Today’s visit with the cardiologist went about as good as we could have asked for. The appointment was primarily made to give Sherry and me some clarity on the future repair to be done on Caden’s heart. The largest piece of information that we learned was that we have been working on misinformation for a while. Sherry and I both were led to believe that Caden had an outstanding ASD to be repaired in the future along with a bicuspid aortic valve that is also small in diameter.
The ASD is no longer a concern. It was actually repaired during Caden’s original surgery on 11/8/04. I confirmed this by combing through some of Caden’s records tonight. Sherry and I both are certain that the cardiologist told us back in May that the ASD was still in need of repair and that the Interrupted Aortic Arch and the VSD were the only defects repaired during the initial surgery. The meeting today was by far the most productive meeting with the cardiologist in a while. I believe that Sherry and I both were more in tune with the conversation than ever today. In the past our thoughts have been clouded with other pressing issues and emotions related to immunology, swallowing, and reflux. All those conditions have not vanished, but have become much better managed and understood by both of us. I apologize for the confusion, but the only thing that we really have to worry about with Caden’s heart for now is the aortic valve and that is not time sensitive. There is a chance that the valve could need replacing in the future, but there is nothing to worry about right now. We will proceed with six months or more between cardiologist visits until they determine that action is required. That initial action could be a trip to the cath lab or it could be a trip to the operating room. We have no way to know right now. They estimate that it could be years before they need to address the flow restrictions caused by the bicuspid valve and its size. The cardiologist referenced Arnold Schwarzenegger who had his bicuspid aortic valve corrected surgically about ten years ago. We all know what his physical accomplishments were and they were all done with a bicuspid aortic valve. Caden’s case is by far not the same situation, but at least I hope that tidbit of information helps put into perspective how a person can function with a bicuspid aortic valve.
In other news, we are headed to Greenwood, SC next week to visit a genetics clinic. This clinic has been mentioned to us by three separate people in less than a week recently. We have known about it for a while, but just have not had a chance to make the trip up there. We hope to gain some information about who can help us deal with some of the areas of Caden’s care that we feel are not as strongly serviced by MUSC.
Happy Birthday Hailey!!! You are looking great. We wish you and your family the best.