My husband Ryan and I have three children. When Madison, our oldest, was 2 months old she began to drop weight dramatically and developed a strange cough. Our pediatrician sent us to SSM Health Cardinal Glennon Children’s Hospital for testing and that day we began our journey at our second home.
Madison was diagnosed with Cystic Fibrosis, a life-threatening genetic disorder that damages your lungs and digestive system. Within a two-week time frame, we learned more than we ever wanted about picc lines, blood draws, chest percussion therapies, enzymes and so much more. Twelve days after being admitted, we left the hospital with our 2-month-old baby and they had successfully armed us for battle. From that day on our world had changed. We gave our baby medicine every time she ate, did three nebulizer treatments a day and three thirty-minute hand percussion treatments, which at the time was her dad and I pounding on different areas of her chest and back to help dislodge thick sticky mucous that clogs her airways. Since then, Madison has had surgery for a port to give her long term IV antibiotics, two sinus surgeries, a surgery to insert a feeding tube, multiple bronchoscopies, chest x-rays and more than ten hospital admissions that have lasted from 10-14 days. For a girl who is now 13, 14 days out of your life is an eternity. Thankfully, SSM Health Cardinal Glennon makes these visits more tolerable.
Madison and Logan’s physician, Dr. Blakeslee Noyes, has become a friend – someone with whom we trust and confide in. Every clinic visit he warmly greets us and wears a tie Madison designed for a Cystic Fibrosis fundraiser. He talks basketball and life, not just medicine. He never rushes our visits and makes us feel confident in our parenting of children with life-threatening genetic diseases. I did say children. Our middle son Brady does not have Cystic Fibrosis, but our youngest son Logan does. Cystic Fibrosis is recessive, which means each of our children have a 1 and 4 chance of having the disease.
Logan was diagnosed from a newborn screening. Logan has been blessed to have only one hospitalization thus far. We believe that this is due to the excellent care from SSM Health Cardinal Glennon and the new advances made possible from the Cystic Fibrosis Foundation. He has seen his share of hospital rooms though and again we cannot be thankful enough to have such a magnificent children’s facility so close to home.
Due to their disease, Logan and Madison are very restricted to how often they can leave their room. The hospital’s team of Child Life professionals, along with play rooms and programs allows them to have some normalcy throughout their hospital stay. We cannot thank the nurses and physicians enough for making us feel like family in which they support wholeheartedly. Hopefully you will never have to know firsthand how lucky you are to have a children’s hospital of this magnitude so close to home, but if you do, you will know that you made a difference in supporting it.
– Ryan and Alicia Luechtefeld