Big Gulp...Testing

So what's causing Lew to not be able to eat? They did the modified swallow study, upper GI and button test yesterday so we could see how LJ's mouth, throat and esophagus behaved while eating and whether the Nissen was still intact. Didi and I went with LJ while M, the nurse aide took Nate to school and Bop did pick up since it was sure to take more than three hours. I am also so glad our speech therapist offered to join us as well because I had been so anxious about getting Noodles to swallow enough to get any results from the test. (LJ previously had a lower GI test back in May so we knew already his intestines and stomach empty normally). However this GI test proved that the Nissen is still holding up well. Through the modified swallow study he was next able to sit in a feeding chair, sit and eat pureed avocado that I brought ("honey" thicker consistency and "nectar" thick consistency) mixed with barium. It was not a pleasant experience for any of us… lots of coughing, gagging, and crying (screaming). He did okay for the first three bites but either through fatigue etc just brokedown afterwards. Luckily they never subjected him to loose, wet liquids. Unfortunately, he did aspirate, which means he has mild dysphagia (food-sticking) and he is at risk for aspirational pneumonia.

There was a lot of medical speak that came out this x-ray, but what we took away from it is that Lew's swallow pattern is abnormal though the actual anatomy of his mouth and throat is normal. In the end, his anatomy just doesn't work the way it should. They showed that his esophageal flap wasn't protecting his airway and the barium mixture just pooled in his throat until he essentially must feel like he has a foreign body in his throat. There isn’t any obstruction or any foreign body hindering his eating so the consensus is that this is probably a neurological function (specifically, the pharyngeal phase of swallowing.) At least we now know to be extremely careful with oral feeding attempts because he could get really sick. It also indicates to our therapists that they need to adopt some cold therapy (a tiny laryngeal mirror that is similar to what dental hygienists use) to help sensitize the back of his throat in order to become better aware there is something there and in the end, organize his swallowing and protect his airway. We also have to use thickener such as rice cereal or "SimplyThick" food thickeners so that he has time to react.

So what do we do now? I suppose that's a question for another day.

Lots more practice which we hope will be at the Kennedy-Krieger soon! The Kennedy-Krieger recommended he come on a weekly basis as an outpatient for oral-motor and behavior therapy. There is a three-month wait list for that. So it's hurry up and wait, but at least I feel glad they didn't outright say he wasn't a candidate. The nutritionists, nurses and staff were all very professional and I feel like they really got a good glimpse at our feeding routine. The drive isn't fabulous but the facility is nice and at least we won't have to uproot the family for too long unnecessarily. He's just got to wait 6 more months before he might be admitted into the intensive 4-6 week-long inpatient feeding program. They want to maximize his potential by working on basic skills before we go full throttle...even more so now that we have the information back from the swallow study.