The young man in a coma may not be doing as well as they were thinking. So much hope, so much that is unknown and misinterpreted. In the early stages, I know I wouldn’t have been able to handle the full implication of what her fate was. I needed to have Hope and denial. The hospital staff had to tread lightly, as they knew how probable it was that she was already gone.
I remember when Alex started storming. Her arms and legs started moving, so we thought she was coming back to us. Very quickly, it was obvious that it was the autonomic brain dysfunction. This is when all of her vitals spiked along with her limbs wringing and contorting uncontrollably. We didn’t even know what that meant. The nurses and doctors would try to explain what was happening, but I needed to research what was happening. I wasn’t sure if I trusted them or their skill level. After all, we weren’t in a large city. So I would go to the computers in the ER waiting room every chance I got. I remember thinking, as her mom, I could help her relax and stop posturing..boy was I wrong. It was all involuntary, she had no control over what her body was doing. The more we touched her, the worse it was.
Her dad and I became pros at icing her body to keep her temp below 101. Her temp had gone up to 106, and the nurses on that particular day were in way over their heads. When her Neurosurgeon told us he needed her temp. To stay below 101, we were like the ice fiends. We had a system down to an art. One day, a nurse wouldn’t let us do it. She poured alcohol all over her instead, but she failed to realize that wouldn’t work for this, as it was her brain dysfunction, not infection. I sat out in the hall bawling and raging. I had to have the trauma nurse paged to make this stop. If I could have punched out that nurse, I would have. If it were me now, I would have requested her to not be Alex’s nurse again. There were a couple who we asked to not be assigned to her a second time. I have to say, there were at least six nurses who were fantastic. Alex’s case was very complicated that required constant tweaking.
I am just reflecting as I can only imagine what this other m
I have all this information from our journey with her, but I am strugging with knowing how to use it to help this other mom. I know she has to discover what works for her. I want to tell her how I did it, but I cannot use someone else’s’ tragic process to help myself. At the same time, I could be very helpful. This gives me an idea of how hard it must be for the trauma teams. They have a better idea of how things may turn out, but have to not say too much. It is a fine line to walk.
I also have to realize that this young mans’ brain injuries are unique to his circumstances, and it may end up completely different from our situation with Alex. I would never not want him or anyone else to die or not get better. I have to allow my feelings of anger and regret that invariably come when someone is granted a miracle that Alex deserved and didn’t get. She was such an awesome human being. I miss her terribly.