I had a good phone chat with Dr. Kodali, the pediatric gastroenterologist. It was a good discussion on moving forward with the G-Tube, perhaps in a few weeks.
There’s also a procedure called Nissen fundoplication (Nissen) we need to learn more about. It’s essentially going in and wrapping some of the stomach tissue around the base of the esophagus to prevent reflux. Reflux is common in SMA babies and can lead to potential reflux aspiration and related pneumonia.
Although Getty doesn’t have a reflux problem now, it’s bound to happen someday, as SMA is a degenerative condition.
There is a split of opinion between gastro and one of the Kaiser surgeons on whether to do the Nissen. Gastro is recommending G-Tube and Nissen, but the surgeon is reluctant to recommend Nissen in SMA babies, asking, “Why would you want to put a [SMA] child through that?” The surgeon’s thought is that a weak SMA baby shouldn’t be asked to endure the Nissen procedure.
Based upon a very quick read, it appears Nissen is recommended and the answer to the surgeon may be because I’d rather not risk putting a child through pneumonia caused by choking on reflux. I have more reading to do and consulting with our beloved SMA community. My hunch is they will tell me to find a different surgeon.
It’s like taking a crash course in medicine on top of everything else. Soldier on!