UPDATE: I took him for a modified barium swallow today, and it threw me for a loop. Apparently, he is collecting food and liquids in the back of his throat and is at "very high risk" for aspiration. They are strongly recommending nothing by mouth until they can fix it, which will mean a balloon dilation of his esophagus. Until then, nothing but tube feedings, and he is really devastated. The one thing he looks forward to every day is eating, and now he can't. And he feels hungry all the time because the tube feedings aren't filling him up. The GI doctor ordered 2 oz of Pediasure every 2 hours, which if you do the math is only 1 1/2 cans a day, not nearly enough caloric intake and not nearly enough to make him feel full. This recommendation came after hours, so I will be calling first thing in the morning to complain and see what they can change.
Hi all. I'm not going to go into a lot of detail, but I feel like we're going somewhere with the GI appointment. She totally validated my concerns about his GI system slowing down after the stimulator implants and my instincts that the new formula that the nutritionist recommended could be part of the problem. She stated that when kids get stimulator implants, it frequently causes issues with the entire digestive system. She ordered a gastric emptying scan to see if his stomach is emptying properly. She also wants him to have a modified barium swallow, which he's already scheduled for today. Then she wants us to see the nutritionist. He's having so much trouble eating that he's using more calories to eat than he is getting from the food. The concentrated formula does not have enough water in it to keep the intestines working, and the more concentrated it is, the longer it takes to empty from the stomach. There are a whole lot of factors related to what's going on with him, and I am so glad that we saw the GI doctor. I finally feel like we have a plan.