Where did the "Personal" in Personal Support go?

Where’s the “personal” in Personal Support Worker Service Providers?  We have been requiring the assistance of personal support workers for 4 ½ years.  My husband received a catastrophic brain injury from a motor vehicle accident that left him with left-sided paralysis.  My strong, athletic husband was no longer able to get out of bed on his own and required the help of PSW’s for almost all of his activities of daily living. 

How do I as a wife and mother remain strong and hold my family together after such a tragedy?  I’ll tell you what you, you look to others for their help both mentally and physically.  You look to those that are in the business to help families, like ours, to make it work and keep our family together.  Aren’t these people supposed to provide the help that is so desperately needed?   You want to be the wife and “protect” the marriage and not inter with how you feel about your partner intimately.  That is why you give up most of your privacy and invite these support workers into your home.  

Every morning and evening they come and they go but at least you know that they are their to help to make things easier for you.  How is it that companies that are suppose to be the business to help, turn “personal” into “impersonal”?  They don’t see your husband or your family as real people with feeling, emotions and needs but as just as a dollar figure to make their bottom line.  When your husband begs for consistency and instead of offering it and providing those that are familiar, you deliberate withdraw the familiar and send employees unfamiliar and unqualified.  How can you ask a person to have strangers on a regular basis be part of the most private part of your day and be amongst your children and in your home?  These strangers wouldn’t be strangers, if your unprofessional attitude and lack of concern for a person didn’t cause you to withdraw that worker or you just can’t retain them long enough in your organization.   Don’t you think hardship has already hit our family without throwing up roadblocks!!  God forbid such tragedy ever befalls a weaker family because luckily for my family I am a strong, hard as nails advocate for my husband and family.   I won’t back down to your condescending bully tactics or continual need to unstaff us, just to show us who is boss.  How does the song go “ I get knocked down but I get up again”?  So unfortunately your pathetic company will probably continue to overcharge and unstaff the disabled and seniors in the community but hopefully more families come forward and speak up!

