The afternoon was spent in the GI Motility clinic. The appointment we have been waiting for, the appointment that determines the next major step for Brayden. The doctor walked us through all of the test results (barium enema, biopsy, sitz marker, colonic manometry, anorectal manometry). Brayden lower GI system is not working, colonic inertia. And when he does have a bowel movement it immediately wipes him out/depletes him in some way that he is very lethargic and sickly. As the doctor said, "teetering on the edge" and that "we have become accustomed to being on the edge we do not realize how close we are with him" (translation: he could spend more time being critically ill or in the ICU similar to this summer, if we do not address things properly). There are many specifics that show his system not working properly, too many to list right now, but the doctor has the test results that show it all.
It has been recommended that Brayden has a surgery for ileostomy (any other options were ruled out because of Brayden's many other medical concerns).
Ileostomy can refer to a stoma (surgical opening) constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin and to the surgical procedure which creates this opening. Intestinal waste passes out of the ileostomy and is collected in an artificial external pouching system which is adhered to the skin.
We left the GI Motility clinic, walked down the hall and made an appointment with the surgeon. On Monday we will meet with the surgeon to discuss options within the ileostomy surgery and when it will actually happen. We assume the surgery will be sooner than later and Brayden will be in the hospital for about one week.
I dread even the idea of Brayden having an ileostomy. But Jeremy and I both know it is what he needs. It has been decided, Brayden will have an ileostomy.
And our house is slowly but surely becoming our home again. The boys are absolutely thrilled to be home. It will take some time to get things back in some sort of order (which, as you know, Jeremy and I are oh-so patient people, serious sarcasm). There is still so much to do. We are absolutely exhausted, an exhaustion I did not even know existed. We are thrilled to at least be exhausted in our actual house.
Please pray for Brayden, he has just not been himself for several weeks now. Pray that we are clear about the path to take for him. Pray that Jeremy and I find some rest (and not the sleeping kind, our exhaustion is mentally and emotionally). Pray that Carter and Luke handle every thing as well...praying we are not scarring them for life but shaping their character for the better.
It was a long day, long week, long month...long, long, long...