Today Carter had a NJ placed, a biopsy and his stomach and intestines scoped. You would think that we would be almost immune to hearing very unexpected news or at least somewhat numb to it, but we are not. It is still just as heart breaking and painful as hearing that Carter would be born with Cloacal Exstrophy. It's an unexplainable hurt. A hurt that I feel only a Mother or a Father of a special needs child could feel. Our GI doctor at Johns Hopkins took a scope and looked into Carter's stomach and there the defects were. The defects that have been present, yet unknown, since birth. Carter's stomach is very small for his size. When I say small I mean extremely small, too small to hold an adequate amount of food. His pyloris, which is the opening from the stomach to the intestine is misplaced. It is on the inner top side of his stomach instead of the inner bottom side. This makes it extremely difficult for the stomach to empty into the intestine. His food has to fight gravity to empty into the intestine. I actually have not figured out how we have not had a problem with this before now or how this has not been discovered until now. Carter was born with this, although it is not commonly related to cloacal exstrophy.
The first step is to see if Carter can tolerate feedings through the tube he has going into his intestines that bypass his stomach. This has already shown to be a problem. The feeding tube Carter had placed today goes from his nose through his stomach to his intestine. The small amount of tube going through his stomach is too much for his little stomach to handle and Carter has tried multiple times to vomit the tube up. Brandon and I, along with our GI Doctor feel that it is only a matter of time before he vomits up the tube. The tube has to be placed under anesthesia, so it is not ideal to place the tube multiple times. If Carter can tolerate his feedings into his intestines, he will soon be receiving a G/J tube. His pyloris will also need to be placed in the right location at some point.
Our surgeon in Mississippi has spoken with our GI Doctor here at Johns Hopkins and they both feel confident that the surgery aspect of Carter's care can be managed at Batson. Our surgeon will manage Carter's care with the GI department at Hopkins. We will be traveling back to Mississippi on Monday and plan to meet with our surgeon on Tuesday. We will discuss the next step. Thank you all so much for all of your sweet messages, text and prayers for Carter. They make the painful times a little more tolerable.