Mom worried

My little girl is 4 yrs old she has had her pacemaker since she was 18 mo. She is 100% dependent. She has to have a battery change on July 9th and I am very scarried. i know it not just a battery change i know the change the whole machine. But if anyone can tell what to expect so i can help her that would be great. Any advice please.
thank You
worried mom

7 Comments

we are all with you

by aldeer - 2008-06-26 08:06:38

I can't tell you what to expect, but I do know that our love and prayers will be with you and your precious little one.
aldeer

Hang in there!

by ela-girl - 2008-06-26 09:06:50

Hi, jackson!

As aldeer said, we will all be sending out good vibes your way July 9th! One thing you can rest assured in is knowing that your daughter is in very capable hands. You said that she is having a battery change but then you say they are changing the whole machine?? Well, I'm not quite sure what you mean...are they adding new leads, too, because of her growth? If not, they will just unhook the leads from the current generator (where the battery is housed), pop in a new generator, and hook the leads back up to the generator. That would be fast and simple and is considered a "stand up surgery" because it's so fast! And recovery is faster if this is the case because you aren't waiting for new leads to become entrenched into the heart wall so that they can't become dislodged. So, I hope this battery change is just that for you!

ela-girl

Pacemaker replacement.

by Stepford_Wife - 2008-06-26 10:06:32

Hi jackson.

I found this very simple explanation of the procedure involved from The Children's Hospital in Michigan, Congenital Heart Center.
I hope it helps you explain to your little girl what will happen.
Best of luck to her, I'll be thinking about her July 9th.

~ Dominique ~

Pacemakers

A pacemaker is a tiny computer, about the size of a silver dollar, that helps kids' hearts know when to beat. Kids get pacemakers because their hearts don't beat fast enough when they need them to, so they are tired a lot.

If you need a pacemaker, the doctors will put it either under one of your collarbones or under the skin of your right or left tummy. First, you get some medicine that makes you fall into a deep sleep. Then the doctors make a small cut to make a pocket to put the pacemaker in and from there they move the pacing wires up into your heart. This is done in the cath lab or in the operating room.

The wires give off tiny bits of electricity that tell your heart when to beat. The pacemaker will make your heart beat faster if you are running around and slower if you are resting. You will have more energy than you used to because the pacemaker will tell your heart when it should beat to keep up with you.

Once you get your pacemaker, you will come to the clinic every six to 12 months for a check-up. You will also be asked to send in transtelephonic EKGs every one or two months depending on how old the pacemaker is. To send in a transtelephonic EKG, you place a little monitor on your chest, turn it on and wait for it to start making a regular beeping sound. This sound comes from your heart beating. Then you put the phone over the monitor and your EKG will print out on a printer in the EKG lab. Next you put a special magnet over your pacemaker and transmit again.

Pacemakers last about 10 years. When the doctors find out that your pacemaker is low on energy, you will have to come back to the hospital to have it replaced. The doctors usually reopen the same cut and simply take the old pacemaker out and put the new one in its place.

You should be back home in a day or two, good as new.

TELL HER THIS

by peter - 2008-06-27 04:06:18

What do you tell a sweet little 4 year old girl who is becoming more aware of the world around her. I would say this.
Sweety, when you were born at the hospital there were some wonderful doctors and nurses at the hospital who gave you a really nice present that kept you feeling great. Those lovely people at the hospital now need to give you another one. So we are going in to see those wonderful people who were so kind to you to get a nice new one. Its about the size of a big sweet and they just need to put in under your skin to keep you feeling well.
Mummy is going to come with you so that we can both look forward to this special day. Lets put some crosses on the calendar each day that we can see how many days we have to wait before we go to get your lovely new present.
Cheers Peter

Rest Assured

by shockbox340 - 2008-06-30 09:06:09

When devices are changed in pacemaker dependant patients, the physician will normally put in a temporary wire that is connected to an external pacemaker that takes over while the change-out is performed. In adults, a change-out with no lead issues is a very simple procedure, but in pediatric patients the doctor has to decide if the lead (or wire) has enough slack left to accommodate the upcoming growth of your child. So, don't be at all concerned if she gets a new wire or two in addition to a new pacemaker, or the doctor may decide that can wait until next time.

Bottom line, these procedures are very straightforward. Don't be scared. Even if they discover a problem that wasn't expected, would you rather have her anywhere else when it is discovered than right there under the doctor's care where he can handle it immediately? Just don't let your daughter guilt trip you for too much ice cream afterwards! ;)

Scary but not too bad

by slarnerd - 2008-07-03 02:07:00

I know how nervous you are. My son is almost 2 and got his second battery/generator and leads a few weeks ago. He is completely back to normal now. He was off all pain meds in less than a week, only on motrin after 1 day. He was playing and sleeping and eating normally within 4 days. He was very uncomfortable for the first 24 hours but was given pain relief and mostly slept - we went home a little more than 24 hours after the surgery. If your daughter is only having the battery/generator replaced and not the leads, healing will be even easier. Taking some dvd's to the hospital for him to watch was a huge help. For my daughter who is 3 1/2, we bought a few books from amazon.com about going to the hospital and having an operation, they really helped her. One is "Franklin Goes to the Hospital." Another is "Going to the Hospital." One is about having an ear operation and we just substituted "heart" for "ear" when we read it. Also, your children's hospital should have a "Child Life" office that you can call in advance of the surgery and they will give recommendations on preparing your daughter and making her more comfortable after surgery.

You may want to join the parents yahoo group for kids with pacers and/or heart block.
http://health.groups.yahoo.com/group/heartblockkids/

Best wishes!!!

Sterling

Tomorrow's Surgery

by Laurel - 2008-07-09 03:07:26

Hi,

I just discovered this site and wish I had earlier. My five year old daughter got her pacemaker when she was one day old. She was born with a complete heart block, with an underlying heart rate of about 55. 2 years ago we went in for our routine check up and was told that her pacemaker had stopped working and need to be changed. The changed the battery and the lead. Not knowing how she(at 3) would handle the surgery, I almost lost my mind. Her surgery went well. The first 24 hours was rough because of the pain but she was out of the hospital in 2 days....and went back to preschool in 2 weeks. It's truly amazing how strong kids are. All the best...I will keep you in my thoughts today

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