Finding the Right Team

Having the right support team was such a significant element in making the hospital stay and coming home successful.  Even when Shawn would come for weekend visits we never had access to a bathroom for him.  I am actually so thankful that he doesn’t have much memory about that time because he wasn’t allowed much dignity.  I know that he would still have chosen spending weekends at home, but he was only able to have bed baths and use a commode in his room.  I call it his room but really we just changed the dining room into a bedroom because he wasn’t able to get upstairs to sleep in his own room.  Until we finally moved from our 2-story house to our bungalow, he would ask every support worker to bring him upstairs.  He wasn’t able to understand that he couldn’t get upstairs and that it would be months before we were able to sleep in the same bed.  We were only able to fit a single hospital bed in our small dining room so even though he was home, I still slept upstairs in our bedroom.  I was getting further along in my pregnancy so even if I wanted to try and climb in be side him I was rather large and didn’t fit.  He was so hard to reason with cognitively and would do the most irritating things in the middle of the night.  As much as I was completely blessed that I could hear his voice you don’t really care too much about that when you are woken up in the middle of the night with him calling for you.  He would do this even after the baby was born and I would get so mad because I would finally get the baby to sleep and then Shawn would just start calling out for no reason.  I would give him the remote at night before I would head off to bed and put the sleep timer on his TV and for whatever reason he would crank the volume up.  He used to wear these plastic leg splints from his knee to his foot, almost like a boot, and he would bang them on the wall.  I would eventually move his bed to the middle of the room just so he wouldn’t wake the whole house up.  It’s kind of humorous now looking bad at the things he used to say and do and I would have no idea what he was talking about or why he was doing it.  About a year after he was home we had 2 great support workers that actually made a t-shirt up for him or all the crazy things he would say.  It was several months after he got home because he started talking about 6 months after his accident, but wasn’t saying a lot till about 8 months after.  Even when he started talking it was just whispers and it was months before the staff at the rehab hospital even heard it because he would stay quiet for them.   The days were so long at the hospital so the quietness and comfort of staying home on weekends was a relief.  Since I was in my 5^th month of pregnancy, there wasn’t much I could do to transfer and move him, since he was dead weight.  The agency that we had doing our case management also provided support workers so they sent out one their staff named Amanda to work the overnight shifts.  She would come around 7pm and stay until 7am and would take care of any of his need at night.  He regularly needed to be shifted in bed and was on G-tube feeds so changing the feed bags at night was necessary.  At the early stages of his recovery, he wasn’t able to swallow so all his liquid “food” was given to him via a G tube, which is a tube that goes right to his stomach via an incision.  He also was given his medications this way and they needed to be ground up and then mixed with water and a syringe is used to push the meds through the tube to his stomach.  Amanda was such an integral part of making Shawn’s visit home a success.  She become such a valuable person in our lives and continues to be to this day even though she doesn’t work with Shawn anymore.  She not only would take care of his personal care needs but once he came home for good she joined the rehab team.  We have had and still have some wonderful people come and go from Shawn’s team but Amanda is one of the few that we will make sure is in our lives forever.  I want to go into more detail about the obstacles of having staff in your home on a continual basis but I’ll save that for a future blog since I have some pretty strong feelings about it.  We have had some treasure, like Amanda, but also some absolute rotten ones, which happened just recently and I am sure will happen again since unfortunately it goes with the life we have now.  So as I mentioned at the beginning having the right team is so crucial and just because someone was recommended to you or your case manager recommends him or her doesn’t mean you have to stay with him or her.  It’s so hard in the beginning because it’s all very overwhelming but looking back I know I made some great decisions and I also know I should have made some changes earlier then I did.   We have gone though so many Personal Support Workers and Rehab Workers that I can’t even remember most of their names but the ones that I do remember are the ones that impacted our lives in such a positive way.  I was very fortunate that not only did I have someone like Amanda helping me through it but we also had the most wonderful, caring legal team that were huge advocates for us.  When Shawn was in ICU, it was my brother that suggested we get a lawyer as soon as possible.  At the time you aren’t thinking about such things like that but it was his strong business sense that knew the earlier you get them involved the better you and your loved ones best interests are protected.  It was probably within the 1^st week that we met with several law firms and decided to go with Gluckstein and Associates.  Dianne, the firm’s medical consultant, was such a warm person and I immediately feel in love with her bright personality and kind manner.  I found it very interesting that the nurses in ICU seemed shocked that we found a lawyer so early on.  I mean what business was it of theirs other then they had to start crossing their “t”’s and doting their “i”’s, which you better believe happened fast.  All of sudden Shawn was getting x-rays on his hand and it was being treated for a fracture and we didn’t even know it was fractured.  It was probably a week or more after his accident that this was even addressed by the medical team.  The sad part of this whole thing was that they wrapped and bandaged his hand but kept his 2 middle fingers bent down in the bandage.  So 6 weeks after taking the bandage off , those 2 fingers had contracted so bad from being left like that to this day he is not able to straighten them out.  There is nothing that can be done about it now since they are on his paralyzed hand so surgery is out of the question because he cannot do physiotherapy to strengthen them.   Anyways, having a legal team on board allowed us to push for more team meetings with the doctors in charge back in ICU but it also set the ball in motion for the insurance claim.  Dealing with insurance companies is a nightmare so having strong legal representation makes it a tiny bit more bearable.  Dealing with insurance adjustors is a whole other blog subject!!

Our time at Rehab

“Recovery is not so much about regaining what is lost, but loving what remains.” –The Never Ending Journey

In my mind, I thought that once we got into rehab that it would be the road to everything going back to normal.  Not to say that I am not completely grateful the gains that were made but it had become clearer to me that things were a bit more permanent then I thought.   No matter what stage he was at, I always wanted more.  In the coma I just wanted him to wake up and he did.  Then I just wanted him to look around and he did, and then I wanted him to let me know he remembered me and he did.  It is endless and I could go on and on.  He was one of the few patients in the Slow to Recover that was allowed and able to eat and I remember how envious the other family members were.  As much as I was happy for this happening, I was also sad for those I came to know and care about while Shawn was in rehab.  He spent a total of 4 months there and once he was selected to take part I decided to leave work.  By this time I was about 5 months pregnant so I was able to start my maternity leave early.  It was so important that I be there for him everyday during his therapies to motivate him as well as learn strategies that I could use with him.  There was a lot of downtime in the day so I would work with him on areas like speech and fine motor skills.  It was fairly soon after arriving that his Speech Therapist figured that Shawn could communicate if given a letter board.  At first it was just the words “yes” and “no” and he would point to which one when asked a question.  What an amazing revelation that was to know that I could talk with him this way and he could answer me.  From there he graduated to a word board with all letters of the alphabet and numbers and he would spell words.  He was still very slow when pointing and would often tire easily before he was done so I kept it to short words and sentences and basically filled in the blanks.  I remember the first time we had complete 100% confirmation that his long-term memory was intact was when he was able to spell out our names.  My mom even asked him if he planned on marrying me one day he right away spelled about “Y-E-S”.  I was so happy because you never know how a person can change and if your love for each will be as strong but ours definitely was and continues to be!!

