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Aug 19, 2016
Thank you for coming here to support Cody through his journey with Cystic Fibrosis. Cody was diagnosed with CF when he was 1 1/2 years old. We created this site to help our family and friends keep informed about Cody's health and this disease which affects over 30,000 children and young adults in the United States.
Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body breakdown and absorb food. Cody is affected by salty-tasting skin, frequent lung infections, poor growth and weight gain in spite of having a good appetite.
More than 10 million people are symptomless carriers of the defective CF gene. To have Cystic Fibrosis a child must inherit one copy of the defective gene from each parent. Even then there is only a 25% chance that Cody would have the disease. Therefore he is a very special child ;).
About 1,000 new cases are diagnosed each year, more than 70% by age two like Cody. More than 45% of the CF patient population is age 18 or older and the predicted median age of survival is 37 years. When Cody was diagnosed the survival age was 21. To combat the effects of the disease Cody takes enzymes with his food, two different oral antibiotics each day, high doses of ibuprofen (so he never has a headache ;) ), natural herbs, vitamins, in addition to taking inhaled medicines each morning and night though his breathing machine. He also does vest therapy two to three times a day where he wears a vest which inflates with air, which shakes him for 30 minutes each time. This helps to keep the mucus in his lungs loose in the hopes he can cough it out or absorb it more readily into his body so it does not have time to grow bacteria. In addition we decided when he was 8 to have a feeding tube put into Cody's stomach through which we do nighttime feeds. This helped his growth tremendously. He lost it once when cliff diving into Lake Norris in Tennessee. But after going through the surgery of reinsertion the Doctor asked Cody if it was all worth it and he just smiled and said "Yeah". It fell out once again when he was 12 and because we could not get it reinserted in time, we made the decision to not put him through the surgery again which he said was the most painful thing he has ever done.
Cody also has a port installed which allows him to be hooked up to IV antibiotics at any time. We did this years ago when he had such a fear of needles. However, nowadays when he has to have blood drawn he swears it does not hurt and he watches intensely.
Although this sounds like intensive therapy each day, since we have been doing it since he was a baby it is really just a part of our daily routine. Just as most of us know that too many McDonald's hamburgers may give us high cholesterol in the future, we know that disrupting Cody's routine results in lung exacerbation's which results in lung scarring and a shorter lifespan, or closer to a lung transplant. As a mom I only hope Cody continues his daily therapy into his teenage years and beyond when mom is not hovering over him, just as any mom hopes her children make good life choices.
Cody and I figure he has been in the hospital over 60 times in his life. For a few years we would be admitted about 4 times a year. Cody has a tendency to grow normal staph infections which many of us come into contact with every day on counters, doorknobs and many household items. Unfortunately it is more dangerous to Cody. It is a normal part of our environment and our immune systems fight it off much better than Cody's.