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Posted on April 05 2016
Over the next month we waited for Emerson to recover. He was fed through a PICC line in his head (a more sturdy version of an IV) and was routinely X-rayed, swabbed, poked, and weighed to make sure that everything was healing the way it should. Around week 3 he had finally gained enough weight to do a sweat test, the gold standard in CF testing. On November 16th we found out for sure that yes, Emerson has cystic fibrosis.
Cystic fibrosis is a genetic disease that causes severe damage to the lungs and digestive system. CF affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in people with cystic fibrosis, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas. In the lungs when salt gets stuck it causes there to be less water which causes the mucus to become very thick. It becomes very hard to breathe.
The days following his diagnosis were a whirlwind. There was so much to learn and new goals to meet before he could be discharged. Now that we had his official diagnosis we were able to start his treatments and working towards our discharge goals. He started a daily regimen of enzymes, salt, and vitamins and he began putting on weight even faster than before. Within a couple of days we were able to take the PICC line out. By November 20th Emerson was home!
Having Emerson home has been the best. My family of 5 is finally whole. But it has also at times been a roller coaster. Emerson came home at the height of cold and flu season and every time someone sneezes or coughs nearby my heart beats a little bit faster. The thick mucus in his lungs is a perfect breeding ground for bacteria and fungi so avoiding colds is incredibly important for him.
Life has permanently changed for us. We are more diligent about hand washing now, and his big brother and sister change out of their school clothes right when they get home. I've had to learn how to juggle applesauce, enzymes, and salt at every feeding. Steven even wore a surgical mask for a week when he thought he was coming down with a cold. Collectively, as a family, our goal is to keep Emerson out of the hospital and as healthy as possible. We all do our part with glad hearts. To us, he is perfect. To us, he is worth it.
There is still no cure for this devastating disease. Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and neighbors who struggle every day just to breathe. I walk for them and hope you will support me in my efforts.
By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Join our team, Emerson's Adventurers, and walk with us on May 7th at Theis Park. You can also show your support by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.