Taylor is now 11 weeks out and on June 6th, which is about 10 weeks out from surgery, Taylor started "thumping". Basically, Taylor can feel her heart beat very strongly in her chest and sometimes in her belly. Being this happened on a Saturday; we had a hard time getting a hold of people to help. Since Tallahassee doesn't have a BOARD CERTIFIED PEDIATRIC CARDIOLOGIST, I rely on Shands to help in these situations. I emailed all the doctors a video of what it was doing so they could kind of see it. Dr. Fricker responded pretty quick but it still took till 10:30 pm to finally talk to someone. As you can I was very concerned even though Taylor didn't act as if it was bothering her, it just got her attention every time it happened.Monday, June 8th, we went to Jacksonville for them to see it. Of course it didn't happen on its own. They started questioning if Taylor was around magnets, new electronics, or anything else that could have made the pacer setting change. Once they hooked her up they could make the "thumping" happen and realized the pacer settings hadn't changed and after several hours of being there they came to the conclusion that it "might be the leads". So it was either a magnet, the leads, or the pacemaker had an electrical leak but they wouldn't know for sure unless they went in to see. All 3 conclusions was in a matter of an hour and 1/2. Talk about being confused!
They hooked her up to a heart monitor for 24 hours to see if it is affecting her heart when it happens. I automatically thought that it wouldn't do anything because it’s being watched. I was wrong. It happened 7 times in the 24 hour period. I shipped it back to them the next day but when I got a phone call and they said that the battery in the monitor was no good and it didn't capture and all I could say was..."ARE YOU KIDDING ME?"
My next step was emailing them and I mean it was all day of emailing. In the first email back from the doctors it said that Taylor's leads aren't bad enough for surgery but aren't good enough to bring down the pacer settings to save energy. Then the last email from them was that we will talk more about it in clinic on June 17th but they would see about adjusting the thresholds of the pacer. That last email confused me because in the first email he said they couldn't adjust the settings. UGH!
Finally, Dr. Fricker called me and we talked for a while. I expressed my concerns and my worries. It made me feel a little better but not really. I know he cares and loves her like he does with all of his heart kids but we could be looking at another surgery that would be completely unnecessary if the leads would have been changed out this last time. Dr. Fricker said that it was the connection of the leads on Taylor's heart that was causing the problem, which makes me even more worried. This was an overnight change with the connection and what will happen if there is another overnight change? We went to Boston in May 2008 and their suggestion was to move the pacer under her arm which would have meant the leads would need to be replaced. Jacksonville didn't think that needed to be done but up until an hour before surgery we thought they were doing what Boston had suggested!
So tomorrow is our appointment and I am worried, anxious, nervous, scared, relieved and so many more mixed emotions. I haven't been able to think clearly since this began. I know they will say she is fine and it isn't affecting her, but is it? Maybe not physically but it has to mentally. She is being reminded everyday several times a day that she is a heart kid and feeling "thumping" isn't a way that any kid should live. While she is a camp she is writing down the time and what she is doing when she feels the thumping. The poor little girl. I hope tomorrow will give us more of an insight. I have also contacted Boston to get their input on things so I will be very interested to see what they have to say also.
I will update as soon as I know something.
