Just some basic information

So once a week I get a delivery from Waylon's home health company with all of his medicine and medical supplies. On a normal delivery, I get 7 bags of TPN (Total parenteral nutrition (TPN), also called hyperalimentation, is the practice of feeding a person without using the gut. It is normally used during surgicalrecoveries. It has been used for patients in coma, although enteric (tube) feeding is usually adequate, and less prone to complications. Chronic TPN is occasionally used treat people suffering the extended consequences of an accident or surgery. Most controversially, TPN has extended the life of a small number of children born with nonexistent or severely birth-deformed guts.) along with 3 smaller bags of Lipids (another word for "fat"). Various needles, alcohol wipes, all of the additives I add into Waylon's TPN - I have 5 vials of vitamins and additives that I add in every evening when getting it set up. Waylon has a backpack that holds his TPN and the pump that runs his TPN through him and keeps him going. My wonderful Aunts Jan and Marilyn bought me a mini-fridge to keep Waylon's medicine in. His medicine was taking up all the space in our regular fridge. ♥ Aunt Jan and Marilyn!!


This is one drawer in my 6 drawer dresser that holds medical supplies. This is ostomy supplies.



This is a pouch ~front and back~ a wafer, that stick to Waylon's skin, and a belt that attaches to the pouch and holds it on.

This is a sample of the items I put into the "medicine" bags I make up every week to get ready to make up to get Waylon's TPN up and ready for him at night. There are 2 additional additives that have to be refrigerated that also go into the medicine bag.

Usually after the UPS makes their delivery on Tuesday evenings, I get all the things that need refrigerated put away and then once the boys are asleep, I make up "medicine bags" with all of the items I need to get Waylon's TPN mixed up and ready to go every evening. I hook him up at 8:00 pm, and he is hooked up for 16 hours - until 12:00 the next afternoon.

It's a lot to keep up with and a lot to try and keep straight. I would never have thought I could do things like this, but a Momma does, what a momma has to do!

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.

The Story of A Cat

My grandmother was a wonderful woman and I miss her dearly. She got a cat in 2001, Toby we named him. She called him Toby my boy. Gram always wanted boys. She wanted my mom to be a boy, she wanted me to be a boy and when Waylon came along. . . . .she was on cloud nine!!!! He was HER boy. Gram passed away in January after Waylon turned a year old. Her last words to me, before I walked out of her hospital room, I knew I would never see her alive, were, "take care of my boy." I'm trying Gram, I'm trying!



After Gram died. Mom and Dad moved into her house, and I bought a trailer and moved in next to them. So we are neighbors, and I am so thankful now that I have them close by to help me with the boys!



When Waylon got sick and we spent the 6 weeks in the hospital, we came home from Pittsburgh on March 13th and Toby, who had never stepped foot into my house before, came into the house and made himself at home. He stays every night with us, and sleeps in bed with me, he comes, gets on my head until I fall asleep and then moves to the foot of the bed. Everyone says that Gram sent him to look after us.