Another amazing step in his recovery was when they were able to stand him up in a standing frame and he started wanting to take a step.  He would take a tiny step with his right leg and the extreme tone in his left leg would just sort of let it sweep forward.  We were originally told that movement would come back in his left side but as time went by the rehab team was reporting to us that he was definitely paralyzed in his left side (hemiplegic).  To this day he has only regained very slight movements in his left side but we don’t give up hope and continue to work that side just as hard as we did back in rehab.  Everyday was pretty much the same when he was doing rehab and there was always a lot of free time and the weekends had no scheduled therapy.  The beginning of the day was a group session where all 6 patients and their family members would meet and discuss what day, month and year it was and also asked to describe the weather outside.  There were large cards and the therapist would display 2 choices to each patient and they had to decide between the 2 cards.  Some patients were unresponsive, some able to point to the right card and others just used blinks or eye glances.  Fortunately for us, Shawn was one of the few that were actually able to point to the right answers and in the entire time we were there, there was only 1 patient able to give the correct answer verbally.  Everybody in this program was deemed “slow to recover” and that criteria meant that you had to be fairly low scoring on the Rancho Los Amigos Scale.  The scale scores as follows:

I. No Response
Patient appears to be in a deep sleep and is unresponsive to stimuli.



II. Generalized Response
Patient reacts inconsistently and non-purposefully to stimuli in a non-specific manner. Reflexes are limited, and often the same, regardless of stimuli presented.



III. Localized Response
Patient responses are specific but inconsistent, and are directly related to the type of stimulus presented, such as turning head toward a sound or focusing on a presented object. He may follow simple commands in an inconsistent and delayed manner.



IV. Confused-Agitated
Patient is in a heightened state of activity and severely confused, disoriented and unaware of present events. His behavior is frequently bizarre and inappropriate to his immediate environment. He is unable to perform self-care. If not physically disabled, he may perform automatic motor activities such as sitting, reaching and walking as part of his agitated state, but not necessarily as a purposeful act.



V. Confused-Inappropriate, Non-Agitated
Patient appears alert and responds to simple commands. More complex commands, however, produce responses that are non-purposeful and random. The patient may show some agitated behavior it is in response to external stimuli rather than internal confusion. The patient is highly distractible and generally has difficulty in learning new information. He can manage self-care activities with assistance. His memory is impaired and verbalization is often inappropriate.

VI. Confused-Appropriate
Patient shows goal-directed behavior, but relies on cuing for direction. He can relearn old skills such as activities of daily living, but memory problems interfere with new learning. He has a beginning awareness of self and others.



VII. Automatic Appropriate
Patient goes through daily routine automatically, but is robot like with appropriate behavior and minimal confusion. He has shallow recall of activities, and superficial awareness of, but lack of insight to, his condition. He requires at least minimal supervision because judgment, problem solving, and planning skills are impaired.



VIII. Purposeful Appropriate
Patient is alert and oriented, and is able to recall and integrate past and recent events. He can learn new activities and continue in home and living skills, though deficits in stress tolerance, judgment, abstract reasoning, social, emotional and intellectual capacities may persist.

Shawn was actually one of the older patients in the program, as typically most of them were teenagers or young adults.  I remember looking at photos of other patients posted around the rooms and it was so upsetting to see who they were before.  Most of the patients were victims of motor vehicle accidents but there was one overdose and another was an aneurysm.  The length of stay in this particular rehab program is generally 4 months so we did see a few come and go and I often think about some of the families that I got close to and wonder how they are doing.  We talked about staying in touch but we never did because as I have learned once you get home life becomes so busy and you barely have time or the freedom to really do social things. 

