Chapter 8.)
You Gotta Have Faith.
Meeting of the Minds. What does it take to make people understand you? For me, it meant having a conference called “The meeting of the Minds.” Getting everyone on page one and making sure of no more foul ups, I tried having a ‘meeting of the minds’ once (while still on the ICU level) and got nowhere! Back in ICU, I was to have a 30 minute one-on-one conference with my son’s doctor every three days. Yeah right, what a laugh. Since we had advanced to the fourth floor, I thought just maybe things were looking up, particularly when a new doctor came to the waiting room and sat down and talked to me. The new doctor had a different title, he was known as a ‘Hospitalist’. Again, where I come from we don’t have different titles for physicians. Larger hospitals hire more staff, but I have to be honest, the many titles weren’t making any difference to me for improving communication.
It was the third day on the fourth floor and the Hospitalist said, “Whatever I needed, whatever “Tye” wanted” he would make it happen.” I said, “Well, I think it is way too loud where his room is located. The nurses keep him awake all night and the ice machine is constantly going.” I asked the doctor if there was a quieter room on this floor, he said “Oh yes, the room at the end of the hall, but there is a patient in there right now that just had surgery”. However, the doctor thought he’d be going right home. Am I surprised? Not the least, so I moved my son to the room three doors down the hall while waiting for the other room at the end of the hall. I liked the room at the end of the hall, as it was larger and it was the only room on the fourth floor that had carpet.
200 STEPS AWAY. One afternoon (while Tye was sleeping) I walked over to my tiny room to collect clean underwear for him. As I stepped back out of my room, I would count how many steps it was from my door to his door. With toe to heal, I began my walk from the room to the entrance of the hospital and up the elevator, down the hall to my son’s room was 200 (of my 6 ½ foot size shoe) steps. I walked into my son’s room and saw that he was just waking up. I placed the clean laundry on the shelf and sat down beside him. Then I took his hand and said, “Guess what son?” He looked at me and answered “What?” I said, “Did you know I am only 200 steps away from you?” He replied, “Oh ya, how do you know that?” I said, “Because I just walked it and counted it.” I thought maybe I’d get a smile out of him, but again no smile came to his face.
I would tell Tye, I’m only 200 steps away quite often throughout the stay on the fourth floor; it seemed to give him comfort. Saying simple little things like was all my son looked forward to hearing or even thought about.
Going The Long Haul. Being on the fourth floor seemed like we had arrived on a new floor of the hospital having to take all new tests and assigned all new doctors. A new neurologist looked at new CAT scans; an orthopedic doctor was called in to examine my son’s broken collar bone and scapular fracture. The new doctor said Tye was still at Rancho level 4 and that in 2 years, after everything we were to go through, only then would we see what level Tye would be for the rest of his life. I was to meet with the new neurosurgeon that afternoon. A second opinion in having a new neurosurgeon would make me feel better, so I thought. A rather large tall man walked into the small waiting room and sat down to talk to me about what he thought of my son’s recovery. He talked in a low stern voice, very serious and very businesslike. I listened to every word. My boy had sustained a severe head trauma and he (the doctor) went on to say that this was as good as what he thought my son’s recovery would be. He added that my son wouldn’t know numbers the way he always had in the past. Tye wouldn’t be able to return to the construction job he had, he would not be able to do ‘that’ kind of work again. He (my son) would go through anger times 3. I wasn’t sure what he meant by that at first, I sure learned fast later. The doctor went on to say that my son needed a comfort zone; he needed family (me) around on a very permanent basis. Tye must not have any stimuli, then the doctor looked right into my eyes and said that if he gets upset, or if he regresses, that he could stay there in that state forever. The doctor went over again the DAI (before and right at the time of the accident) and then into the TBI (the result of the accident). I sat numb again in a chair for about 15 minutes with this neurosurgeon who was very pleasant, but very serious and he finally ended his talk with, “You have a long haul ahead of you and I wish you all the luck in the world.” This wasn’t going to be easy, but he thought I was a strong person and I would be ok. Ok, he had no idea how I was at that very second. As he excused himself to answer his cell phone before walking down the hall, I shook his hand and thanked him. I thanked him for even taking 15 minutes out of his day to talk to me about the long ‘haul’ I was going to have with my son.
The hospitalist returned to tell me that he was putting Tye on the prescription drug Requip. The medication was to help with anger and shaking. The staff gives this drug for Parkinson’s disease. I was noticing that Tye had a tremor in his hands and the swaying back and forth from one foot to the other was another sign of the TBI and Parkinson’s disease.
In walking back into my son’s room, Tye had a question for me, “Mom where am I?” I said where he was and why he was there, just as I had done for days, but Tye couldn’t remember what I had told him from one day to the next.
By evening he once again asked me again the same question. He then asked what was wrong with him, he wanted to know what all was wrong on his body. I took out a sketch pad and drew a funny looking figure of a body. I started with the head and worked my way to the feet marking all the things that were wrong from the accident. Hearing what was wrong with him wasn’t getting through to him, but him seeing it was a whole new aspect to understanding the severity of it all. He stopped me when I got to the knee and said he didn’t want to know anymore. There would be many more days that he would ask me what that hole in his side was there for, or why are there stitches by his eye, but for now seeing a doll like figure all hurt was enough for him to grasp and handle.
Mirror, Mirror on the Wall, Who is the Fairest Man of All. One day back in the ICU unit, the staff had given Tye a mirror to see his face (right after he woke up from the coma). All Tye said was, “I’m sure messed up”. Now that he has a halo on his head, and walks around (bent over), he can walk to the mirror in his room and see for himself how messed up he thinks he is. He couldn’t get that close to the mirror and had a very hard time brushing his teeth, but then all he saw was a large black weird looking metal thing resting on his head and shoulders that he didn’t like. The pin holes from the halo that he couldn’t really see up close enough did not disturb him. He couldn’t see that the stitches around his eye he couldn’t see that well either, so he turned away within minutes and didn’t go back to the mirror.
