Chapter 7: TBI – What They Don’t Tell You

taking a break during a walk along the seawall in Vancouver

Taking a break during a walk along the seawall in Vancouver

Some medications would improve one part of Pat’s system and then cause another to react negatively, requiring adjustments or changes that caused other side effects and the day to day ups and downs dragged me through one emotion after another.  A tiny bit of hope here, a crash there.  I didn’t know at the time that this was just the beginning of the emotional roller coaster I would ride for the rest of his life as one carrot after another was dangled in front of me only to be snatched away as if I was part of a cruel game.

Had it not been for my cousin – a doctor in Vancouver with many years experience in cardiac I.C.U. – there are many things I wouldn’t have understood.  There are typical procedures and treatments, body system responses and reactions that are expected during the time after a trauma, and for doctors and nurses these are routine.  But for us, as family members, they are completely foreign and difficult to piece together.  So having regular contact with my cousin, who was able to explain whatever I was being told and how Pat’s body was responding and reacting to certain drugs or procedures, made the situation more clear and I was able to start looking at his recovery in blocks of time, rather than placing too much emphasis on each day’s specific events.

He was able to give me reasons for the way particular things were handled or explained to me by the I.C.U. staff, and warn me ahead of time of things that could happen as a result of Pat’s metabolic acidosis, things that might alarm me but were normal treatments.  And he explained what Pat could experience – and along with him the rest of us watching – coming out of a coma that had lasted so long, that it could be frightening for him and for us.  That in itself was a warning I would have been lost without.

Pat’s condition and response levels continued to fluctuate day by day but once certain things looked good enough, they would make a change in treatment, gradually weaning him from the respirator and moving the feeding tube from his nose to a more permanent plug in his stomach suitable for long term use.  After nearly a month in I.C.U., he was considered well enough to be moved to the Neuro ward across the hall and it happened suddenly, at least that’s how I experienced it.

The move was upsetting for me because I had grown used to the I.C.U. atmosphere (they called it ICU-itis), the staff, the routine, and the fact that he had a nurse with him twenty four hours a day.  On the ward, there were six patients for every nurse and I was very nervous about him ever being left alone in the room.  I had to keep telling myself that if the neurosurgeon who had cared for him all this time deemed it safe to move him, then he would be safe, and by the second day, after meeting some of the staff and watching their routines, I felt more comfortable.

Pat was starting to wake up, although no one ever told me he was out of the coma. I still don’t know when it was actually “official” but he started to respond in very small ways over the next three weeks.

From my Journal, February 5, 2013:

You were very restful most of today and I tried not to disturb you too much by talking or hugging you for long periods so that you could be peaceful. Sometimes you are agitated and I don’t know if you are in pain, frustrated, or just trying to move around, but your breathing gets faster and you seem uncomfortable so when you are restful, I feel better because you look calm.

I had another bad melt down today. I am getting worn out emotionally and not doing a very good job of being patient in the day to day waiting. I miss you so much. I was at Michael’s and when he came home I was a mess so he spent the evening with me at the hospital and then we had a late supper together. I don’t know what I would do without the kids right now. They have been so awesome in taking care of me, listening to my anxious thoughts and being there for me when I can’t stop crying. You would be so proud of them.

I haven’t had any sign of response from you the past three days, but tonight when I was leaving and you were agitated again, you seemed to calm down for a little while when I kissed your face and talked close to your ear. Michael noticed too. That made me feel good. I know this will be a slow process, but even a tiny little thing once in a while gives me something good to hold onto until the next time. I have to believe you will wake up.

He began around this time to show signs of delirium which would have sent me over the edge if my cousin hadn’t warned me about it and explained that while it would be disturbing for both Pat and our family, it was a good sign because it meant that he was waking up.  It was no longer an unconscious state, but a stage between that and becoming conscious. The fact that I had some advance warning about what might happen didn’t prevent me from experiencing my own distress at not being able to prevent his.  Again, I held onto hope that once we passed through this stage, he would be awake and on the road to recovery, that he would be OK.

Pat would get agitated, which escalated into moaning and hollering – sometimes we heard things like “help me” or “get me out” – trying to move around on the bed and requiring restraint.  His eyes would widen to a horrified stare at nothing in particular, he would cry, thrash, yell, and nothing calmed him.  I would be there holding onto him, talking to him, trying to reach him, and getting no response. And then, suddenly, he would hear my voice, and I could get him to look right at me and for just two or three seconds he was there with me, calm, breathing slowly, listening.  But then he was gone again.  It was so obvious, the change in his facial expression in those moments from blank and disturbed to calm and aware.  This cycle went on and on for days.  Each time I got a few of those precious seconds I would try to tell him everything I could think of before he was gone again, including reminding him of important things – as my cousin had advised me to daily – that he wasn’t in the car anymore, that he was alive and safe in the best hospital, assuring him that his family was safe and that no one else was hurt.

It was during one of the longer sessions, when Pat’s distress was escalating to a higher point than usual where I was unable to reach and calm him for even a few seconds, that I was approached by a resident doctor who needed my instructions about his code level.  Right there, right then, in the middle of an already frightening moment, I was being asked what they were to do about resuscitating him if the need arose.

From my Journal, February 11th – You were very agitated again most of the day but there were no moments of awareness like on Friday and Saturday, so it was hard to watch you go through such discomfort. Your breathing and heart rate became a concern because you were having such a hard time without any calm breaks, so they called in a resident doctor to assess you, and she ordered a chest X-ray and blood work, along with an ultrasound of your legs to check for any signs of blood clots, in case that was causing your difficult breathing. After she left, another resident came back in to talk to me about my wishes regarding your resuscitation orders in the event that something happened and they had to revive you or put you back on a respirator. She explained that people can’t go for a long time with such a high heart rate and the accompanying breathing issues, and wanted to confirm that you would be on full resuscitation, which of course I confirmed.

But when she left I cratered. The whole discussion just about finished me off. Thankfully Michael was there and he helped me to see that the questions probably should have been asked from the beginning but there must have been a blank on your record and they saw it and wanted to make sure they knew my wishes ahead of time in case of any serious concern.

Eventually the delirium seemed to pass and things got calmer.  Pat started to speak and respond in simple ways and while we had no idea how much he understood, we could at least take comfort in knowing that we were moving forward, but towards what, we had no way of knowing.

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