So as I was saying about a typical day in rehab, there was the group session and then we would have a schedule given to us each morning so we knew where we needed to be.  Generally Shawn would have OT twice a week, PT 4-5 times a week and Speech twice a week, the rest of the time was filled in with various activities.  Sometimes we would have so much free time that we would watch TV together or we would go on a walk.  Other times he would have time with the Rehab Therapists and they generally had him cycling on a special bike called a Motomed that exercised not only his legs but also his arms.  Once a month there would be recreation activities like an outing or play cards or Wii with the other patients and their families.  Weekends were the worst because there was absolutely nothing going on and we would just “hang out” in the hospital and go on a walk, sit outside or just watch TV.  It was 2 weeks after he entered the rehab program that I was actually able to bring him home for the first time.  We started off slow with just a day trip and then soon after overnight visits and he would come home for the entire weekend.  I really think that because I pushed the home visits early on that is what made huge gains in not only his memory but also his motivation to get better.  

The trek to Community Hospital

Trauma Hospital to Community Hospital = very stressful!  Shawn had spent about 6 weeks in the Trauma hospital and it was their policy to repatriate patients back to their home hospital within 4 weeks of their arrival. Nobody told us this was going to happen until about the 4-week mark and we fought that happening until about 6 weeks.  It is not that I had anything necessarily against our community hospital but I just felt that Shawn would have better care staying on the Neuro floor.  I seemed in his best interest to be dealing with doctors and nurses that specialized in brain injury.  Not only did our home hospital not have a dedicated rehab centre but it also had no neurologists.  While in the trauma hospital, Shawn was visited by the Neurologist that ran the Slow to Recover program.  She oversaw brain injured patients and basically determined if the program will benefit him or her and then places them on a waiting list.  The Slow to Recover program for our city was located about 45 minutes from our house but it is also the only program in the entire province and there are a total of 6 beds only.  The program is different from other brain injury rehab programs since the patients that enter it may or may not still be breathing with trachs, could still be minimally conscience but all are considered “slow to recover”.  This is where Shawn fit in.  When we left at 6 weeks, Shawn still had a trach, non-verbal and was awake a small portion of the time.  Even though I was still very nervous to go to a hospital that I felt wasn’t as “experienced” as dealing with brain injury it was not overall a bad experience.  In a way the events that played out were helpful in Shawn getting into rehab sooner.  The standard to be accepted into a Slow to Recover program is generally 6 months post injury, so at 6 weeks we knew we a lot of time to wait. 

Once we arrived the accepting physician, who was a surgical doctor because they did not have any Neurologists or Neuro Surgeons, saw Shawn.  I wasn’t sure how to take her at first because she seemed pretty blunt and upon meeting Shawn and I the first day, she wanted to let me know how bad his injury was.  Right away I was thinking…here we go again!!!  However, once spending more time with Shawn and seeing the alertness in his eyes when he was awake she became more optimistic.  It was fairly early on that they had OT and PT start doing some exercises and various therapies with Shawn.  They did not have much experience with this type of injury but that didn’t stop them from getting right in there and doing what they could.  They worked at tracking objects and did range of motion and also made sure the nurses had him out of bed and in a wheelchair daily.  He didn’t have much tolerance to sit for a long time in a wheelchair but it gave us a chance to go on walks and get outside and look at other things other then a hospital room.  There still wasn’t a lot of rehab going on and I was getting very nervous about losing valuable time.  Along with Shawn’s sisters , I would do my own rehab with him.  I would show him pictures and talk about people in the pictures, lay out large puzzle pieces and he would work very hard to put them together among a few things.  One thing that was very irritating was that they seemed so nervous to make any changes to the way his care was when he left the trauma hospital.   For example, we desperately wanted the trach to be taken out but first they had to “cork” it for several hours a day to ensure he could maintain breathing on his own.  Even though he was breathing with no problems once we started this, it was weeks and they still didn’t want to remove the trach.  It was when he went back to the other hospital for some specialist appointments and follow-up that they just removed the trach.  Protocol is usually to remove within 5 days once a patient is breathing on their own with it corked and like I said the community hospital had let it go for weeks.   Another issue was with Speech.  I knew she was very out of her league but she took no real interest in finding a way that Shawn may communicate or even access his swallowing for that matter.  When nobody was looking we would put a tiny bit of pudding on his tongue and he would swallow it with no difficulty.  I have to say that this could be dangerous because he could have aspirated, however his sisters are both nurses and knew by watching him that he would be able to swallow the small amount.  One of the biggest screw-ups that actually haunted Shawn for months but on a positive note landed him in rehab sooner.    Shawn was suffering from something called “drop foot”.  This happens when someone is not only in a coma for an extended period but also when they are immobile for a long time.  Your feet just drop due to weakness, muscle/nerve damage and/or paralysis.  What should have happened early on is that he should have been fitted for splints to hold his feet up but that didn’t happen.  With a lot of persistent we were able to have the staff order in some leg splints for Shawn that he was suppose to wear periodically throughout the day.  They are never intended to be worn for long periods of time especially when you first get them because they can cause blisters and skin breakdown from the pressure.  All it took was one nurse to put them on him incorrectly and he ended up with a blister on his heel that took him over 4 months to heal.  While he was a rehab he was under the care of a wound nurse, that is how bad and deep that blister became.  In a way that skin breakdown was one of the factors that lead to him getting into rehab quicker then expected.

