The story continues. . .

So on February 16, 2009, I was taken out of my son's ICU room, by 3 nurses. And they started to intabate my tiny little boy and he coded on the table right there in front of them. Luickly they worked and got his little heart beating again. I was taken to the surgical waiting area and a Chaplin and a Social Worker sat with me while "miles away" the surgeons were cutting into my baby boys body. I was so wracked with guilt and anger and sadness. I just wanted to hold him. I wanted to be in the room with them holding his hand and telling him it was all going to be ok. Didn't the doctors know that he needed me there to help him? After what seemed like days, my parents finally showed up. We all cried together for a little while. Then the surgeon came out and got us and told us how bad it was. He had had a "malrotation of the bowel with a volvulus" HUH? Yeah that's what I said too.

"in a condition called volvulus, the bowel twists on itself, cutting off the blood flow to the tissue causing the tissue to die. The symptoms associated with volvulus, including pain and cramping, are often what lead to the diagnosis of malrotation."

"Obstruction caused by volvulus is a potentially life-threatening problem. The bowel can stop functioning and intestional tissue can die from lack of blood supply if an obstruction isn't recognized and treated. Volvulus , espically, is an emergency situation with the entire small intestine in jeopardy."

So Waylon's stmoach was cut open right down his little belly, the doctor did cut around his belly button. They took out the portion of his small intestines thet they knew was dead, and left some that they were hoping would pink back up and live. They left his stomach opened and just packed it and covered it.

I was taken out of his room around 11:00 am about 4:30 that evening, his dad and I held hands and walked into a nightmare.

My son was bloated, hooked up to monitors and tubes and needles and wires coming out and going into every hole they could find. He was so bloated he looked like he was about 12 years old. Some people wouldn't have recognized him I don't think. Oh My it was an awful experience. I relive it in my dreams a lot.

The doctors did not expect him to make it through the night. But his momma never gave up on him. Not once did I ever think that my baby boy would leave me. I knew he had fight in him. I knew he would stay with me. He was to stubborn to leave me!

He fought hard and stayed that first night. He did a lot better then they expected. That night, and the rest of the days to follow. On Wednesday, they went back in to see what they could save, if anything. And they couldn't save much. So Waylon has between 10-15 centimeters of his small intestines left. He has an Ileostomy: "a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the ileostomy and is collected into an external pouching system stuck to the skin."

That is just one hurdel in our journey as a short gut family. There are more to come.