When will it end?

Somehow it feels that every other post is a bad one, and yet here is another.  It's Saturday and we are back in an all too familiar place, Brenner Children's Hospital.  We brought Grayson in for the same thing as previous visits, stool output stopping.  They admitted him shortly after we arrived.  They did another abdominal x-ray and also irrigated/flushed his intestine.

Most of you know our son has Hirschsprung's disease. In Hirschsprung's disease, the nerves are missing from all or a part of the large intestine. Areas without such nerves cannot push material through. This causes a blockage. Intestinal contents build up behind the blockage, causing the bowel and abdomen to become swollen.

Hirschsprung's disease can affect the entire large intestine, or it can affect a shorter length of the colon closer to the rectum. It's more common for nerve cells to stop developing closer to the rectum, since in the mother's womb cells develop on a pathway that starts at the top of the large intestine and ends at the end, near the rectum. So, with Hirschsprung's disease, nerve cells just stop developing while on that pathway.  The lower portion of intestine without the nerve cells is surgically removed.

With Grayson, he had his first surgery at 6 days old and his large intestine was cut at the location where the nerve cells were present (so we thought). During surgery, tissue samples are sent to the pathology lab to determine if these nerve cells are present at various locations.  This is how the surgical team determines where the good portion or intestine stops and the bad portion of intestine starts.  The nerves start and stop at some point prior to the rectum.  There is only one point of this, it is not intermittent.

Grayson had his emergency surgery about 2.5 weeks ago and, as we mentioned in that post, there was a section at the end of the large intestine that was cut out due to a really tight unusual loop that could have been causing issues.  Well, we just found out tonight that when that section of intestine was sent to pathology there wasn't any nerve cells in it.  Which means the intestine wasn't cut at the correct place in the first surgery as there was still bad intestine.  The pathologist who looked at the recent tissue went back and reviewed the info from the first surgery and deemed that there wasn't nerve cells on the tissue that the other pathologist thought there was.  So now they will do another biopsy on Monday on his stoma (end of intestine that is connected to his abdomen currently) to see if there are nerve cells there.  If there aren't nerve cells there, our poor little guys will be going back in for surgery on Tuesday to cut out more intestine.

This is extremely frustrating, and as a parent irritates the hell out of you, knowing that one or more of these surgeries could have been avoided.

This whole process has really been wearing on us as we have spent most of our days and nights in the hospital and the time we have been at home we have just been waiting for things to start deteriorating.

We wish we had more positive updates.