Going Home for the First Time

I barely ate or slept much in that first week and had to be reminded that I needed to stay healthy for the baby.  The only thing that consumed my thoughts were Shawn and being there for him.  I did force myself to eat bananas and drink milk because that is all I could stomach and I knew was nutrious.  Kathy, Karen and I were spending 12+ hours a day at the hospital and only leaving to sleep at a nearby hotel, that I ended calling my home for 5 weeks.  It would be 5 weeks before I would return home and face the memories and emotions that went with returning to the home that Shawn and I shared.  The day that I packed up at the hotel and drove the 50 minutes home I thought I would be fine and felt prepared for how I would do once I go home.  I pulled the car into the garage and just broke down.  I am not sure how long I sat sitting in the garage but it was quite awhile and both the kids were so supportive and just sat in the car with me until I went inside.  I felt okay once I got inside and started unpacking my things from the hotel.  I thought if I just walked around the house and dealt with  being there right away I could be strong again.  The first thing I did was go downstairs, which was “our space”where we watched TV together and the back door leading to the hot tub, which we used every night.  The first thing I saw was Shawn’s shoes sitting by the back door and I started crying again.  For most of the night I lied in my bed and just cried because I just didn’t know how I was going to do this without him by my side in this house.  It was our house and filled with so much love and so many memories.  I went around our bedroom smelling his pillow and his clothes trying desperately to remember how he smelled and felt.  This was not the first time or last time that our post accident memories would consume me. I still have moments where our loss overwhelms me but I have just learned to cope with it better.  Luckily we were able to move from that house and start to make new memories in a new house.  I don’t very often think about the “what if’s” anymore because I need to be strong for Shawn.  I would never want him to think that I don’t love him just as much and always want  him to know that I am so happy to have him in my life, that way or this way.    I do wonder what kind of father he would have been had this not happened and I used to think about what we would have been doing if the accident would never had happened.  Shawn and I did everything together and barely were ever apart.  I couldn’t fall asleep when he wasn’t lying next to me and on football Sundays I would wait up for him just so that I could fall asleep with him close.  It was going to be almost 6 months before I would ever be able to lie beside him and even longer before I was  able to sleep beside him.   So as much as this was all happening to Shawn and I, the kids were having to deal with the loss of not only their father being around but also their mother.  I was living at the hotel and my mom was taking care of the kids and had moved into our house for the time being.  I was only seeing the kids for brief amounts of time when my mom would bring them to the hospital or on the weekends they would stay the night at the hotel with me.  The first time our daughter would see Shawn, in ICU,  she almost fainted at his beside.  It was not from seeing anything bloody but from seeing the man she loved so dearly lying in a hospital bed hooked up to many machines.  Our son on the other hand took several weeks before he could see him.  I am not sure if it was fear or denial but he just didn’t want to see him that way so I gave him the time and space he needed and eventually he came around and spent many hours at his bedside.  Our daughter was a natural at looking after Shawn.  She took a special interest in helping keep him “looking good” when he was in the coma and she would cut his fingernails and toe nails, brush his teeth, comb his hair, put lotion on his face, hands and feet and even learned how to suction his trach.  I think this was her way of coping and she was so loving and so amazing that I always thought that the medical profession was her calling.  Those kids had to deal with more then any child should have to deal with and it definitely changed them as people.  They were only 12 and 9 when the accident happened.

