Back again after a few years of pursuing all options for swallowing safely…recreational eating as one doctor called it. Unfortunately whatever started to deteriorate in 2022 when I first wrote about it has continued. My husband began an intensive speech therapy program followed by esophageal dilations, and a cracopharyngeal myotomy. Last year it became clear that these interventions weren’t going to work at this stage of his Dysphagia.

He has been on a peg tube and totally reliant on formula for nutrition since 2022. Over the last year he has been to the ER 6 x for aspiration pneumonia. What started as an attempt to resume swallowing function in 2022 has turned into a search for identifying the cause of the aspiration event and finding ways of preventing it from happening again. Each hospitalization has been a learning experience. He learned to sleep on a slant, pace his feedings, takes antacids..the list goes on yet no definitive cause has been identified. Sometimes it looks like a buildup of saliva in his throat and at others it appears to be regurgitation. The most recent option doctors offered is to convert from a g-tube to a g/j tube. We have no information on how effective this may be or what additional lifestyle changes will be needed.

Does anyone have experience with this method of feeding?