A Mother’s Work Is Never Done. Every other day it is my job to give my son a full bed bath. Both my Grandmother and Mother used to call this a (spit bath). You take a small bowl of hot soapy water and a towel and bathe the areas that need washing and then dry the washed areas off well. My son refused to have the sitters bathe him and the nurses wouldn’t do it. They left this hygiene task up to the aids. I thought nothing of it from caring for my elderly Mother. I would go about the bathing as if I was a nurse that was just doing a job and having the patient get cleaned. I was very professional in my mannor of handling the whole thing. When it came to shaving his face, even the male physical therapists couldn’t believe how tender and careful I was with each stroke of the razor. I recall one day this same man said, “You are so good, you can see how you really care about your son”. I replied, “I’m just his Mom and I have three other son’s, so I’m well used to this kind of care, but thank you and yes I care for my son a great deal”.
Within a few more hours of this long and never ending evening, I looked at the mucus that was building up again around the trachea and noticed that the nurses on call weren’t even putting the bandage on correctly. We had asked that respiratory come and clean the trachea again, but all they replied back was, “Is it an emergency?” I stepped over to the bedside table where all the extra supplies were and took out a clean new bandage and tape for the changing of the trachea hole and I carefully took off the messy one and whipped off all the mucus away and placed a clean bandage onto the area and then taped the area. Tye looked over at me and said, “You did it better Mom, than that nurse,” and I just smiled back at him. Tye said he felt like he had a bad cold, and he had felt hot-cold, hot-cold all day. I was worried again.
Every day I would have either a new caseworker or some staff member talking to me about my son’s care. His insurance, his medicines or his therapy was all talked about on a daily routine. Therapy was limited on the fourth floor. Tye was on heavy narcotics and medicines that prevented him from having full or even part time therapy. Occupational, physical and speech therapy was to be administered to Tye every day for about an hour, but this was most difficult, considering all his injuries and medications. He was still not swallowing well; he was not getting any form of physical activity other than to walk the hall around the nurses’ station. He would go back and forth with a walker just to keep the legs exercised and the clots from forming.
Hope and the Gold Fish. 
One afternoon, I couldn’t take it any longer and I knew Tye had – had enough, so I walked with him as I pulled the stand that held his feeding tube all the way up the hall and down another one to the larger fourth floor waiting room to have my son see something new. There in the larger waiting room was a medium sized aquarium that had a few fish swimming around in the tank. There were large gold fish and couple of stripped fish. I would walk with my son over to the area where the tank was and as we walked around, anyone sitting in the waiting room would turn their head and stare at my son wearing the halo. Here came a tall young man, bent over, looking like the Hunchback of Notre Dame with a feeding bag attached to a roller stand and a walker. It was quite the sight to see, but what these people didn’t even stop to think about was, well we were in a hospital and, gee, guess he (the patient) had been in a bad accident. Everyone just likes to stare and then act like they weren’t staring. This would be my first public viewing of an injured son and me noticing people who are just are so cruel with their eyes and mouths. Tye would rest on the seat of his walker and look at the fish tank, but he only saw one big gold fish that he liked. Then we would walk over to an art piece that was hanging from the ceiling and he would glance at it just for a moment, and then say, “I’m really messed up aren’t I Mom?” With every comment, I always added the words, you are so much better than yesterday son, you are getting stronger every day. Back and forth we walked each day, up and down the hallway just to be able get to go somewhere different, and this was all my son had to look forward to each day. Back and forth from the bed to the window, it was all getting exhausting and so very sad. Each day and every evening I would sit for long hours and just talk to Tye. I would tell him about his Grandpa, talk about going fishing or tell him of a new life that I hoped that he would be having once he got out of the hospital. Each story, each thought, was to give my son some hope. That’s all we had right then, was hope. Hope that the medicine helped him. Hope that the doctor’s knew what they were doing in trying to deal with a traumatic injury patient. And most of all, hope that he could go home soon.
My heart was still aching for my boy every time I walked away to return to my room at night. I couldn’t understand all the strange things that were happening to him, but I tried my best to handle and go through each thing as it arose. The next morning, I was to meet with a neuropsychologist to talk about my son. I was already anxious, as I didn’t know if this new person would understand what had happened to my boy, or if he was he just going to council us about Tye’s childhood and all the questions a regular psychologist asks when seeing a patient for the first time? Would this man understand that my boy was different from than all the other TBI patients? Tye was my son and I wanted him to understand all the areas that were so fragile right now and to talk about for his recovery. I didn’t want some man to just ask a lot of questions, questions my son couldn’t answer and then write a thousand notes and be done with us. My evening (back at my room) was filled with all kinds of thoughts. Phone calls had to be made and paperwork filled out from the day’s experiences. Everyone called in the evening to see how (Tye) was doing. I had to replay the day’s events all over again for each and every caller so that everyone was filled in from the last call. It was exhausting; it was so painful to relieve the day’s events.
Still, we were waiting on the larger room to make Tye a little more comfortable, but it was taking a while longer. I would walk back and forth to the ice machine to get Tye ice chips. His swallowing was getting worse. I laid my head down on the pillow at night and would cry so hard as I would just be thinking of all I had gone through for the day, and then I’d cry some more thinking about what the next day would bring. My ‘hope’ was fading, but I still recall talking and trying to have faith. It was becoming so hard, so painful, and yet I had mastered getting my boy to the fourth floor without him having to be bagged and returned to the ICU area, so I guess something was working for the moment.
The day I was to visit the ‘shrink’ had arrived……continues in my next journal writings.
