Followup Appointment recap

We had our followup with both the Surgeons and also with the Electrophysiologists on Wednesday. Surgery group thought all looked great with Audrey's healing. They removed the remaining tape and it really has healed up nicely. There are no stitches, clamps, or anything else remaining there. We are officially done meeting with that group for now until the next time the pacer needs replacement. They have said on average that the battery lasts about 5 years, at which point we will have to replace it with a new unit. They will only need to replace the unit itself at that time and the leads going to the heart will stay in place and be connected to the new pacer so it will be a less invasive procedure then.

The meeting with the EP's was what we were looking forward to so that we could see how her heart was doing. They both did an ekg to measure the rhythm and they collected all the data from the pacemaker about how her heart has done since last week when we left. Audrey's QT interval still measures long on the ekg even with the medication, somewhere in the 500 millisecond range. Anything above 440 milliseconds is considered prolonged. After birth Audrey's interval was up in the high 600's to 700 millisecond range so the medicine has definitely helped to shorten it a good amount. The good news is that the pacemaker helps to keep her rhythm normal despite her long QT interval. We were able to see a lot of the downloaded information from the pacemaker and overall the stats were really good and was about the same as when we left the hospital last week. We were relieved to see that nothing unexpected was occurring that we weren't able to see at home. Her heart was staying in a sinus rhythm right around in the 120-130 range. Things were good enough that we aren't going back for our next followup for 4 weeks. In the meantime we will be able to upload the information from Audrey's pacer through the phone line that they can view.

There was one conflicted feeling I left with. Audrey's case is so high profile and rarely seen that all of the doctor's were involved, some much more than others, but all were aware of it at least. When we are there it's like we are celebrities and they are all so extremely nice and stop by to see us. Everyone from the big group's chief of cardiology down to all of our specific cardiac doctors came by and said Hi. They were really glad to see that both she and us were doing well and one even told us how our story was being told in some fundraiser events with donors. On one hand I have welcomed as many doctors opinions as possible during our journey, especially with it being a rare diagnosis. On the other hand, just as things were starting to feel somewhat better and normal (as much as it can), having all of those doctors come by was just a reminder of how rare Audrey's case is and makes us feel that the odds are not on our side. We left feeling really good and relieved about how Audrey is doing and the care she is getting but just a little conflicted at the same time.

- Mark