Team Sweeney’s Story
Before he was born, Liam was diagnosed with Cystic Fibrosis. Cystic Fibrosis substantially impairs normal respiratory and digestive functions making the simple acts of eating and breathing a challenge. We spent the first three weeks as a family in a hospital while Liam recovered from bowel surgery he had within the first 12 hours of life. When we were able to come home, we n
ot only had to navigate the world of being first time parents, but we had to understand what it meant to be parents of a baby with CF. Our days are filled with doctor visits, breathing treatments, chest physical therapy, and medications to help Liam. Due to the support of family, friends, and the local CF community, Liam continues to grow into a happy and healthy boy! A typical day for Liam involves many medications and treatments. Here are some of the things he has to do.
1. Liam needs to take four enzyme pills every time he eats. On average Liam eats 3 meals a day, plus 3 high calorie snacks. That is 24 pills a day, just to eat!
2. Liam’s diet consists of high calorie, high fat, and high salt content in order to maintain an average body weight. He was on special formula for the first year of life and now needs 3-4, 8 oz. bottles of Pediasure everyday.
3. Liam takes Pepcid twice a day to help fight reflux and aid in the absorption of nutrients from food.
4. Liam takes a special vitamin everyday to make sure he is able to absorb the needed vitamins correctly.
5. Liam takes and appetite stimulant to help increase his calorie intake.
6. Liam takes Miralax and Kondremul to help move waste from his body that is often sticky due to the increased mucus in his body.
7. Liam takes Allegra, Flonase and does nasal rinses twice a day to keep sinus and allergy issues at bay.
8. Liam takes 3 daily probiotics to promote good bacteria growth in his gut. Antibiotics (especially after prolonged or repeated use) are often harsh on stomachs.
9. Liam takes breathing treatments everyday. His morning routine consists of a Xopenex inhaler, which opens up his airways; nebulized Hypertonic Saline, to help move secretions; Pulmozyme, which helps to loosen and thin the mucus in his lungs, and Flovent, to help manage asthma symptoms. At night he repeats the Xopenex, Hypertonic Saline and Flovent. Each nebulized medication takes about 15 minutes to administer.
10. Liam also does chest physical therapy with something called “The Vest”. It is a machine that hooks to a vest with hoses. The hoses fill with air, thereby filling the vest with air as well. The vest then pulsates and shakes Liam to loosen the mucus from his lungs. This treatment is done twice a day for 20 minutes each time. When he is sick, he will do the vest 4 or more times per day. In addition to Liam’s everyday routine, we also bring him to see a pulmonologist, gastroenterologist and respiratory therapist. These visits started out bi-weekly, moved to monthly, bi-monthly and now quarterly (these do not include his regular well checks at the local pediatrician). During these visits Liam is examined closely. Cultures are taken to test for bacteria that could be growing in his lungs and gut. Blood tests are done to measure his levels. Chest x-rays are taken to monitor his lungs and brething tests are performed to measure his pulmonary function. These reminders everyday are the reason that we take part in fundraising! We need to find a cure for this devastating disease so that our son can live a healthy life! Advances continue to be made in finding a cure, but your help is needed now, more than ever, to keep up the momentum of this life-saving research. And, although we have developed therapies that have made a significant difference in treating the symptoms of CF, it is not enough. For the first time in the CF Foundation's history, scientific opportunities are coming at a pace that is exceeding our ability to fund them. Too many young lives depend on this vital research to let it go unfunded! Donate Here: http://www.cff.org/Great_Strides/KettiSweeney
