Never Give Up Hope

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.

Coma

A coma is nothing like you imagine or how they play it out on TV.  There’s no sudden arousal, there's no talking to you and completely comprehending everything going on.  I think the coma was the worst part, even though early on the doctors said that Shawn would wake up from his coma, they had no idea when.  The initial Neuro Surgeon was the one that had told us on the 2^nd day that due to the locations of the brain bleeds, in his opinion, Shawn would wake up. However, he would have deficits in motor function and memory.  Sounded pretty simple but that was really before they knew the full extend that the Diffuse Axonal injury and the Hypoxia (lack of oxygen to the brain) would affect Shawn long term.  That particular doctor I was very impressed with, probably because his news was leaning more on the positive side.  The next Neuro Surgeon that came on the rotation reviewed Shawn’s CAT scan and believed that his deficits would be extremely severe and placed him on the low level of outcome, hated that guy!  It seemed every time you started to feel good about how things were going, someone would come along and just pull the blanket right out from underneath you.  Living with a constant knot in your stomach definitely takes such a huge toll on you both emotionally and physically.  I am amazed that our baby survived and my pregnancy continued because the amount of stress was overwhelming.  My doctor had told me that the body has an incredible way of protecting babies from outside stresses and she was right.  It was right after my first visit prenatal visit with her, just 6 days after Shawn’s accident that I learned of my first real life coma story.  It’s kind of amazing the way it happened, but after that appointment I asked Shawn’s sisters to take me to Chapters book store so that I could find a book on brain injury.  We walked in and there was a poster advertising a new author that had just wrote a book about his experience recovering from a brain injury!! What were the odds that this book would have this author coming to this book store in 2 days to sign copies of his new book?? I bought a copy and started reading and couldn’t believe it because this man had been in a car accident about 10 years earlier and had been in a coma and here he was writing a book.  It gave me such hope and the more I read I learned that he was in a very serious car accident and his coma lasted about 3 weeks and he had to learn how to walk and talk again.  Meeting that man in person and hearing his story gave me such inspiration when I needed it the most.  That was the last time I heard about a coma story from someone I met, it seemed like they started popping up out of nowhere.  The priest that came to give Shawn a blessing was also in a coma for about 3 weeks when he was child from a bicycle accident, the clerk at a retail store told us about her relative being a coma and they all seemed to be around the 3 week mark when things turned around.  Well it was a little over 3 weeks when Shawn officially was considered “out of the coma”.  There was no “hey, how’s it going” or “what happened” from him like you see in the movies, it was a simple eye opening that lasted just a split second and that was him coming out of the coma.  It started off so slowly with his eyes opening for a second until weeks later he had them open for 45 minutes straight and that was very exciting.  His eyes may have been open but there was no recognition and he was never tracking or following anything, he just looked straight ahead.  He never opened his eyes when you would ask but just spontaneously for a short time, sometimes only once a day and sometimes more.  Regardless I sat by his side and talked to him and told him about what was happening and who had visited or I would read him a book or put his iPod on for him.  Whenever his eyes would open, I would get right in his line of sight and even though he didn’t seem to see me, I knew he did and I knew he knew I was there.  Once in awhile he would squeeze my hand and even though I was told it was not “purposeful” I felt like it was and that he was letting me know that he was there and just to give him time.   Most people don’t remember their coma so it’s hard to say what exactly they hear but in Shawn’s case we knew he was listening and trying to show us that he was.  In one situation, a doctor ignorantly spoke to us in Shawn’s presence about his lack of any real recovery and to expect the worse, his heart rate raced as he was listening to everything that man was saying.  Other then the times he would squeeze my hand, he actually showed some movement when an old friend that he knew from childhood visited.  It was within that first week and his good friend Roy was speaking to him and Shawn actually lift his right hand up in response to Roy’s voice.  Roy was ecstatic and he came back in the waiting room saying, “he’s in there, my boy is in there!!”  None of this was ever given any regard by the medical staff, as they felt it was all reflex, they just didn’t know who they were dealing with.  Shawn is/was a fighter and it was him trying to let us know he was coming back to us.  I had read so many brain injury stories trying to get an idea of what to expect but none of them ever really addressed the coma.  I think that was largely due to the survivors writing those stories so that wasn’t a time they remembered and could only recount what they were told.  I do remember so that is why I want to share this with everyone and also share with Shawn, who follows this closely because he too wants to gain more insight into what happened back in 2008.  So as I mentioned, he came out of the coma after 3 weeks and it was a long long process before he was able to look at me, I mean really look at me and see me and show he knew who I was.  The first time he actually watched me walk across his hospital room, we had long left the trauma hospital and he was repatriated back to our local community hospital, which was 6 weeks after his accident.  Some of the great ideas we had been told or read about back during the coma were to not only talk to him but also heighten his other senses with smell and touch.  I would find things that I knew had stronger smells, like cinnamon, and also smells that were familiar to him, my body lotion for example.  To this day the smell of Bath and Body Works White Tea and Ginger body lotion reminds me of the ICU and that hospital, whereas before that it was my favourite smell.