So close to reaching my goal

[In my last post I wrote about leaving the rehab hospital and coming back to Barnes Jewish Hospital in St. Louis for several days so that my family could receive ventilator training.]

When I got to my room and was transferred from the stretcher to my hospital bed, my nurse came in and asked my mom if she should cut my clothing off of me. (I was wearing pajama pants and a t-shirt; not a hospital gown.) My mom emphatically said, "No, we will undress her like a normal person." I wasn't in the ICU like I had been my first seven weeks at Barnes, so I was starting over with a whole new group of nurses, and none of them them knew anything about caring for someone with a spinal cord injury. When my mom would tell them specific things that they needed to do for me, they treated her like "who was she to tell them how to do their job."

I absolutely hated being in the PICRU. On that floor each nurse had about six or seven patients to care for. That might be all right on a normal basis, but when they were caring for a patient like me—a person who can't do anything for themselves. I really needed to be on a floor where the nurses only had two patients to care for, like in the ICU or observation unit, so that they could be there if/when I needed help, which I often did.

I wasn't cared for well at all. Here are a few examples: It's very important that people who are bedridden get turned and repositioned every few hours so that they don't develop pressure sores or bedsores. One night I was lying on my back just waiting for someone to come in and reposition me. I'd been lying in the same position for hours, far longer than I should've been, and I was starting to panic because no one had come to check on me all night. Finally a man came in to do something on the computer in my room. Relieved, I clicked my tongue several times (my only way to call for attention since I couldn't speak). However, the man just kept doing what he was doing on the computer. I started clicking more frantically, but the man started humming, finished up his business on the computer and walked out of my room. I was so insulted at being ignored, especially when I really needed help.

Frustrated tears filled my eyes and I was consumed with rage. "Did he know who I was?!" I was a human being! He wouldn't have dared ignore me a few months earlier when I was a normal, beautiful young woman. I was so angry at being ignored, but there was nothing I could do about it because I was trapped in a broken body and I couldn't even talk. The next day when my mom arrived I told her what had occurred, and she told my day nurse what had happened, and that it wasn't acceptable. It didn't do any good, though.

The next afternoon I started feeling sick to my stomach. My mom had just left for the afternoon, but prior to her leaving she had given me a big drink of grape juice. It really wasn't sitting well in my stomach, and I started dry heaving and I thought I was going to throw up. Luckily, my friend Lacee was visiting. She went out to the nurse's station and told them that I wasn't feeling well, but the ladies at the nurses station scolded her and told her it wasn't her place to call my nurse in. I was so disgusted that the people who were supposed to be taking care of me were doing such a poor job. When I did start spitting up stuff from my stomach, Lacee was the one wiping up my mouth, and my nurse was nowhere to be found.

There are a lot of other stories I could share, but I don't think it's necessary to go into so much detail. The point I'm trying to get across is that I wasn't taken care of the way I should've been, and it was infuriating. When my mom did speak up and say something to the nurses, they weren't very kind or respectful to her. They treated my mom like she didn't know the first thing about taking care of me, even though we'd just spent the previous seven weeks in a rehab hospital learning how to care for the needs of a person with a spinal cord injury. They were the ones who were incompetent and didn't know how to care of the needs of someone with a spinal cord injury!

I spent several days getting acclimated to the kind of ventilator I would be on when I went home. One day my mom came up with my two younger sisters, and the three of them spent the afternoon learning the ins-and-outs of the ventilator. Richard, the man teaching my family the art of the ventilator, was a very thorough teacher, and after several hours my mom and my younger sisters felt fairly confident that they knew enough about the ventilator to feel comfortable taking me home.

I went home on Friday, February 27, 2004, after being in the hospital for 15 weeks. (Remember, my accident had been on November 17, 2003.) It had been such a long road, and I was so happy to be going home to live. My grandparents had driven down from Minnesota a few days previously so they could assist my mom in getting all of the last minute details in order, and it was a huge help to her.

I was so excited when the ambulance transporting me home showed up to the hospital and loaded me into the ambulance. When we pulled into the driveway of my home, I was so happy to be home that I didn't even care that my grandpa was busily snapping pictures of me as the paramedics unloaded me from the ambulance and wheeled the stretcher I was on up the newly built ramp in my garage and into the house. As the paramedics transferred me from the stretcher to my brand new hospital bed, my mom looked at me with tears in her eyes and whispered, "You're home." It was such a wonderful feeling.

I couldn't wait for three o'clock to roll around because I was so excited for my younger sisters, Laura and Chandra, to get home from school. All of my friends wanted to come over that afternoon and evening to wish me well. I felt so happy and so loved.

I did reach my goal, which was being home in time to watch the Academy Awards with my friends. We had our dinner of Chinese food, and I was so happy to be in my own home with my friends around me. And to make things even better, we were able to see The Lord of the Rings: The Return of the King sweep the Oscars, winning all 11 Academy Awards it was nominated for, including best picture, something that had never been done before in history.

Although one part of my journey was over, the real work was just beginning. My life had changed so drastically and it would never be the same. Creating a new normal would take some time.