Preston's Story

Preston was born on July 1, 2011. During utero his abdominal cavity closed in without most of his intestines inside which caused him to have “short gut syndrome”. He was found to have approximately 30cm of small intestines and most of his colon. Because of the lack of intestines he is unable to absorb nutrients from the food he eats. This lack of nutrition requires him to have IV nutrition administered through a catheter which is tunneled into his heart. The medication is carried in a backpack along with a pump that he wears 16 hours a day. The catheter is at high risk of infection and requires sterile procedures when handling it. Furthermore the bandage on his chest cannot be exposed to water or excess amounts of sweat. This inhibits his ability to play outside in the heat, swim, take showers, bathe openly in a tub, or have any exposure to anything that could contaminate the line. Preston also requires home bound services through the school since he is immune compromised and needs close medical monitoring for dehydration, abdominal distension, and fatigue.

            Preston also has Arthrogyposis which affects development and motor skills in his shoulders, arms, and hands. His hands are contracted and he is unable to open his fingers, lift his arms over his chest, and feed himself from a spoon.

            He has endured 4 abdominal surgeries to try to correct and lengthen his intestines. He also had open heart surgery in 2018 due to a blood clot in the center of his heart caused by the catheter in place. 

            We are currently in the process of trying to “wean down” his IV nutrition and our goal is to remove his central line within the next few years. We appreciate all the prayers and uplifting support from all of you.