Hi Dennis, my daughter Ruby was born 12 weeks ago with a blockage in bowel, She had her first operation in which they removed part of the bowel and left Ruby with an illostomy.
After the operation the surgeon asked about any CF in our family, which to our knowledge there was not. We had to wait the three weeks for the results and when they came back positive we were devastated, but people deal with difficult situations in different ways, from the off my wife and i reacted in completely different ways, my wife was crying, looking at all the negatives and really down. I was up beat, positive and optamistic for the future.
As the weeks have gone passed i have remained positive and am even more optamistic for the future, and my wife is increasingly positive. She tells me this site really helps her.
In the UK they are soon to be doing a big clinical trial using 100 CF patients which aims to correct the faulty gene by using nebulizers 4 times a year. This will not correct any damage to the lungs but maintain them to a normal level, as if they did not have CF. Obviously they will still have the gut problems, but the gut is not detremental to there long time life.
My outlook is that with daily physio and antibiotics if we can try to keep Ruby lungs in as good health as possible, by the time she is 5, 10, 15 or even 20 there will be something concrete - maybe not a one off cure but i am sure the gene therapy will be available. People may tell you and tell me that gene therapy is a long time away - but imagine what medical advances they have made in the last 10 years. And in my heart of hearts i believe that by the time Ruby and Erin are 10 this will have happened.
Three weeks ago we went back into hospital to have the illostomy closed, the first operation was a simple connection back of the two ends, however, there was still muconium blocked in her bowel, so she needed another operation, they removed this blockage and reconnected, this time the operation was a success. We had two bad weeks in hospital, I know it was CF that caused these problems, but whilst i was in hospital i put CF to the back of my mind and simply concentrated on the bowel and getting Ruby better.
We are now all home and Ruby is doing really well.
Your doing the best for your family holding down 2 jobs . You should be commended for this. Once Erin is back home you will feel 100% better and you will get some normality in your life
I wish the best for your family If you want to e mail me at nstead@bored.com
Nathan
