Many people are unaware of the impact of pediatric feeding disorder. Today, Brenda shares her son’s daily feeding schedule. James, age 3, has an undiagnosed pediatric feeding disorder and relies on a feeding tube for his nutrition.
A Day in the Life… Brenda
I wake up daily at 7 a.m. and immediately place James in his highchair. Although he doesn’t currently eat any food orally, I try to instill a sense of normalcy related to mealtimes. I clean, peel, cut, and blend his breakfast of Carnation Instant Breakfast, banana, and a formula base. By 7:30 a.m., I place blended food in a bag attached to a thin plastic tube. I connect the tube to a plastic “button” that was medically inserted into his belly. Because of the severity of his condition, his food must be inserted directly into his stomach, bypassing his mouth and esophagus. Sometimes James does not tolerate his food causing him to gag and vomit. On this particular morning, James vomits. It is now 7:45 a.m., and I spend an additional 30 minutes cleaning him and the kitchen. I am deflated because he just lost so many critical calories.
By 10 a.m., I administer another tube feeding consisting of the rest of the banana, instant breakfast, and formula mix. This time he tolerates the meal! During the meal, the medical supply company delivers more feeding tubes and clean “buttons.” At 12:30 p.m., James has one of his many therapy appointments. He cries as the therapist tries to help him overcome his oral aversions. Today went well and he even put the baby food to his lips! I am thrilled. During therapy I give James his blended lunch through the feeding tube. 3 p.m. rolls around, and I give James another feeding and a round of medications through his tube. The medicines do everything from helping him combat reflux, to managing his seizures. He fights and cries again. Even though I know he needs it, it is so hard not to just let him have his way and spend this time playing instead.
Out comes the blender again at 5 p.m. Clean, cut, peel, and blend his dinner. No gagging or vomiting. He’s a happy boy! James’ last tube feeding while awake comes at 7:30 p.m. Unfortunately, he vomits and I need to give him another bath and change his pajamas. From 9 p.m. to 7 a.m., I wake up every so often to check that his feeding tube is safely away from his neck while he sleeps. He is on continuous feeds at night, meaning food is slowly being pumped into his tummy to ensure he gets enough calories. The bigger and stronger he gets, the less my inventions to keep the tube away from his neck seem to work. I would do anything for my precious son, and I will continue to fight to ensure he receives the best care possible!