Thursday, December 11, 2008

Cardiology Update

Just a quick update to let you know about our visit to Greensboro.

Aside from torrential rains on the way there and home, not to mention 8 hydroplanes (thank goodness for AWD), the visit was a good one. Sam's defibrillator is working as well as it can in his little body, all the numbers were good. His heartbeat obviously still looks different from a "normal" heartbeat, but it keeps his body alive and this is only a problem when it comes to the sensitivity of the device. In case you didn't know, his R and T-waves are backwards - and unless you know something about hearts, this won't make any sense to you.

Sam did great as three different doctors listened to his heart. Then Dr. Buck used leads and connected him to the "interrogator." I love that name. It's this laptop device that has a magnet connected to it and can read everything that his defibrillator has recorded for the last three months. Great invention.

We learned that one of the residents who treated Sam after his febrile seizures is going to publish a paper in a medical journal about complex febrile seizure and Brugada Syndrome, along with Dr. Buck. Of course, Sam will be anonymous, but I have asked for a copy so I can post it. It sounds like we are really getting out a lot of information about Brugada - which is one of the points of my blog, but I have also made it clear to Dr. Buck that anything we can do to help - count us in!

Also, we learned that they have still not located the genetic marker that carries Sam's particular form of Brugada. It may take them years to locate it, since it wasn't on the normal three genetic markers that only 20% of other Brugada patience have. We'll continue to wait for that.

I believe that is all. Please let me know if you have any questions. I'm exhausted and don't think I'm making sense.

1 comment:

beckarecka said...

So glad that all is well! What a trooper Sam is to see so many doctors during one of these visits! Also....for being exhausted, you explained it all seemingly well. :)