A Longer Journey

This is yet another blog that has been tough to write. I hoped that there would be only good news at this point but that is not the case. On Tuesday after the angioplasty we learned that the narrowing of Joseph's aorta was more severe than hoped. It was not a complete surprise to the cardiologist but it was a tough shock for us. Joseph has been doing so well that we expected that he would come through with better than expected results. It took awhile to get used to the news. The situation is this: The aorta is the large artery that goes over the heart and drops down to the lower extremities. It has three main branches as it curves over the heart that send blood to the brain and upper extremities. After going over the top of the heart it drops down before branching to the lower extremities and most of the organs. It is after the three branches that Joseph's aorta narrows. Just like a kink in a hose the pressure is higher before the kink and lower after the kink. It was thought that the pressure differential was 30 points (about 5 is normal) before the angioplasty. When they did the angiogram to get exact measurements, they found that the pressure differential was 55! It is a great thing that they decided to do the angioplasty sooner rather than later. The normal aorta width for an infant should be about 7 millimeters. At the narrowed point the aorta was shrunk down to 2 millimeters. This was bad news. The ballooning process can only stretch the aorta so much. They were able to get the aorta stretched to 4 millimeters and that was a good outcome all things considered. A 100% improvement! I realize I am being more medical but I hope this is at least a little interesting. For more info on "coarctation of the aorta" click on this link:

http://www.chdinfo.com/aa/aa101297.htm

It has some good info although not all of this applies to Joseph's condition.

Here is a diagram of the heart that shows it better than I can explain it:

The narrowing occurs just about where the end of the arrow is where it reads "to lower body"
<--------- The plan now is to see how the aorta responds. Joseph could be in for another angioplasty or even another open heart surgery. I cannot even get my mind around that possibility. There is also a possibility that the aorta could open up on its own. I am really pulling for the miracle healing of his aorta. We see the cardiologist on December 11 and hopefully we will get some more information then. While I am writing about the cardiologist I wanted to tell a story about him. Mary and I were in the recovery room with Joseph. We had already talked to the doctor who performed the angioplasty and we were having a tough time understanding what the news we received meant for Joseph. We requested to see the cardiologist if he was available. We were told he was very very busy but he would try and stop by. Just before we were to go home with Joseph, the cardiologist walked in. He said hello to me and shook my hand but he was on a mission to talk to Mary. Mary was holding Joseph as the cardiologist walked up to her, put his arms firmly on her shoulders, looked her in the eyes and said, "he is going to be OK--you need to know that he is going to be OK." It was a huge relief to hear him say that, but what was amazing was that he said it so directly to Mary. Even before Joseph was born I learned that the hopes and dreams of our children rests mostly on their mother's shoulders. This is the case in most families. Mothers have an amazing bond with the children. But as well as carrying they hopes and dreams, mothers also carry the fear and anxiety that comes with having children. I am not saying that the dads are not connected, I am just saying that the moms carry it more and on a different level. It was incredibly astute that the doctor knew exactly what Mary needed to hear and it was more powerful that he told her while holding her shoulders. He knows what she has been through and he knows that we have more to come. It is things like that seeming simple gesture that make him a truly gifted doctor. It was a moment I will always remember. Since you made it this far reading the blog I will reward you with a small video of Joseph talking: (OK--it is more of a grunt but it is still fun to watch)

We are still so thankful for all the support from so many. We will never be able to properly convey how much we appreciate all you have done. Please keep Joseph in your prayers and know that you are in ours.

In gratitude,

Kenny, Mary and the kids.