During the years Lew lived at home with us, a g-tube was suggested several times but there was no medical reason so we declined. Lew could eat orally. It took time: often forty-five minutes to an hour for each meal. Lew had a very sensitive gag reflex. It was not unusual to spend forty-five minutes feeding him and then have him throw it up. Since his seizure meds were oral and his swallow so uncertain, we never knew how much of his meds he was really getting.
Lew had been at The Home of The Innocents only a few weeks when they suggested a gastro tube. Again there was no medically required reason offered. No one said it directly but the message seemed clear to me – it would be easier and more convenient for the staff. We refused. “As long as Lew can eat orally, we insist that you feed him” –(Read that with feeling and not a little anger.) Feeding someone who can’t feed themselves, it seems to me, should be a basic service and a basic human right.
Then a day came when everything changed. Lew began to refuse to eat. He seemed to be in some sort of distress but finding the problem required two weeks in a hospital to no avail. The good news was this: I made a suggestion to a doctor who took me seriously. He even said, “That could be right! We’ll check it out.” I suggested that Lew had spent the six weeks before in a lower body cast after hamstring release surgery and had not been able to sit upright. Perhaps his meds lay in his esophagus causing irritation. Even if this “diagnosis by parent” had not been correct (it was) the fact that a doctor took my suggestion seriously would have been memorable. After all I was the one whose medical specialty was Lew Moore.
When a g-tube was suggested this time, we agreed. This time Lew let us know he needed it. It wasn’t for anyone’s convenience or benefit except his.
As it happened Lew’s g-tube worked out very well. He gained eighteen pounds in three months. He was able to get all his medicines perfectly. Despite this good outcome, I’m glad we refused this surgery until Lew let us know he needed it.