HI AGAIN IT'S RYAN'S MOM...COULD SOMEONE PLEASE HELP ME WITH A QUESTION???
RYAN HAD A BOSTON SCIENTIFIC PACEMAKER/DEFIBRILLATOR PUT IN ON NOV.10TH 09, IT LOOKS SO HUGE IN HIM, RIGHT NOW I FEEL LIKE THE WORST PARENT EVER THAT MY SON WAS BORN WITH A HEART PROBLEM THAT RESULTED IN HIM LOOKING SO BAD..... IS THIS STILL ALOT OF SWELLING IN HIS ABDOMAN OR IS THIS THE TRUE SIZE OF THE PACER?? I DON'T KNOW IF THE DIFIBRILLATOR MAKES THE PACER THIS MUCH BIGGER. HE IS STILL SOME SWOLLEN BUT IT SEEMS TO BE GOING DOWN IN HIS STOMACH AREA WHICH IS WHERE THE PACER IS...IF ANYONE HAS A PACER LIKE THIS COULD YOU PLEASE HELP ME !!

THANKS, CHERYL

 

 

Sorry to tell you this, but defibrillators are always a lot bigger than pacemakers alone.
Right now it probably is still swollen as it will take a few weeks for things to settle down, but I'm afraid that YES the ICD pacemakers are much bigger than what he had before.

 

Everything you hear on this site is people's personal opinions. They may not relate your circumstances, so I guess you go back to your doctrors. I have had people on here saying to me, I will go to private chat and contact me personally. I know what it is all about.

The reality is that they will send you a couple of e mails.

Me personally, I do not know.

 

I have a boston scientific pacemaker, not a defibrillator, and it is pretty small. I know the defibrillators are much bigger, but most of the swelling will go down in time. It swells a good bit. I had mine placed in July, and just now, I am noticing the swelling has almost gone away, but it does take some time. Just let him know it will not be so swollen after a few months. It will take time to heal, after all it is a major wound, especially on a child.

 

Hi Cheryl,

I have a Medtronic ICD/PM and it is located just below my left collar bone. It is big but has not been an issue for me as I normally have a shirt on. When I take a shower at the gym sometimes someone will notice it and remark it is bigger than they would have thought.
Hang in there. Hopefully they will get smaller and more efficient as time goes on and the technollogy improves.
You certainly are not a bad Mom and obviously love Ryan very much. It is only natural that you feel his pain and wish you could change things. Sounds like Ryan is a tough young man and a blessing to you and yours.


Mike

 

It is far too soon to determine how much Ryan's new ICD will show after only 9 days. You have to give time for swelling to subside. As several others mentioned, an ICD is larger than a pacemaker as the ICD has all the same electronic hardware as a pacer plus additional circuitry and two large capacitors which hold the charge for defibrillation therapy. The good news, Boston Scientific lays claim to the smallest physical size for their ICD's, however they don't spell out the size on their web site other than 9.9mm thick. I have seen Boston Scientific pacers and ICD's in my Cardio's office and I can guarantee they are much smaller than my St Judes model.

Stop beating yourself up over a medical issue that you had no control over. Children are resilient and if their parents don't focus on issues like this, they lead normal lives and think nothing of the fact they have an implant. No matter how hard you try to hide it, Ryan is going to sense your attitude and it will affect his. Be thankful for what you have

 

I apologize in advance if this sounds harsh, but your sentence about him looking bad makes me cringe. Kids generally deal with health problems a lot better than their parents but he's going to follow your lead. If you're freaking out and think he looks awful, what is he supposed to think? Please vent here all you like to get it out, but when you face him you've GOT to be strong and positive. He can come through this ok, or he can come through this with emotional scars to go along with the physical ones. A lot of that is in your hands.

Unless you did something to risk your pregnancy, it's not your fault. No one is to blame, life is never perfect. I was born with my heart problem also. It's just a fluke, I can't even blame genetics. I sure never considered blaming my mom! And I'm sure Ryan doesn't either. I've had my moments of anger, etc over the years, but mostly I learned a lesson young that a lot of kids learn hard much later- that life isn't always a bed of roses and you don't always get what you want. I think it's made me a stronger person, helped me grow into a happy well-adjusted adult. Something good comes of everything, sometimes you've got to look a little harder to find it but it's always there.

Just tossing this out there... consider volunteering at Ronald McDonald house or the childrens hospital where Ryan had his surgery. You may find it healing to give back, and I know it will help you put things into perspective. There are a lot of parents who would give anything to trade places with you.

 

both my children are heart patients and both have pacemakers. yes, my little girl has one that sticks way out of her tummy - we should talk. maybe even on the phone. to help you calm down. "It is what it is" there is nothing you can do now but be a damn good mom and an even better advocate for his health in the hospital. there's nothing you did, if you think you feel bad...check this out...i'm the one with the heart problems and now my two children were born with heart problems because of a genetic defect I carry....but we checked with docs before I got pregnant and there was not enough evidence - not one doctor said I would have a heart baby. it is what it is. I've never loved them less. and they are AMAZING kids. your boy will grown into his pacemaker. turn the negative around. he's alive! I've watched my kids have 16 heart surgeries. and I rejoice every day - I'll take every scar and every bulge of their pacer sticking out because they are here with me and happy as can be. you'll get through this. :)

 

Hey Ronaldo, What's the matter? Did the puppy crap in your Cheerios this morning? The reason I ask is I see you are kind of down in the mouth again. This time you are taking a shot at denigrating everyone that tries to answer questions here. That is not a good way to influence people and win friends.

 

Yes, ICD's are quite a bit larger than their PM counterparts. My Boston Scientific is around 3"x2.5"x.45". Kids do tend to be more receptive, since that's probably all he has known all of his life.

Once he get's older and if he becomes more self-concious about the implant, they are getting smaller and they can implant it so that it's not visible (under the chest muscle instead of just the skin).

 

The Lord gave Ryan to you for a special reason. Ryan is a typical young-un' who is a "tween" and not yet a teen and will grow up all okay. Other students/peers/ freinds will have their own "differences". Some will be diabetic, some have heart problems and some other types of different dealings. Ryan will blend right in.

Bless you, Ryan's Mom and your families for being such a concerned parent and wanting the best for your son. Take a deep breath, relax and Ryan will deal with his future just fine. Ryan knows you will always be there as his Mother when he needs you.

We lost a daughter when she was 17 to another type of situation. We would give anything if we had her with us today, no matter what defect/illness and or handicap.

Ryan's Mom: You are blessed as is Ryan. Relax and let Ryan become the great teen-ager he will become. Ryan will deal with his own daily life by himself.

You, Ryan and your families have a great Thanksgiving and give Thanks for ALL your blessings ~
Carolyn G. in TEXAS ( :

 

Did not mean to come across like that. I have had a couple of private e mails that have been very useful/supportive etc. Just saying that in the end it comes down to the doctor/cardio etc and what they say.