7 yr old getting PM.

Hi there,
My daughter will be getting her PM on Tuesday July 29th.
She is unlike I think pretty much everyone here. Her heart is actually fine. Her problem is autonomic (sp) She was born with a condition called Central Congenital Hypoventilation Syndrome. In a nutshell, she doesn't breathe while she sleeps. She had surgery for a trachesotomy at 9 wks of age and she sleeps with a ventilator. The message to breathe while she sleeps just doesn't get through. We have recently found out that her heart is having short pauses as a result of the message to beat isn't getting through.

I hope that all of this makes sense. She is deemed ventilator dependant, but she is not PM dependant. (whoohoo Sarcasm)
She will have the PM as purely a backup, a preventitive measure. It seems that as the children with her condtion get older the pauses can happen more often and for longer amounts of time.

Like I said her surgery is on tue. She is getting the PM placed under her rib cage. I can't remember the name of the procedure.
So I am looking for any kind of idea of what the whole thing will be like. Surgery, recovery, life with a PM.

I should note that my daughter is a very healthy little girl. She is not on the vent during the day and runs around like any other 7 year old. Developmentally is appropriate for her age as well.

TIA

Tess

2 Comments

good luck!

by Tracey_E - 2008-07-27 10:07:56

The surgery is pretty easy. It's usually done outpatient, or at most one night stay. I'm not familiar with the rib cage placement but recovery should be short. She'll need to be quiet for the first day or two so the leads have a chance to settle. After that, it's just a matter of waiting for the incision to heal.

Every day life, it really doesn't make much difference in mine and I don't really think about it. I take longer getting through the airport. I can't arc weld or work in a junk yard (big magnets are a no-no). I can't have an MRI. I get the battery checked every 3 months and replaced every 7-10 years. Hers should last a long time because she won't be using it all the time.

I was diagnosed as a child and now I'm a mom. I can tell you it'll be a LOT harder on you than it is on her. My mom always worried a lot more than I did. I didn't know enough to worry, it was just my life. Kids are resilient and they bounce back quickly.

she will be fine!!!

by hailey123 - 2008-07-29 12:07:50

hey tessymac, my name is hailey and i am 13 years old and i had my pm implanted when i was 4 years old...

even though i have a PM i am a ordinary kid i am on a dance team and i teach dance to little kids... i do have to sit down and rest every once and a while but other then that i do everything every other kid does...

DONT WORRY YOUR DAUGHTER WLL BE FINE!!!!!!!
she will bounce right back...

i had my 2nd PM implanted in 2007 because i had a loop in one of my wires... but anyways i had to go all the way to boston MA and i live in KY!!! because in kentucky they dont have the tools to fix it but i never let my pacemaker get me down :)

You know you're wired when...

You’re a battery-operated lover.

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