My daughter is 4 and had her pacemaker placed in April 09. She has done so much better with her pacer. She used to pass out 6-7 times a week. Her heart was struturally normal at the cardiologist so he ordered a Holter Monitor and after 2 days she passed out again while getting out of the car. The monitor showed that her heart stopped for 30 seconds. They tried medication but she was allergic to it. Then they placed her pacer in her abdomen. It is a dual chambered epicardial pacer with a high and low setting plus a drop setting (if her heart rate drops suddenly it will start pacing). She came home from the hospital after a week and still had fevers. They called it Post Pericardialotomy Syndrome. We live an hour and a half from the hospital. Our daughter got sicker and sicker andafter three visits within a week they told us to come back on monday if she didnt get any better. On monday 2 weeks after her surgery we went and the dr ( a resident not our cardio) was going to send us Home. I refused to leave and he finnaly called another dr who came to talk to us. I told her what had been going on and how Krissy was green colored and she didnt even open her Easter Basket. She was reluctant to do anything because krissy was smiling at her and walking around. Finally I told her I wasnt leaving till she proved to me nothing was wrong. She finally sent us to the lab and then for a echo. During the echo we had numerous doctors in there. krissy had cardiac tampanade and had to have emergency surgery. After 2 hours and numerous pokes by a pretty much all the staff in the cardiac ICU They put an IV in her neck and did the surgery bedside under just sedation. She had a drain for the next week and ever since she has been fine. The Preschool is a little weary but we make do. She is very active and loves hiking here in the mountains. We do a lot of camping and if we go any high than 10000 ft she need O2 but other than that all is well.

 

 

Good for you for sticking to your guns with those doctors! You can't beat a mother's intuition. I'm so glad to hear Krissy's doing good. Poor little baby.

 

Hi Krissysmum,

Welcome to the Pacemaker Club.

Kudos to you for insisting on help for your daughter. Now, I have a question. Considering your daughter's diagnosis is cardiac tamponade does the doctor say she really needs a pacemaker?

 

How can I ever belly ache about anything again after reading what this little trooper has been through?
Thank you for putting everything into proper perspective for me! LOL
I am so glad your daughter is doing so well.
Wishing you & your family many blessings & good health!!
Liz

 

Krissy only had the Cardiac Tamponade due to the pacemaker surgery and opening the pericardium. In a span of 6 months after her surgery her pacer has gone off 284 times. She had her tonsils and adenoids and ear tubes (2nd set) this past month and they whole time she was on the monitor her pacer was going off. Her original diagnosis of Sinus node dysfunction is still correct. I guess a percentage of patients that have the pericardium opened get the post pericardialotomy syndrome and the complications can be tamponade. Just our luck. Krissy has also had kidney/bladder surgery. She just seems to fall into that 2 or 3 % of people that have bum luck. SHe is very healthy now and I love her so much. With the pacemaker there is no more falling out of her chair at the table or down the steps of the bleachers at basketballgames. She just keeps going like the energizer bunny...

 

LIke the others said before a mothers intuition is the best and I am so happy to hear your little trooper is doing well. Hugs and prayers are going her way!! Carol

 

You might want to look into a support group sponsored by the American Heart Association for children called Mended Little Hearts. They're a great source of support and information and can help Krissy on her journey. It sounds like you have a healthy perspective on a difficult situation but these guys can work wonders and provide your daughter with friends who share her challenges.

Good luck to you and welcome to our family

 

Hey, dont think i have spoke with you yet on here! but my name is Hailey and i am 14, i also have a pacemaker - and better yet i had my pacemaker implanted when i was 4 as well. but i have LQTS Long QT Syndrome. basically my heart cant figure out if it wants to beat extra extra fast, or exxxxtra slow. but i would love to chat with you. pm me sometimes (:
¢¾ haileey

 

That is an amazing story and takes me back. I acknowledge you for sticking to your gut feeling. I too had one of those "mother knows best"moments. My daughter Mary was sick with the "flu" for a week and was getting closer to death every day. I had always noticed her heart rate at times would be very fast and then it would be normal. When she was born they noticed the fast heartbeat and took her right out but in childhood, it was a non issue for the doctors..When she was five and after a week being laid up in the house and being told by the pediatrician that it was probably just a flu, I decided to take her in to the pediatricians office. We went thru the visit and right before I was told to leave I decided to suggest the doc look at the heartbeat.Just to check.. Well ten minutes later we were on the road to childrens hosp in san diego. She was put on life support within the hour she entered and within 24 hours we followed her up to UCLA in the car as she was airlifted there. She was on ecmo for 30+ days. The doc in san diego could not get her arrhythmia so for the next two months we had three more tries before we came home with a pacemaker and her own heart. We are still on the "list" but to walk out of there with her own heart and me back to our home was amazing. People are dying there, and we walked out. It is a story I wish for all who were there but we do not all make it out. Congrats to you for your mother instinct. It seems we do know best sometimes..Cin

 

Gosh, what a story. Never ignore you gut feeling. Its there for a reason. You can usually tell a Dr. what is wrong with you, the problem is getting them to listen. Just before my sudden cardiac death I wrote out my will and sent it to everyone and i told the Dr. that there was something wrong besides what I was in the hospital with... his reply ...I don't have time for this. I could not believe he said that. However the next Dr. I spoke with was better. She listened and ordered an echo but for some reason they did not come and do the test when they were supposed to. The next day I had complete block and died but they shocked me back. If someone has paid attention to me and listened I might have been spared that pain.. Make them listen to you when you have concerns. Anyway May God look after you and your precious little one.

 

i wanted to also give you kudos for being your daughter's warrior....go mama! I firmly believe in the power of a mama's intuition. My daughter was diagnosed at 2mos. and paced at 2yrs. old....I found a group on yahoo groups called heartblockkids that has many parents of children with heart issues, paced and non-paced. Check them out some time.