Chapter 11: TBI – 3 Steps Forward, 2 Steps Back

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There were some nurses who, during this time, were working hard to help get Pat physically strong enough to be ready for rehab, even though their main job at our hospital was acute care. They were proactive in getting him dressed in regular clothing, teaching him to use his own muscles to help move his body around, and using a mechanical lift to get him out of the bed and into a special chair so he could sit up for increasing lengths of time, which allowed us to walk him around a bit and give him a chance to leave his room.  At first he couldn’t tolerate it for long, but he got more and more comfortable with it the more we did it. They began to track his progress because one of them was familiar with the application process for rehab and she was getting necessary information and then trying to make sure Pat was learning what he needed to learn to meet certain requirements for acceptance.  We felt supported and encouraged in our efforts to get him strong enough to have a chance at going.

His own doctor was away during this time, but his replacement was on board and very proactive as well, making sure we knew what Pat was entitled to from the medical system, and advocating to make sure he got it.  When I met with him to ask how to make connections for Pat to be assessed for rehab, I found out he was already planning to be in touch with the Glenrose. After that he regularly contacted them for advice on Pat’s brain injury care and on preparation for him to get an opportunity to have their help and, like his regular doctor, held onto the goal that Pat would get everything he needed for his best chance.

Pat was starting to discover things on his own, and one day when we went to visit, we stopped outside his door to watch when we noticed that he was trying to pull himself up in the bed.  He had swung his legs over the edge and was trying to pull his upper body into a sitting position.  His nurse walked by and saw as well, and she told us he had been restless and moving around a lot, so we all went in to where he could see us and he wanted to sit up.  She helped us get Pat sitting up on the bed and we sat with him for a while so he could look out the window; he said he felt great and comfortable.

He heard the nurse mention that his “lines” were going straight back and wanted to know what the lines were, so we showed him the IV in his arm and the gastric tube in his stomach.  He hadn’t noticed or asked about them before.  It seemed to be a significant incident and the nurse noted it in his chart.  She was glad that we were there when he had tried to sit up, because without physio approval, they couldn’t do that kind of exercise with him, but they could allow family to do it if we chose.

I don’t remember for sure when he first made the connection between my face, my name, and that I was his wife, but eventually it was obvious that he knew.  It was clear all along that he knew me and was most comfortable and settled when I was with him, and I think he always knew on some level who I was and where I fit into his life, but connecting all three things took some time for him. During this time he began to vocalize the connections more clearly.

His overall health was still volatile, nutrition needed to be managed and changed here and there to keep his electrolytes balanced, and he still wore a brace to protect the neck fracture that was taking its own very long time to heal.  He continued to have good days and bad days and therefore so did I.

From my Journal, March 20, 2013:

Each day I get up and hope you have a good day and I do what I can to help you and each night I come home and miss you so much it breaks my heart. My heart is so heavy and I feel very lonely. I want to be with you and I want you to be OK. I want everything to be the way it was before the accident, but I don’t think it ever will be and I miss that. I love you so much and I hang onto that every moment. Whatever happens I will always love you.

One weekend near the end of March we noticed some significant changes that were encouraging and showing us that Pat was becoming more alert.  He was speaking more clearly, remembering a few short term things and starting to express himself in ways that were normal for us to see and hear.  Kate returned from a mission trip and when he saw her he remembered that she had gone to Jamaica to “work for the church”.  He seemed to remember things that had been discussed in his presence and could say that he had been in a car accident and that firemen had rescued him.  When we got him up and into the wheelchair, he wanted to go home and each time we took him outside he asked for us to bring the car around.

When visitors from work came he was able to make connections and we saw him smile and laugh about old jokes he had shared with them.  It was good to see how different people stimulated different memories for him.  He recognized several people from our church who came to visit which made us feel good about his developing ability to put things together from his past.

At the same time, it was hard for me to feel happy about small gains and still be so sad about the huge losses.  There were so many mixed emotions watching him learn, and start to notice things about himself, and I tried to keep my own pain away from him so he only saw good things and never knew my suffering.  I would later learn that all along he was very intuitive about my state of mind – when I was happy and when something was wrong – which I had learned from others wasn’t necessarily the typical ability of someone with a serious brain injury.

From my Journal, March 31, 2013:

When I visited you tonight I was hugging you and rubbing your back and I started to cry but I was trying not to let you see. But you could tell and you asked me what was wrong. I try not to let you know how upset I am about all of this so I wasn’t sure how much to say, but I told you that I missed having you at home and I just want you to get better. You seemed to understand and I told you not to worry about me, and that you are getting better all the time, and we just have to be patient. I guess that the more aware you become the more you will see my pain and I don’t want to upset you.

On April 2nd we got word that Pat had been accepted to the Glenrose and would be taken two days later.  It was news I had been waiting for but when it came I was apprehensive because I didn’t think he was actually ready to go and had trouble believing it was going to happen.

They transferred him on April 4th, I packed up and moved into the city to prepare for the next leg of our journey, and the first day we were there, it became clear that my initial response was warranted – this wasn’t a typical situation, Pat was not well enough to be there, did not meet their admission requirements, and he had only been accepted on a trial basis by a doctor who wanted to try to help him get well enough to eventually go to Halvar Jonson in Ponoka, but it didn’t look good.  In one short conversation that first morning, my hope went from higher than it had been in weeks, to a crushing low that left me feeling isolated and alone, unable to imagine the next step.  Pat was unaware of the whole thing and simply lay in his bed, giving the only responses he could to questions that were determining a course of action, and they weren’t good enough.

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