Day 4 - Very Rough Day

Today was a long emotional day.  Grayson went into surgery a little after 10:00 A.M. to redo the first surgery.  The surgery would consist of analyzing tissue samples of the intestine starting at the distal end (closest to rectum, where the stoma currently is) to look for the nerve cells which identifies the transition location from bad intestine to good intestine.  We were in the waiting room for quite some time and new the longer the surgery went the worse it would be, as that meant they kept going further along the large intestine. When the surgeon came out to talk to us after almost 6 hours we new it wasn't great (usually they don't come out until surgery is over).  He let us know they went through the entire large intestine and there were no nerve cells present and they started taking tissue samples from the small intestine.  Luckily, they found cells at the beginning of the small intestine and were able to keep it in tact. Surgery was completed at 7:00 P.M. after almost 9 hours.  So, now Grayson has an ileostomy (similar to colostomy but with small intestine rather than the large intestine) on the other side of the body.  They cut his belly at the same location as the last surgery.and closed the location where his colostomy was.  His new stoma is very unusual looking as they took a 3" piece of his large intestine and stapled it lengthwise along the small intestine (at the distal end of the small intestine where it comes out of his abdomen) So it looks like two circles adjacent to each other.  The plan is to try and create what they call a J-pouch out of it and reconnect it to the rectum next year some time.  So unfortunately, he will now have his bag for over a year rather than a month.

We have a long road ahead, as this threw another curve ball at us.  We will have many challenges with this new change.  There are big challenges with keeping him from getting dehydrated and maintaining his sodium levels without his large intestine.  There will also be a lot challenges with his diet and going to the bathroom.  All of this is magnified as children with Down syndrome generally do not fare as well as other children. They have a two- to threefold increase for all of the potential complications.

Grayson has Total Colonic Hirschsprung disease, which is Hirschsprung disease that effects the entire large intestine. This occurs 1 in 100,000 babies.

Grayson has Total Colonic Hirschsprung disease in conjunction with Trisomy 21 (Down Syndrome).  This occurs approximately 1 in 1.3 million babies.  Yes I said million!

So I guess Grayson is better than 1 in a million!

We are doing our best to stay as strong as we can, but it is extremely difficult.  Again, we appreciate all the thoughts and prayers.