Disappointment

Oliver had his swallow study done at 3pm. He got about 4 bites of applesauce mixed with barium (so we could watch on the videofluoroscope). The speech therapist stopped the feeding and began to massage his cheeks and throat. And then she stopped the study all together.

SMA causes muscles to weaken over time. Muscles like those used to swallow. Oliver would try to swallow the applesauce, but a lot of "residue" would remain at the back of his throat. When he would inhale a breath, the residue would be sucked into his windpipe and hit the top of his vocal cords. Any residue that enters the windpipe is considered aspirated and, if it enters the lungs, can cause pneumonia.

The recommendation from the speech therapist was to discontinue oral feeds. She was very sympathetic and told me how much she hated having to tell me that news. We watched the recorded video together and she showed me where the food had penetrated the windpipe as well as where food had entered Oliver's nasal passages. I asked her if she thought this was due to the Nissen or the post-op or SMA. She didn't even hesitate. It's the SMA progressing.

That was the first real blow since we've been in the hospital. Everything had been progressing nicely. And our goal had always been to continue oral feeds after the g-tube surgery. Especially since Ollie loves sweet potatoes and blueberry applesauce! Instead, SMA has stripped away another layer of normalcy.