New arrythmia concerns

[meghane813]

My 8-yr old daughter is over 3 yrs out from her last open-heart surgery, a mitral valve re-replacement, aortic valve replacement/konno procedure. She is recently having issues with arrhythmias that are new to her, aside from her usual SVT. We are of course able to hear her valves click, and nowadays, she seems to be having issues with PVCs, and abnormal rhythms, very bradycardic in nature. She is currently hooked up to an event monitor, has had on for 1 week now, and I have needed to transmit many times. She has had complaints of dizziness and neck pain a few times with these occurrences.
I am a pediatric nurse, my husband a firemen/paramedic, but I'm a heart mommy first. I know with open-heart surgeries, arrhythmias can occur, but why after 3 years is all of this starting, on top of the SVT? She's got a few cardiologists looking into things, but I am so on-edge. Do I need to stop worrying so much??? I just feel that I am not getting the answers I need, like I am not being heard! I would think I would have it all put together in getting my questions answered....

 

[meghane813]

Ok. I guess this is not the place to try to get answers. I thought maybe some adult patients who have had arrhythmia issues would be able to help give me some peace of mind...

 

[Sarah_Louise]

Sorry cant help, but I'm sure someone will be along soon with help/advice for you,
Thinking of you both xxxxxx

 

[kfay]

I don't have your child's same heart defect, but am a congenital heart patient. I have had many arrhythmia issues myself since my last surgery almost 4 years ago. I was having almost pac's exclusively for the first 2+ years and then last year developed pvc's, atrial tachycardias and bradycardia. I don't think it is uncommon for people to develop new rhythm issues years down the road after heart surgeries. I also wonder if her growing has any bearing on what is going on with her. After 2 ablations and countless meds, I finally started taking Flecanide, which has taken care of most of my rhythm issues, other than the bradycardia. Hopefully the event monitor will give her Dr's some idea of a direction to go in.