hello...

my son is 8 years old and has a complete heart block. he is having his surgery to place his pacemaker this coming tuesday. my nerves have been getting the best of me lately. his rate is 48 when awake and falls into the 30's with a 3 second pause at night. never shown any symptoms and you would never think he would have an issue with his heart....just looking to see if anyone can fill me in on what to expect...he's getting anxious also....

 

 

I also have complete heart block. My heart rate sans pm is around 42. Similar conditions. I got my 1st pm at around 2 weeks. old.

The surgery doesn't take too long and the recovery period is pretty short. The only think you can't do is carry things heavier than 5 pounds and lift the your arm on the side they implanted the pacemaker on over your head for a while.

That and shower for a few days but he's a boy it'll be fine. (i am a counselor at a junior high band camp and the guy counselors have to force those boys to shower)

He'll have a normal life and childhood. He just can't do contact sports, so no martial arts or football or atleast no tackle football. And in my experience all football turns into tackle eventually. Although for martial arts I think they have tephlon vesty thingies you can wear now.

The scar will be a little line by his collar bone and if his guy buddies ask what happened he can say ya'll were at the beach and he got bit by shark. (that was my lame joke now its got into a bar fight you should see the other guy when I don't want to answer questions.)

He won't be able to swim for a while which stinks because its summer.

Sorry this was choppy I was just trying to think of everything to say. If you can any specific questions I can answer them I was a kid growing up with a pm and now I'm slightly less of a kid at college with a pm.

-Sarah

 

Thank you! He is only 44 lbs and they are putting the pacemaker in his abdomen.

He just learned how to swim - which is going to be the most difficult part. He's a fish and you can't get him out of the water. Do you know approx. how long he can't swim for? He'll be sad about that....

We know he can't do any contact sports...he loves soccer.

I appreciate you taking the time to calm my nerves a little. They told me the procedure itself takes about an hour and a half and he will be away from us a total of 4 hours. I'm assuming since they are placing in a different spot...in 5 years they told us battery replacment.

 

Hi Jamie,
My heart goes out to you. Although it is a necessary procedure it is quite simple. The hardest part is the waiting. I had my 1st one 9 months ago with regular sutures and I had to have a pocket revision (pacemaker was moved) 2 months ago and they used liquid sutures. With the liquid I was able to shower the next day. Ask your doc if he can use that stuff, or if children can even have it. With your son getting it in his abdomen I don’t know the restriction if any he may have your doc will let you know.

Try to relax, maybe look up some info with pictures or diagrams to show your son so he has a mental image of what he is getting. My 6 (almost 7) yr old granddaughter asks me a lot of questions and I have showed her those kinds of things and it did not freak her out or anything she just said, OH…

Your son is going to respond to this issue by how you’re handling it, so in his presence make it a no big deal thing, in private cry your eyes out because your baby has to have something done; you’re a mom it does not matter if it is something like this or him falling off his bike. To our children or my case grandchildren we keep a smile on our face and say positive things so not to let our little one’s worry or be scared.

Just remember the pacemaker is going to help, it is going to allow you to sleep more peaceful at night knowing you have a helper watching over your sons heart so that it will not stop.

Another thing I did with my grand daughter is we named my pacemaker. She named it “little heart” so after he gets it and he is still in the hospital (if you have to stay) tell him we need to come up with a name. It’s like a game and it seem to make my granddaughter relax a bit. It took us many days to come up with a name and a lot of laughs getting to one. It kept her mind occupied. I know it is different because it is actually your son having it done, but I think the mentality of the age is the same, how they process things. We worry way more than our little ones….

Good luck and my prayers are with you
GiGi

 

I'm sorry to hear about your son. I got my PM (Pac-Man) last month after 58 years of thinking I was invulnerable. I'm doing fine and if a 58-year recovers quickly, a resilient 8-year old will surely do better.
I'm a swimmer also (competitive swimming - Masters level). The people at the hospital told me to avoid swimming for 6 weeks to give the leads time to settle in the heart. After a month (May 25th), I'm itching to get back in the water, so your biggest concern will probably to keep your son on dry land!
Don't worry about the procedure. I don't know about pediatrics, but I was awake through the whole thing and it seemed very routine as I observed the staff.
I can't tell you not to worry: You'll do it anyway because he's part of you. Remember this: my doctor told me that complications are rare and led me to think that they're always repairable. In addition, kids have not had the time to pick up the bad habits of an adult so your major problem may be to keep him quiet for a while. Best of luck and write back to let us know how it went.

 

I don't remember exactly how long the swim restriction is but 3-6 months seems about right. If you have anymore questions just ask I've been an 8 yr old with a pm.

 

but that was 6 years ago so its prob. a little different now.

 

Thank you everyone...I appreciate all of the info.

My son is such an active little boy and has 2 younger brothers...he's very active and I believe keeping him down is going to be the hardest part. A little bit of a lifestyle change for him at first but it's what needs to be done. We are thankful everyday that they discovered it. He's never been symptomatic so in a way makes things a little bit more difficult for him to comprehend. He understands that his heart needs help and knows he gets tired easier than others. I had taken him in for an ear infection when he was 5 and they told us they felt he may have developed a heart murmer to get it checked...well walked in thinking heart murmer and walked out with a holter monitor, alot of tears and a stage two heart block. Everyone who knows our son looks at us in amazement and almost shock with the comment always being..."He has a WHAT and needs a pacemaker?!?!" We are now at stage 3 complete block within 3 years and it's time - yet still no symptoms. They had him on a monitor for 4 weeks straight a few months back. He had to wear it to school of course but he was ok with that. Just had to live with the anxitey possibly needing to drop everything and go if the doctors contacted us. Luckily that wasn't the case and we've had time to prepare all of us.

