Not sure what the turning point was, but the day he started to withdrawal from pain on Day 5, was significant for me regaining my strength.
I really wish I could say that there was so many positive people that filled us with hope but that would not be the truth.
I wonder what jaded so many of the health care professionals we encountered in those early days. I understand that dealing with so many cases day in and day out would eventually possibly numb you to every trauma that comes but when did so many forget to be human beings with compassion? I have a lot of strong feelings and resentment towards most of that nursing staff and I honestly don’t think it’s because of all the emotions surrounding that time. It is because when someone has had the love of his or her life ripped away and the only thing that you have left to grasp on to is hope, no one has the right to try and take that away. I never asked for anyone to fill me with false hope, I just didn’t want to be constantly reminded how bad it really was. Even weeks after his accident they still felt it necessary to give me unsolicited advise about how disabled and how many deficits he was going to have. At one point I even asked one of his nurses ” do you believe in miracles” and you know what she rudely replied back ” there’s not going to be any miracles here”. Three days after his accident I had another nurse trying to convince me that Shawn will never have any real life so I should think about what he would want. I think maybe we should let him wake from his coma before everyone jumps on the “cut the life support” rally. We figured that was where they were going and trying to get an idea where we stood on that. They never did admit that was what they were doing but they did want to call a “family meeting” which just happens to get cancelled. The word was heard loud and clear that I was never giving up hope!!
As time went on and the length of the coma went from days to weeks I still held on to my hope and I never faltered regardless what happened. I would stay by his side and we would face this together. I wish that I had taken notes of those negative staff members and go back there now and show them that there is life after a severe brain injury. At one point I said that 50% of Shawn was better then no Shawn and once again met with negativity and the nurse commented back ” you are lucky if you get 10%”. My all time favourite idiotic comment was from a neuro surgeon who was reviewing his chart with a med student. Right in front of his sisters and myself he says to the student ” patient has a 5% chance of living a normal life.” Hello we are sitting right here!! Shawn’s heart rate started racing and that was proof enough for us that even in the coma he was hearing that. That was the last straw and I called a meeting with the nursing supervisor and logged a complaint. I found out later from one of the good nurses that in his file was a bright coloured sheet at the very front that no staff was to discuss any negative feelings or opinions with me. Any conversations about Shawn’s condition and possible outcomes were not to take place at his bedside but out of earshot. Coma or not!! If I can really express one thing that I learned about that time is that you have to keep things positive and you have to have hope. You need to protect the person lying in that bed and not think that just because they are in a coma and unresponsive that they can’t pick up on what is being said and the emotion in the room. It may sound like my memories about the days in ICU are negative because of the fact that he was in ICU but everything I am saying actually happened and those nurses actually did treat us like that. There is not a single person, aside from the thoracic surgeon, in that ICU, that showed any compassion. Once he was moved to Step Down unit on the neuro floor we were with nurses that dealt with nothing else but brain injury and saw for their own eyes that amazing things could and do happen. There was one nurse named Laurie, that I would like to go visit someday, that told me after just spending a short time with Shawn in her care that she could see in his eyes that he was in there and not to give up hope. This was a complete stranger to us yet she knew how important hope was and how people can make huge gains when surrounded by love and that is what I wanted to hear and believe myself. Even though the majority of negative comments were from those ICU nurses it still didn’t stop the odd person making sure I knew that Shawn could become a different person from his brain injury. I wonder why some people felt it their place to remind me of this all the time. I heard it all, how he could be, not remember who I was, who he was, be violent, be aggressive etc but none of it mattered to me because I loved this man. Call me naïve but I just didn’t believe someone so incredible could completely turn into someone so opposite of whom he was, and I was correct. It may come across that I am still very angry and bitter about how I was made to feel and treated back then, I am, no doubt about it. When does compassion get abandoned when you work in a profession that is suppose to save lives, just a thought.