Meet the Food Pump: Around the time of diagnosis, Kenan started having choking episodes while feeding. As these became more frequent we elected to give him a g-tube. It is a simple surgical procedure that allows formula and medications to bypass the mouth/esophagus and go directly into his stomach. The pump lets us to set both volume and rate of flow. He currently receives 4oz over the course of 2 hours 15 minutes 4x/day, what his body can tolerate. In most photos you see Kenan with an extension and syringe off of his belly. Kenan was given a Nissan Fundoplication (a plug on his stomach) to prevent acid reflux and aspiration that can lead to respiratory infections and/or pneumonia, another side effect of low muscle tone. Because of it, he can no longer burp and has to expel air through his tube instead. When his respiration is high (for him), between 8-12 shallow breaths/minute, this is a problem as air fills his belly requiring constant maintenance. When his respiration falls between 4-6 breathes/minute, his breathing is much deeper and there is less belly air to contend with. (For anyone concerned about his breathing, he maintains O2 levels of 95% during both phases of high and low respiration.)
The Vest: This is primarily a preventative measure. There are many side effects from lack of mobility, respiratory infections being one of them. The vest gets wrapped around his torso, is set to a designated pressure, frequency and duration, inflates with air and shakes, shakes, shakes, loosening the congestion that has settled in his lungs. He receives these treatments 3X/day for 15 minutes each and tolerates them well. The downside is he spends the rest of the day working at bringing everything loosened, up, a noticeable aggravation to him and constant maintenance for his caregivers. The benefits certainly out way the drawbacks but the door to quality of life issues get opened for me with this therapy.
The Suction Machine: Out of all of Kenan's equipment, this is the most depressing and poorly designed machine, especially when you are in a state of urgency, yet crucial to his well being; without it he would have choked to death 100 times over. A year ago, it spent most of the time sitting in the corner. Today, when awake, approximately every 3 minutes, Kenan needs assistance either bringing the buildup of saliva and mucus out or holding his mouth closed to help him facilitate a swallow. To keep everything as thin and manageable as possible, we keep him well hydrated with 2 oz of water between his feeds and 5oz of Pedialyte through his pump over the course of the night. The Vest and saline treatments through a nebulizer play a role in keeping everything moving, but point black, we take for granted what it means to have a body in motion.
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