Pacemakers

Renee - posted on 06/12/2010 ( 11 moms have responded )

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My son Jack (who is six months old) has a pacemaker now as a result of needing open heart surgery when he was 4 days old to fix his asd, vsd, coarctation of the aorta and an aortic valve reconstruction. He is doing really well now. Does anyone else have any experience and any tips regarding the pacemaker. It would be great to hear your stories:)
Thanks!

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Cicely - posted on 09/08/2012

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Thanks for posting the symptoms Erin. My daughter is 4 yrs old and had a pacer put in at 3 months. One of her leads fell off and the doc said that one was just a back up for the second one, anyways I appreciate all the stories. :)

Erin - posted on 07/07/2011

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So Etta wants to start playing sports like her cousins. I am interested in knowing what protection for her pacemaker is good. I came across this one company but not sure. Has anyone used them?

http://www.paceguard.com

Erin - posted on 06/07/2011

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Renee,
So glad to hear that Jack is doing well. How scary. Every time Etta gets sick, I get super worried. I was starting to think that I was a little nutty, but hearing what happened to Jack make me feel like I was just being careful. Thanks for sharing.

Renee - posted on 06/06/2011

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Hi there,
My little boy Jack is doing really well. Just after Christmas he was really sick- we thought he had a virus- but when we took him into emergency we soon came to realise his heart rate was down to 45bpm because one of his pacemaker leads was completely broken. The hospital managed to switch the pacemaker to ventrical pacing on the good lead which made his heart rate go back up to 120bpm. The cardiologist sent us home for a couple of months, then Jack went back in for a full pacemaker replacement. Jack is doing so well now with a new and better pacemaker!

Erin - posted on 06/06/2011

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Erin,
Thank you for sharing what happened to Caylen when her leads broke. My daughter is too pacemaker dependent and loves to climb!

Erin - posted on 09/05/2010

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Renee -

For us it was an emergency surgery. Caylen had been having episodes of arrhythmia for several months that we couldn't find a reason for. Evidently one of the pacemaker leads had broken, but wasn't completely broken in half, rather it had become an open circuit that was cycling and when she moved certain ways, it would quit working, causing arrhythmia. The other lead had become surrounded by scar tissue, so it wasn't working well, either. When the broken lead finally broke in half, the pacemaker quit working period, causing Caylen's heart rate to fall drastically - first into the the 60s, then downward into the 30s. She collapsed and began vomiting, so she had to be rushed to the ER. They admitted her to PICU to stabilize her enough to do surgery the following afernoon. Caylen's heart is very difficult to pace and she doesn't have the best heart tissue to implant leads into. She has arrhythmia when she gets sick, like now as she has a bladder infection. Caylen will never be able to live without a pacemaker. It's not a temporary measure, but a permanent one. She has the best one on the market, but the technology is still not quite what she needs. That hasn't been developed yet.

Glad to know Jack is doing well! Hopefully, he won't have any issues. I didn't expect her's to fail, but her doctors have told us not to restrict her as what will happen will happen. LOL Easy for them to say! But, I'm glad they want her to be as normal as possible. :)

Renee - posted on 09/05/2010

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Hi Erin Ayscue!
Thanks for writing back. I was just wondering what happens when the pacemaker breaks? Is it a rush to the hossy for emergency operation? It's one of those things I want to be ready for if, or when, it happens to Jack.. He's nine months now, and doing amazingly well:) And no doubt he will be climbing on everything in no time!

Erin - posted on 09/04/2010

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As for the cell phones, we weren't told to keep them away from her and haven't had any issues with them. We were told to keep her away from any magnets that could hold up a set of keys and let that be our guideline. According to her cardiologist and surgeon, smaller magnets (like the alphabet and number magnets that go on the fridge) are not an issue. But, those that can hold toys up on the fridge are out.

Erin - posted on 09/04/2010

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Renee - my three year old daughter, Caylen, has had a pacemaker since she was six months old. She had to have it replaced this past May as it broke, possibly due to the fact she climbs up, on, over and underneath everything in the world. She loves bounce houses, too. Her doctors told us that we shouldn't restrict her, though. We've had very few problems, with a couple of exceptions. Her pacemaker can set off store alarms on occasion, so we keep her pacemaker card with us. Also, she has to avoid large magnetic objects, which isn't usually a problem, unless you count walls painted with magnetic paint like at a couple of play places we've been to. So far, it hasn't been too bad!

Erin

Renee - posted on 07/10/2010

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Hi Erin!
Great to hear from you! No you are not crazy at all..I am exactly the same!!! We never put mobile phones near Jack, or game consoles..one time we took him into an electrical appliance store without even thinking and he got very aggitated, so we don't take him in there anymore! Also, we are quick when going through security! We make sure people take their mobile phones out of their pockets before holding him...now they do it without us having to ask which is great!

Erin - posted on 07/08/2010

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My daughter got her pacemaker at age 3 months. She is now 19 months. She is just as wild as all her friends. I on the other hand am a little nutty when she goes to play with others. We have a no magnet policy. Many kids toys have magnets. We were force to return a few of her birthday presents because they had them. Do you worry about magnetic toys or I am I just crazy?

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