So the results are in. All of Jerry's biopsies and his test for SMAS are negative. However, if he doesn't start eating and drinking again, the SMAS will return and we will be back here yet again.
So now that we know this is behavioral/psychological, we at least have a starting point, if not a plan yet. They re-inserted his NG feeding tube about an hour ago. They had removed it after using it to clean him out. Not sure why. They should have just left it in "just in case." Anyway, they didn't and there were lots of tears over getting another new one today, shed by Jerry and his mom.
The plan medically is to work on getting him to eat during the day by mouth and then feed him 360-calorie-a-can formula from 8 pm to 6 am. After seeing how well his stomach tolerates this over the weekend, Monday they will put him to sleep and two GI doctors will convert his NG tube into a G-tube. One navigates the internal camera to choose the proper placement while the other doctor actually makes the incision and attaches the tube to his belly. Again, this is a more permanent solution to feeding him at home until we get him eating and drinking again. If the calorie rich formula proves to be too upsetting to his sensitive stomach because it hasn't had to handle that many calories in a long time, then they will back him down to a milder formula.
I spoke with Jerry's behavior therapist today and her and his other therapists are working diligently now on a plan to change his behavior and habits and get him eating again. I am anxious to implement this new plan they are working on devising. We are speaking to an occupational therapist about sensory issues and how to cope/compensate/correct them. Feeding therapy may also be in his future. In the meantime, we have to begin logging everything he does eat and drink. We are going to try to figure out a connection between what he is eating and the sensory stimuli he is either looking for or trying to avoid by eating that particular food.
While initially I was angry when I realized this was all behavioral, I truly believe that he cannot help what is happening. He cries over food, literally. He cannot tolerate the smell or the taste or the texture. He wants to go home. He hates the feeding tube. He is not doing this on purpose. And it likely does hurt to eat much of anything at this point. His belly and colon have not had to work hard to digest much of anything lately. So when he does eat, it hurts. He ate a few bites of his lunch yesterday afternoon and then sat on the potty for twenty minutes in pain.
We have our work cut out for us. So does he.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.