Micah is very short gut at this point. He had significnt small bowel loops removed with his MI. He had his gallbladder removed at 3 months. At age 4, he had a bowel obstruction that cost him more of his small intestine, his illeoseccal valve, his appendix and a portion of his large bowel.
Weight gain has been a challenge his entire life. Add to that his Autism and the fact that his biological parents essentially abandoned him in the hospital everytime he went, so he never had the opprotunity to associate eating with positive activities and making his tummy feel better, and he is fully g-tube dependent at this point.
In order to help Micah thrive, we have to get 3000 calories into him per day. Basically, in the words of his Heptalogist, we overwhelm his bucket with so much volume that we override the hole it pours out. However, if we miss 3000 calories, he'll start to lose weight. I have NO idea what we're going to do if he continues to grow and his caloric needs increase from the current 3000 as this is where we've been for at least a year now.
Last May, we were up to 63 pounds. At Christmas, due to the school violating his Medical Care Plan and doctoring documentation, he was all the way back down to 49 pounds. Since conclusively proving that issue, we've got him back up to 58 pounds. However, it takes constant vigalence to keep his weight up. He's nearly 10 and there's never been a day when his weight and calories weren't a huge part of his life. I do think his Autism plays a huge role in this struggle, but a lot of it is also his short gut struggles.
I have read some studies about giving pectin supplements to encourage regrowth of the bowel loops. We have actually used pectin for several years to attempt to bulk up Micah's stools (a HUGE challenge without an illeoseccal valve). The last bowel study they ran showed he has NORMAL bowel loops at this point, miraculously. I suspect the pectin may have done exactly what the experimental studies have shown. The problem is that FUNCTION did not regenerate with length. So, despite the length of his bowels, he still has very short gut. I didn't give him the pectin for that reason, but I had hoped it might help somewhat. It hasn't really.
