Pacemaker abdomen

Put the oxygen mask on yourself first

by Gotrhythm - 2017-09-25 15:58:05

My heart goes out to you. Your anxiety and depression are completely understandable. You have been through a traumatic experience. But if you are going to have the strength to be there for your daughter through the long haul, you need to get some support for yourself.

You know what they say on the plane. Put the oxygen mask on yourself first.

Most hospitals have clinical psychologists, social workers, or counselors familiar with the emotional trauma parents experience when a child is seriously ill. Possibly they can help you find a parents' support group where you can meet people who understand your anquish as few others can, and with whom you can share.

Your child does need you to advocate for her. No one can do it better. But the more emotional support you have, the clearer your thoughts witll be, and the more effective an advocate for your child you will be. And you'll feel better.

My thoughts and prayers are with you.

Kids with heart conditions

by Tracey_E - 2017-09-26 13:42:33

As she heals more, as she grows, it should settle in and be less in the way. Most people won't notice anything different, and if they do they won't bring it up. Teach her to answer the question for when they do ask. When I was 5 years old, I would tell people that the top and bottom of my heart didn't talk to each other. I can do a much more sophisticated answer now, but that first answer still pretty much sums it up. 

Let me start by saying there is no reason to think your daughter won't grow up perfectly happy and well adjusted. Many of us here have. Will there be both physical and emotioal hurdles? Of course, but when I look back at my childhood, my heart is not the first thing I think of.  My heart condition does not define me, it's just a small part of who I am. In some ways I think it makes us stronger and more empathetic because we deal with things at a younger age that most get well into adulthood before they even have to consider. I firmly believ that there is something good in everything. 

You have the power to give your little girl the tools to handle the obstacles she will face. I don't think I fully appreciated how amazing my parents were until I was an adult and a parent myself. I'm sure they were terrified but they never ever let me see it. I had limitations but they never focused on that, only what I could do. Instead of sports, I had horseback riding and art lessons and scouting. I saw doctor's appointments as a day off school, wasn't I luckier than those other kids who had to go to class?? In high school, I will confess that I may have on occasion used it as an excuse to get out of things I didn't want to do. I figure that made up for some of the times there was something I wanted to do but wasn't allowed! It was a slightly different childhood. It was not an unhappy or scary childhood. But it all starts with you setting the example, swallowing down the terror in front of her, treat her as you want her to see herself- strong and independent. 

Something I don't think a lot of parents realize that when we are diagnosed very young, this IS our normal. We don't have memories of anything else, no shock of diagnosis, no previous normal to compare it to. I think in a way it's easier to be the kid than the parent. I always knew my heart was different but I never saw it as a bad thing, just different, just ME. I was never afraid, kids don't think things through and worry like adults do. 

People follow our leads. If we treat as a big deal, as something scary, then they will worry and baby us. My parents never made a big deal about it in front of me. As an adult now, I do the same. Pity is the last thing I want. I don't want people worrying about me either because I truly do not worry about myself. My condition is stable, my life is full and active. 

When she gets a little older, check into this. http://campodayin.org/

Resources for you to find other families for support. http://www.mendedlittlehearts.org/

Children and pacemakers

by Selwyn - 2017-09-26 13:47:16

" it's gonna worry her and people will feel it and bring it up"

Why should it worry her? She is five and is likely to be accepting ( if you are). She must have many toys she plays with that are battery powered. Now she is!  What has a five year old got to worry about? She should be reassured that her magic box with the battery keeps her well- this makes her special, unlike other children. She has an advantage. Positive thoughts should abound. 

She should be trained not to fiddle with the box, as constant fiddling can cause the site to become loose etc. Is there a reason why others should be feeling her tummy? Certainly, you would not want all her school friends to be doing this, no matter how magic the box. Who knows what is under the vest?  In my day, in primary school, exercise for girls was done in vest and pants, never just in pants. Swimming for girls tends to be with a proper shoulder to hip costume, so the tummy is covered. People will only know about what is around her tummy if they are told. Who is doing the telling here?

As Gotrhythm advises, someone for you to talk to, perhaps with a child in a similar position, would be a help. If your quality of life is being affected by your thoughts, here in the UK, you should be sharing your thoughts with your family doctor. CBT  ( cognative behavioural therapy ) would probably benefit you. If you have clinical depression, then medication can be     useful. 

If you search this site you will find many reports of young people have pacemakers and growing up to be fine people, some sports people, without any particular problems. I wonder what the record is within this club for having a pacemaker the longest? Almost certainly, more than your age as a Mother,  as your daugher is five.

Best wishes,

Selwyn

Abdominal Pacemaker

by Pacemum - 2017-09-26 17:44:34

The pacemakers do tend to be more prominent in the abdomen.

It may take some time for Pearle to get use to it and it may help if you explained more about her pacemaker as she grows.

http://flipbooks.leedsth.nhs.uk/LN003899/

http://flipbooks.leedsth.nhs.uk/LN003900/

Positive information thank you

by pearleamy - 2017-09-27 06:38:47

Being a dad I want to protect her so have found it difficult cause all I can do is support my daughter the rest is pretty much in the experts hands . The positive information you have all given me has helped me enormously thank you so much. My little girl is everything to me and I want support her and make her at ease with having a pacemaker and live a normal life 

what's normal

by Tracey_E - 2017-09-27 09:54:57

For your daughter, me, and thousands of others like us, paced IS normal. Fill her life with love, keep her busy with the activities she's allowed to do so she doesn't miss the things she can't, and don't make an issue of it when things do come up. Teach her that different can be a good thing. She'll be fine. This is so much harder on the parents than the kids.