Cystic Fibrosis

Today, we found out that Rowan has Cystic Fibrosis (CF). This is a genetic disease that is incurable that causes problems with proper nutritional absorption and lungs. The average life expectancy is currently about 36. They have made a lot of progress in dealing with this disease in the last few years and it is likely that as time passes, that expectancy will rise as well.

The real issue at the present is that with CF comes high strain on the lungs. For the heart repair surgeries to work, Rowan needs strong lungs. There is one case we could find of another kid with CF and heart defects. They were able to complete his repair with some modifications for the lung problems. That said, there is a possibility (no, we don't know what the chance is) that he will not be a surgical candidate. Surgery is his only choice. If a surgical center will not accept him to operate, we are out of choices.

In our favor, he is not showing any signs of CF yet. He also has genes that mean that he has a milder form of CF and it may not impair his quality of life as much if we can get his heart repaired.

This is pretty much hell, but I think we are so exhausted at this point, we just feel numb.

Our insurance approved St. Louis Children's as a potential program for Rowan. Tomorrow the doctors here are going to call and try to get that hospital to accept Rowan. I'm hoping that they will give him the chance we so desperately want for him.

Keep your thoughts with us. For now we are going to try to get some rest so we are ready to face whatever tomorrow brings. We don't really have more information at this point, so we will share more when we know more.