Wednesday, August 14, 2013

Page 12 - New Expectations

            Once the holiday passed no time was wasted. My schedule was given to me with the explanation that over time it would increase in activity. I had therapy in every category, OT and PT, recreational, assistive technology, special interests. In my case the special interests were arts and books. But all bases were covered in this form of rehabilitation. I had to complete every class before my departure and I had to have three hours of combined PT and OT. If I miss something for any reason, I made it up. But that was also my choice. There were others that sat in their rooms and refused any kind of therapy. I remember feeling sad for other people when I wheeled around. I guess that was always in my nature to want to help others, and it was hard for me to put myself in the same category. But there I was with my schedule and my bland breakfasts and my tilted chair, doing my best to keep up.

            During my stay in the area, they experienced one of their coldest winters, complete with snow on Christmas which they hadn't had in many years. Now, if you've ever been in a hospital for an extended period of time you’ll know they are kept cool and dry to stave off harmful bacteria. The same applies to a rehab facility in that meant I was freezing most of the time. Another odd side effect of the spinal injury in the C-spine region… Your thermostat gets turned upside down and you default to cold. I saw many other patients wearing hats or towels over their heads. I wound up with a nice collection of winter hats, ha ha. On a rare day I could get away with just my T-shirt and sweatpants. But most days, it was a hat and some sort of sweatshirt.

            And so it was, every day learning to navigate with this loaned electronic chair, operated by sip and puff technology. Every day a little closer to learning to live in this new body… Every day slowly weaning off the ventilator. I was at a point where I used it at night and during the day had just my trech in for short bursts of time while I ventured out of my room. As I tolerated it, there were longer bursts, until finally I was able to leave that place with just a Band-Aid over some gauze on my throat. But I’m not there quite yet in my story, I digress… My days begun with medications, yet my nights were not exactly sleep filled and peaceful. My ventilator was checked around midnight every night, vitals were checked, catheter bag was emptied… What sleep. I ask… And then finally the medications, breakfast, bed bath. Initially I did not take showers as I didn’t have the proper chair. Amazingly, it was one tech or CNA, as is the proper term that got me dressed. But they were referred to as techs. Everyone I encountered was amazing for that matter… And so it was, an amazing place to be.

            The first important matter of business and rehab is to figure out exactly what there is to be rehabilitated in the scope of this injured frame. Turns out mine begun with my left shoulder and bicep… Still my strongest areas today. But not the only ones! Never, never say never because you never know. What started in this place was only the beginning for me. No one here nor at the trauma center ever told me what I could or would not be doing, no one said what to expect. So I chose to expect. Everything.

Sunday, August 4, 2013

Page 11 - A Life More Organized

            This new experience was going to take getting used to. I had a setback to my speaking ability because before I was allowed to use the speaking valve again, I had to be evaluated on the ventilator. Talk about frustrating! It was only a couple days and I got through it begrudgingly enough. There was so much more going on around me in this new place that I quickly forgot about any inconvenience. However, It was sort of rough timing that I happen to arrive only the day before Thanksgiving! Things were quiet, people were off work and we had to wait… For what we weren't quite sure.

            Turns out I waited for the driest most bland turkey dinner I'd ever had! I think perhaps dessert may have been better but I can't remember. I know that my family went out and perhaps had burgers that day. I changed rooms after a couple of days and I was introduced to what would become one of my most popular modes of quick transport, the Hoyer lift. Here the main gear was bracketed to the ceiling as it was a fancy electronic lift and the piece came down with a tug so that I could be strapped in a sling and moved. It was not graceful and it still isn't! And except for the cheesecake the food never got better either. My family cooked in a separate apartment and brought me relief as often as possible for dinner or went to a local market and picked up my favorite, salmon and tomato bisque. The food in-house while meant for nutrition, was not going to help me gain the weight I'd lost being tube fed. So my bony ass was always in jeopardy of falling through the sling as they Hoyer me from bed to chair and back.

            Oh yes, the chair! One of the first things that they did was get me a suitable electronically operated wheelchair and then quickly bring me to be measured for my wheelchair. For the next two months this was the way my world would run, everything on a schedule, organized, like clockwork. I was assigned a doctor, a physiatrist that would oversee every facet of my rehab. I would have a team including my nurses and therapists that always worked with me and therefore communicated with each other. I was assigned classes to learn about my particular form of spinal injury. My family also had to take classes, essentially the same ones but also from the caregivers perspective. So now I was suddenly eating and rolling around as an independent "sort of" human being for the first time since the accident. All of this did not come together neatly mind you, there was a huge learning curve for me and my family. But suddenly I was out of the woods of trauma and into the light of rehab. But wow!!

            One of the challenges I faced being back in a sitting position was vertigo. It is not easy going from lying down to sitting up straight after so long. Is also a direct result of the damage to my spinal column that I would experience this vertigo. For a long time I did not set up directly straight but had to tilt my chair back in order not to feel dizzy. This was all under my control with the marvel of "sip and puff" technology. This is how I controlled my chair, my TV and called my nurse. There was also a handy gadget at the side of my bed meant to catch all the stray phlegm I coughed up. Gross but necessary, ha ha… Oh the joys of still being on the ventilator. But there was a system set up right away to help wean me from this beast of a contraption. No detail went unattended, yet independence was encouraged from the get go. This place did not push a patient but rather allowed that person's own desire to heal, to steer how each day proceeded. Sure some people were tougher on me, gentle in nature but tougher… But no one ever insisted I sit up straight or attend a class. If I wanted to I could set my own clock but I tried very hard to allow their own clockwork design to work for me.