6 yo son getting PM Oct 17th

Parents of littles with pacemakers, please let me know what I'm in for and what to expect. Our son Jackson goes to UCSF Oct 17th. For the past year I've been mourning his 'normal' since I anticipate more physical restrictions after implantation. He has tricuspid atresia so we are very familiar with the hospital scene & recovery after open heart surgeries & other procedures. Jackson came out of his Fontan surgery at age 3 pacing half the pre-op rate (his ave is in the 60's daytime, in the 20's at night with pauses up to 4 seconds!)
Because of his restricted access & diff blood flow pattern, they are placing the 'box' below the rib cage & it will remain there forevermore.
Besides all the restrictions his surgeon was telling us, we also don't want him to be uncomfortable. Is there a sensation that it's there, like when they compress their stomach or bend forward...did any of you have any negative experiences that perhaps you could share to help us prevent him any discomfort? Or how you prepared them before the surgery (timing etc).
I know he needs this & it will give us all peace of mind. We are saddened that he needs the PM about a decade earlier than his tricuspid atresia peers...but we are also thankful for UCSF & great medical care.

3 Comments

abdomen location

by Pacemum - 2013-09-14 07:09:41

My daughter (now13) has had a pacemaker since being a few months old. She had it sited in her abdomen up to the age of 7. It was more prominent to the eye as you could feel the box beneath the skin in that location. There were restrictions on things like gymnastics were it presses the stomach. As you son is used to restrictions it should not impact on his life much and he should be able to do most things he does now but take care with certain sports.

My daughters pacemaker is now located in the usual adult position and she recently had her 3rd.She prefers it were it is now as it is not noticeable when getting changed.

Hope that his surgery goes well. Jackson should find the operation straight forward compared to his other operations.

Abdomen Implant

by donb - 2013-09-14 11:09:22

Hi, I just had my 6th pacemaker implant done by a top specialist who does children implants. As he commented to me just before doing the surgery when asked about restrictions the said, "I usually find my young patients in the playground doing the monkey bars a couple days after the surgery".
Well, I'm 81 years of age & way too active, hence having used up my left & right chest sites & probably do more than "monkey bars" now with my belly implant. As it's just below my right rib cage at about my belt line and the leads are routed via my groin entering my vein where I've had cath's done numerous times.
I was not given any limitations of activities. I did buy some husky suspenders as I have narrow hips & my wide belt has always been a pain keeping from "pants on the ground". From my recent experience with my surgeon, I feel your son
Jackson will be just fine with his implant. I can't believe how comfortable my "child" implant is compared to the 5 implants in my skinny left & right chest area have been in the past 21 years.
If you like you might Google my Dr Lieberman @ Harper University Hospital, Detroit, MI. A very informative site especially on children implants.
DonB

Thank you

by kitkatrussell - 2013-09-30 03:09:07

Thank you for the info. I hope that Jackson is not bothered by the abdominal placement since that is going to be his permanent spot since his pulmonary artery was sewn over at 3 months old.
DonB:thank you for that website. Does your pacemaker stick out from your stomach to where it's noticeable with your shirt off - in other words can you make out the lines through your skin?

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