What do you call it???

So our precious boy had his diagnostic tests. They put a liquid into his feeding tube that shows up on film. They take pictures as it moves from the stomach all the way through the intestines. What it showed is that several loops of his small intestine were enlarged-that usually means that something is blocking the intestine and causing everything to back up into the intestines-making it stretch out. This is a bad sign. It looked like some scar tissue (adhesions) might be pulling on the intestines and blocking them. He needed surgery to look at the scar tissue and hopefully release it from the intestines and then move on, things would get better.

Instead, the surgeon was confronted with our son's small intestines mashed into a ball and covered in scar tissue. No wonder it wasn't working. It looked like chronic rejection. Sooo, the intestines had to come out. No one takes this lightly, it's very serious business. In fact, it's best to avoid any further surgeries on the abdomen after a bowel transplant altogether.

Aside from Isaiah dying, this was the worst possible outcome. If a transplant like this has to be removed, then the patient is taken off all of the drugs that suppress the immune system. Then the patient can be re-listed for transplant in about six months. In Isaiah's case, a small section of his transplanted intestines had to remain inside to connect the stomach to the rectum. He can't be taken off the immune suppressing drugs completely now and could still reject the small remaining piece. If he does, that means another surgery to remove even that small piece.

He should be re-listed in about six to eight weeks, I think. We absorbed all of this information during the time of his surgery. His surgeon came out of surgery twice to talk with us. She is amazing.

(I am so very thankful that our pastor and very close friend, Russ, was there with us the entire time. He has been with us to every court date and every surgery for this child from the very beginning. )

So, we went from a transplanted kid to a kid with nothing in his gut. It would have been inconceivable to me before that this could actually happen. But Isaiah is so creative and special in his own way. We knew it couldn't be easy or straight forward with him.

Isaiah has made some very good friends at the medical center that have had transplants, just like him. Unfortunately, they seem to die with amazing frequency. It is heartwrenching, to say the least. Those are the odds that you accept when you are listed for transplant.

Isaiah has let us know that he never wanted to have surgery again. His friend that died last year is in Heaven-so to him it makes perfect sense to go to Heaven too. There are no doctor's appointments, surgeries, IV starts, hospital stays, painful procedures, etc. This weighed heavily on our minds as we absorbed this turn of events.

This is not a situation that calls for a hospice referral. He could live indefinitely on IV nutrition, providing that he does not die of liver failure or a blood infection first. Realizing that, we knew that we had to move on. But how to tell Isaiah???? That was going to be the hardest.