My 22 month old son, Max, got his new generator and leads last week plus they repaired a hernia caused by the first implant at 1 day old. His new pacer is an Adapta DR model (epicardial/abdominal) and I am excited to read about it's stated ability to reduce the impact of long term pacing on the ventrical. He also got 35 cm leads to replace his 15 cm leads that had stretched too short from growth. He is 100% dependant. He is doing very well and though clingy and uncomfortable, he is well managed with just small doses of motrin and tylenol. He is playing more, eating better, and more independent each day.

I would love to hear from people with an Adapta pacer - any issues, comments, etc. Also, people who have received pacers while growing - how many years have you been able to get out of leads this length? Finally, has anyone else developed a hernia after abdominal placement and did it heal totally? They are saying he may need an additional repair of it.

Oh - and he is very small for his age but his EP has said that she has seen anecdotal evidence of growth after a good/new implant - since his heartrate and response should be more natural (he was mostly at 110 BPM 24-7 before). Anyone have this experience - eating better, sleeping better, after surgery?

And really, finally, sleeping. He has been up in the night most nights since his surgery. Is this a normal adjustment phase? Or anxiety and stress?

I really appreciate your attention and responses here. He is quite verbal but not enough to articulate most of this for us. Thank you!!!

Sterling

 

 

Hi Sterling,

I am 22 and about 9 weeks ago, I got my third pacemaker, a Medtronic Adapta DR model. I also got a new lead.

So far so good. I had a few complications (pain issues, chest cramping) but other than that I am recovering and doing fine. I had my first pacemaker at 10 and I just now had one of the leads changed. So mine lasted about 13 years. For me, the lead change seems to be the worst part. The pacer battery seems to last about 7-8 years
Awww your little baby has a pacer! Do they make them any smaller for babies or are they the same size.
It is so wonderful we are able to live pretty close to normal lives because of pacemakers!!
Blessings to you and your little one!~
Lexi

 

Hi Lexi. Thank you for your response! Max's Adapta is exactly the same as yours - same size anyway. It has a bigger battery than his old one (Enpulse) so they did say it should last longer (5-7 years). Because there is so much growth from baby to toddler and then from toddler to child/teen - we would be thrilled if he got 6-8 years out of them.

Is your pacer epicardial - in your abdomen? I was told that once they move his pacer to his chest and place the leads tranvenously, the system will last longer --- maybe they'll do this when he is 10 or so.

Thank you so much again. I, too, am so grateful for pacers!

 

My pacer is implanted in my chest. Upper left corner.
My pediatric cardiologist decided it was safest for kids to have them implanted in the chest--the abdomen can do alot of movement (twists, turning, etc) and the chest is relatively stable. Just his opinion. Since your child is so young it probably doesn't yet matter.
I like that it is in my chest because of cosmetic purposes and future pregnancies.
Take care,
Lexi

 

Hi, I just wanted to comment that I got an Adapta ADDR01 a year ago, and it works fine. Beyond that there's not much I can add other than you can find the Adapta manuals on the Medtronic website. My situation is considerably different from your son's since I'm rapidly approaching senior citizen status; e.g., AARP and all that. Mine is implanted in upper left chest. I guess its about 2" in diameter. From what I've read about the Adapta it sounds like a very advanced PM technologically. I really can't comment much on how the PM makes you feel as mine is just sitting there most of the time and only kicks in a very small fraction of the time. When I've gotten the reports for "events" I really cannot tell any difference from when its not working. Good luck, you probably have your hands full with him. -Dan

 

Thank you for your comments. The head of the pacer program at Stanford said this Adapta model is state of the art and a really exciting breakthrough in pacers. Hearing your experiences helps my anxiety levels! :)
My son is still too small to have a tranvenous placement in his shoulder -- but his next one will probably be there, when he is 7 or 8. B/c he will be paced for hopefully a long life, they like to use the same spot as many times as possible - so they don't run out of viable placement areas. And Dan, you are right - I do have my hands full - he is an energizer bunny! :)

Sterling