such a large heart (I know it can't be told "for certain", but what is the norm?)? If a transplant is done, is it better to have it done at a young age? Will the child then possibly be able to live a 100% "normal" life after? I assume the HCM would be gone for good if a new heart is placed in him? Do heart transplant patients need to take medication for the rest of their lives (anti rejection/etc..)?

                          Like any of you, having HCM is not something I enjoy. When I say my prayers at night or read about children with the disease here on the HCMA or watch my little boy (whose septum is larger than mine (he's 32mm).. and mine is too large(26mm)) play with his toys, I wish that the Lord could give me his heart problem (even if it had to be added to my current one) and let him have a normal heart. I know wishing gets us nowhere, but the thought of him going through a major surgery at such a young age is scary and I get sad when I picture him going into the OR, in recovery and having stitches.. he's so young, so beautiful, so sweet and innocent, I hate to think of him being scared or hurting in any way. I know those are all normal fears, I know Dee and many others can relate to them. I think having HCM is a peice of cake compared to having a child with it! Of course, I'd rather he go through the surgery and all that goes with it so he can live a long healthy life.. but man oh man.. it's tough. Dee, you and your son ARE in our prayers. Please keep us in yours as well. We covet them.

                          -D

                          Comment

                          Today's Birthdays

                          Collapse

                          There are no members with birthdays today.

                          Working...
                          X