I'm so glad to hear little Kaden is improving. I check for updates on your blog often.
The fact that they are turning down the pacemaker is very encouraging. Luke experienced the irregular heart beat issues also. They left his external pacing wires in extra long because of it. It is my understanding that this is a very common issue when the child has a ventricular septal defect (VSD).
A surgeon explained it to me like this. The ventricular septum is the wall that separates the bottom chambers of heart. Kaden had a hole in that wall so the surgeons sewed in a patch to close it. The tissue where they sewed the patch holds the heart's "electrical system" which "sparks" to signal the heart to beat. The stitches can interrupt the electrical signals which causes the irregular heart beats. Sometimes the problem is resolved on it's own and sometimes with medication. In some cases the child will get a pacemaker. The problem can still resolve itself after a pacemaker is installed and then it will be there just as a back up. In Luke's case they did decide to remove his pacing wires and he went home on a medication called propranolol. He took that medication for six months and then discontinued it after two successful 24-hour holter monitor tests. He has not had any known arrythmia (irregular heartbeat) issues since.I
f there is anything I can do or anyway I can help, now or in the future, please do not hesitate to contact me. You are all part of our "heart" family now and we are here if you need us.We will continue praying for your family and little Kaden's. God is awesome.
Mom to Luke - TGA, VSDhttp://babyluke.wordpress.com