He is very bright and at 8 years old has already asked us questions like...Will the doctors know if "my computer" (he's been calling it that) malfuntions? He thinks he's going to be winning all the races at school now and kinda be like superman :) He will be having surgery on Wednesday of next week. We will be in the hospital for 3 days and then they told us a recovery of a week at home. Praying all goes smoothly...and looking forward to getting him home and his life back to as normal as possible. The not swimming will be rough on him but we'll manage to keep him occupied one way or another. They told me a minimum of 2-3 weeks....most likely more. Again thank you for your comments it's been helpful.

 

I agree with Gigi--take a deep breath and try (try!) to relax. Your son will be fine, but this is a difficult time for the whole family. I'm due to get a pacemaker next Tues., and I know a bit of what you're going through, but I think it's harder when it's your child than when it's yourself. Sending good thoughts....

 

Good morning! My son Kyle got his pacemaker two years ago. He was also 8 at the time. He also has 3rd degree block. Kyle also is very active. Sounds like we have a lot in common! :)

Long story short, 8 weeks after his surgery Kyle starting pitching for his baseball team, has pitched in 4 World Series events the past 2 years, and is preparing to go to Orlando next week to pitch against 32 of the best 10 year old teams from the U.S. and Puero Rico.

We all felt the same as you all do going into the surgery. Life will be more normal than you think! Kyle doent even think about his pm other than when we do his checkups.

Please let us know how things are going! We would love to hear from you.

Kevin Higgins

Kevin Higgins

 

Thank you Kevin....I can honestly say after reading your post I felt more "at ease".

We are an athletic family now knowing we have limitations with our one son has made it more difficult with him understanding why his brothers can play certain sports and he can't.

I'm glad to hear Kyle is doing so well...that is amazing!

I will keep you posted as far as how my Rudy does. We're all anxious right now...more so mom and dad at this point. Looking forward to having this part of our lives past us and knowing in a few months time we will hopefully look back at this and say..."That wasn't so bad."

 

Just a note to let you know you guys are in our prayers! Things will turn out great tomorrow i am sure!

Keep us posted on how things are going!

Kevin

 

Leaving this morning - surgery is tommorow. But we have all the preadmission testing today.

Mom and Dad seem to be ALOT more anxious at this point. :)

Will keep you posted and thank you again for your comments.

 

Hi Everyone and good luck with the surgery. My 8 year old daughter is on her second battery and we found out today that it only has about one year before it will need to be replaced again, which makes since because she is in complete heart block and uses it 99% of the time. Each battery has lasted around four years and recovery was relatively simple the first go around. The shocker that we got today was that the leads are needing to be replaced also. Has anyone had any experience with the leads being replaced and recovery time. My cardiologist told us the to replace the leads this time they will go through some veins in her neck and lead it down to her heart. The first leads that were put in at 10 months old were put in while her breast bone was opened while they were repairing her heart defect. This time the doc says its simpler to go through the vein. Any information will help ease my mind and this point because I am a basket case right now with worry. Thanks everyone

 

Well...first two days were rough. But we are now home and healing. He had some issues with anxiety, vomitting and pain. But to be expected and were told all of that was normal. He's happy to be home as are we. The week of antibiotics he has to take tastes horrible and having a bit of a hard time masking it.

They placed an epicaridal pacemaker and only had to cut some cartilidge. Which I was told was good for an easier recovery. The pacemaker itself was just approved in the United States May of this year. It is called a Biotronik. Battery life of 12-15 YEARS. They are able to adjus settingst via computer. Cell phone 6 feet from his bedside and they monitor him (not sure if it will be daily or monthly) all data is transmitted via cell phone to doctors over the internet.

They told us this pacemaker has been used in Europe for years and the US "took it's time" in approving it here.

Alot of information to take in of course but we'll get there. Keeping him down right now is the hard part...he's up and running around the best he can. Constantly reminding him to take it easy!

 

I'm 33 and got my PM 10 months ago. I am an elementary school teacher as well. Have been for close to 10 years. I work with children your sons age all the time.

I'm wondering how he is doing? How are you doing? I hope he is smiling and enjoying the summer and getting to know the little device inside him.

I'm a mother too. I watch over my 2 year old all the time and watch her breathing...wondering if she one day will need a PM too. I can only imagine how scary this all must have been for all of you.

Wishing you all well!
Wendy

 

Hello, I know what to expect and how to expect things will go. I have had a PM since I was 3 years old and I currently have my 9th PM implanted. I have enjoyed life with a PM and have made many many friends due to having a PM. I enjoy having chat's, video chat's, and other communications with children concerning there upcoming PM, what to expect, and how to live a happy and fulfilling life with the new PM. I will be getting my 10th model later this year, I look forward to it and will be more than happy to share my experiece with pacemakerclub.com, through my facebook page, and online through my www.oovoo.com account. I hope that all is well and if there is anything that I can do to help or ease anyones mind, please do not hesitate to let me know. My name is Charles, from Georgia, and do not mind talking to anyone about the life changing circumstances involved with getting there first PM or questions about the one that they have in them now.