Newbie

Hiya, I'm parent to a 5 year-old who was 'pacemakered' last week- side effect of his 2nd OHS was total heart block, hence the need for the pacemaker. Still in shock as, although I was aware of all the other risks of his surgery, needing a pacemaker, or rather- being totally pacemaker dependent- wasn't even mentioned as a possibility until the morning of the surgery when the 'small print' mentioned a 5% chance of needing a pacemaker'.
It's all quite a lot to get my head around, mainly because he doesn't have an underlying heart rate currently, and they don't have great hopes of this recovering, so I'm just terrified of something going wrong with the device, or him loosening his wire off before it's had a chance to 'bed in' properly. Preventing him from doing the things he's been advised to avoid for the moment is proving nigh on impossible as he keeps forgetting and- having 3 other kids and it being the summer hols- I can't be watching him every second of the day!! Any advice you can give me and has anyone else been in a similar position please?

3 Comments

Don't get too worried.

by Theknotguy - 2015-07-30 07:07:30

Don't get too worried. Try to keep him as subdued as you can. If he does something that hurts, he'll let you know.

The reason for the lesser activity (for adults) is to give time for the PM wound to heal. Past discussions on this forum have indicated that leads won't get pulled loose unless they were going to be loose anyway. i.e. outside activity rarely makes the leads go loose. No matter how hard he plays, chances are he won't pull the leads loose.

On the other hand, pulling the scar tissue can happen easily. So try, as much as you can, to keep him subdued. If he does pull the scar tissue, it will hurt and he'll know it.

Other items - You don't have to worry about anything in a typical American, UK, Canadian, or Aussie household bothering the PM. Same for schools. That means you don't have to worry about refrigerator magnets, most magnets found around the home, TV remotes, car remotes, microwave ovens, store security, airport security, cell phones, cell phone towers, and a whole host of other stuff. We had one parent who's child had a session with magnets at day care. She kept him out of the activity - didn't really need to.

As far as bumping the PM and not working that really isn't a problem. They are very hardy pieces of equipment and any bump he causes shouldn't bother the PM. Supposedly there was an instance of a PM being hit by a bullet and it still worked. Don't know if it's true or not, but it gives you an idea of how much punishment a PM can take and still keep on working. Any bump that would bother the PM would really injure your child. Something as serious as a high speed car accident.

You might tell his friends he can't leap off of tall buildings for a while, or play rugby with his friends, and not to throw the cricket ball hard. That may slow him down a little until the PM wound heals. After that he should be able to play as hard as he wants.

On the other hand, isn't it great? He feels so good he's doing what every other healthy kid should do - driving his Mother insane.

Feel free to use the search feature on the upper right side of the forum page. Search for kids. All I've seen on the forum are success stories. Mostly it's the Mom's who get stressed and not the kids.

Hope everything continues to go well.

Try not to worry

by Pacemum - 2015-07-31 06:07:19

My daughter has complete heart block and has had a pacemaker since being a few months old. Complications are rare. We have not really had any issues with her pacemakers just a few tweaks as she grew. She is now 15 and on her 3rd pacemaker battery.

5 Year Old

by Good Dog - 2015-08-01 10:08:42

I can't say that I know anything about a five year old with a pacemaker, but I have read lots and I've had mine for almost 30 years. So I can tell you that it has not restricted my activity or my life in any way. I even played competitive basketball with it when I was in my 30's.
I can tell you that he should be able to live a normal life in just about every way. Once the site is healed, there will be no need to watch him beyond the need to watch any 5 year old.
As a matter-of-fact, you need to let him live his life normally.
Sincerely,
Dave

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