After spending the summer and beginning of spring in the hospital I was ready to go home. I was off work on a long-term disability and wanted to get back to that also. Every time I said I wanted to leave I heard the same three words, "Maybe next week". I thought I had enough bowel rest to last me the rest of my life, and removing the feeding tube from my nose could not happen soon enough. I never wanted to look a bowl of jell-o or broth in the face again, but "maybe next week" would have to do.
Then a miracle occurred, it was finally next week!
But hold the phone! My doctor said I could go home if I wanted to, but my tube was going to be staying right where it was, in my nose. He actually smiled at me when he added that part. Oh well, it could be worse right? I was finally going to sleep in my own bed again!
The day before my exodus all of the plans were made. A new pump was going to be delivered to my house, all of my scripts were written out, my family brought all of my presents and other belongings home and I said my good-byes to the nurses and other patients that had become like family to me.
Walking out of there knowing I didn't have to go back was blissful, but it almost felt like I was doing something bad when we drove away. Seeing the streets and people coming and going was kind of strange, everything looked so clean and new, but as we drove into my driveway I thought I was going to burst with joy!
As I tried to walk up the stairs to my room I realized how long it had been since I had done any exercise. My legs were shaking, my heart was beating and I had to rest part way up. That gave me and our dog "Cookie" time to catch up and cuddle. My room seemed smaller, but it was just perfect. I laid down and thought I could feel the springs in my mattress, but I passed right out.
When I woke up it was back to reality time. My new pump had been delivered and I was plugged back into the wall. I had named my pump "Jo-Jo" in the hospital and christened this one the same. The cord was not even ten feet long, so that was as far as I could go from the outlet. This depressed me immenseley so my Dad got an extension cord. I could move about the whole main floor without having to un-plug and re-plug myself back in whenever I wanted to go into another room. The battery didn't work very well, it wouldn't hold the charge. My Mom mixed up my liquid TPN (Total Parenteral Nutrition) meals in a big bowl, then poured it into my bottle which went through the pump, up the tube and into my stomach. She was awesome for doing this for me every meal, every day. She also made my jello and broth. When it was breakfast, lunch and dinner time and I was hungry (I wasn't always) I would get some help with my pump down the stairs and eat my liquid meals down in the rec room when everyone else was "chewing" their meals upstairs. Everything smelled so good!
For being so good to me I shouldn't have paid my Mom back by grossing her out. I was curious about my tube. I'm a very curious person, that's just who I am. I was standing in the powder room on our main floor looking into the mirror with my mouth open wide. I called for my Mom to come join me for a minute. She came and stood behind me as I told her to "Look at this" and opened wide again. At the back of my throat was my tube, it was right there. She thought it was gross, but laughed. But it kind of surprised me. I knew that it would be there, but seeing it hanging there was weird.
One afternoon as I was in my room watching a movie (a friend that worked at a movie store brought me an unlimited supply) the smell of KFC came wafting into my nose from under my door. Everyone in my family had plans that night so my Dad picked up dinner. Down I went to the rec room to eat my broth, my mouth watering like crazy while they were enjoying "finger licking good" chicken. The horror. Out they all went, it was the first time I was home alone. The doorbell rang so I went to answer it, there were three of our neighbours standing on our porch. I opened the door and they asked for my Mom. I told them she was out and that I would take a message for them. They said not to worry about it and walked down the driveway. Then I heard it. "Look at her", "What's with the tube?", "Does she have Cancer?", they didn't come by to see my Mom, they just wanted to get a good look at me. I heard the rumour mills start spinning. Why can't people just ask questions about things they don't know or understand, why do they have to just make up stories and whisper among themselves? I have never understood that.
Shutting the door, I realized I was thirsty and opened the fridge. There in front of me was the leftover chicken. You know in movies when they show an Angel on one shoulder and a Devil on the other in times of temptation? That was happening to me and as hard as I tried to not give in, the Devil won. I was just about to find out why you aren't supposed to eat with a feeding tube in your nose. The KFC skin is my favorite part and I was thinking what's a little piece going to hurt? And then the idea of just chewing it and spitting it out came to my mind. Just tasting it would be alright. I ripped a little piece of skin off and popped it in my mouth. Oh wow, it was heaven! Then without thinking I swallowed. Big mistake. The skin got stuck on the tube and I started to choke. You can't imagine the things that were flashing through my mind. My parents would kill me if I died from something so stupid. I saw newspaper headlines in my mind that read "Moron Girl Chokes On Chicken Skin", panic had set in. I was coughing and coughing and finally it came loose. Sitting on the floor I thanked God for not taking me and sparing my family the embarrassment of such a stupid move on my part, and swore not to eat ANYTHING other than my broth until I had my doctor's permission.
It had been a long night and I was feeling pretty weary. Again, without thinking, I took all of my bedtime medications. These included, amomg others, a sleeping pill. It's very hard to sleep with a tube laying in your throat. Unplugging myself and walking towards the stairs I realized there was no way that I was going to be able to lift Jo-Jo and carry him all of the way upstairs. But I tried anyway. When I made it to the first landing (only two steps) a break sounded good, so I sat down and tried to pump myself up for the next big hurdle. Then I woke up in my bed the next morning, realized that I must have made it here by myself, and felt really proud for a few seconds. Who was I kidding, there was no way I got there myself. I found out my Mom carried Jo-Jo and my Dad carried me.