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.

My New Vocabulary

Unless you work in the medical field or have experienced something as traumatic as we have you probably have no idea, like me, that there was so many “words” out there to describe and prognosis a brain injury.  I began to live and breathe my new found vocabulary while being completely consumed by things like Glasgow Coma Scale, posturing, shearing among a few.  The worst thing in the world to do at a time like this is to start “googling” about these words because there’s nothing very positive to read.  The first time I ever heard the term GCS (Glasgow Coma Scale) was on the paramedics’ report that my brother and I had read shortly after I arrived at the hospital.  Shawn’s GCS was 3, we thought that maybe a 3 was a good thing and that the lower the better, nothing to base this on other then trying to stay positive.  Well I found out when Shawn’s sisters arrived at the hospital and read the paramedics’ report that it was a very bad thing.  Glasgow Coma Scale is what EMS and doctors to access someone’s level of consciousness after a head injury use.  The score you receive is basically a good indication of how severe the brain injury is and also a basis to determine what type of outcome to expect.  The scale ranges from 3 (deep coma or death) to 15 (fully awake person).   The scale looks like this:

Feature	Scale	Score
Eye Opening	Spontaneously opens eyes	4
	Opens eyes in response to voice	3
	Opens eyes in response to pain	2
	Does not open eyes	1
Verbal Response	Orientated	5
	Confused Conversation	4
	Words (inappropriate)	3
	Sounds (incomprehensible)	2
	Makes no sound	1
Best Motor Response	Obey Commands	6
	Localize to painful stimuli	5
	Flexion to painful stimuli          - normal	4
	- abnormal	3
	Extends to painful stimuli	2
	No movement	1

Shawn’s GCS of 3 was based on a 1 in each category.  The severity is based on how you score.  A severe brain injury is a GCS of less then 8, Moderate is 9-12 and Minor is over 13.   So even though his nurses and doctors and my own family tried to persuade me from “googling” all of this, I still did.  I wish I had listened and taken their advice because when you have so much uncertainty in your life and the person who you love so much is lying there unconscious the last thing you want to read about is all the worst-case scenarios.  On top of having to understand what all this meant for Shawn’s future, I had to cope with all the test results and diagnosis that we were getting.  Even though there was some conflicting opinions they all agreed his deficits would be severe and long term. 

It was sometime in the afternoon that next day, after his accident, that Kathy, Karen and I meet with the neuro surgeon that came to visit me in the early hours to tell me about the “2 small brain bleeds”.  The brain bleeds were in the left side basal ganglia and the right side thalamus and the CAT scan also showed as described at the bottom of the report “ the constellation of findings are in keeping with significant shear injury”.    Shearing, as I was to learn is a Diffuse Axonal Injury and because of the nature of this type of injury it is very difficult to determine to what extend of brain injury Shawn would have.  We also had the unknown of whether the time he went into cardiac arrest on the operating table caused lack of oxygen to the brain, known as Hypoxia.  Diffuse Axonal Injury is a very common brain injury that happens, especially when it is something so traumatic like Shawn’s accident because the brain gets thrown around in the skull.  The medical definition of DAI explains that the major cause of damage is destruction to the axons, which are the neuro processes that allow one neuron to communicate with another.  The connections between the neurons get stretched, damaged and completely broken.  One of the articles that I had read about this type of injury said that 90% will never wake up and the other 10% with have a very poor prognosis.  So like I said and what others warned me against, don’t go looking for answers on the internet, it will only upset you.  I watched a movie once that used this analogy to explain what happened with Shawn’s brain… Imagine that neurons are cars and the axons are the highway, suddenly there has been a major accident on the highway and everything has come to a stand still.  Within time some of the cars (neurons) will not be affected and can continue on home, others will be able to find alternate routes home which may be quick or may be long depending on how far they need to go, and others will just never make it home.  Now Shawn’s CAT scan did show bruising in pretty much most of the brain but the main concern and most of the discussions we had with doctors were around the Diffuse Axonal and the bleeds in the Basal Ganglia and the Thalamus.  So the Basal Ganglia is located in what is considered the “deep” brain area and its' deterioration is what is responsible for Parkinson disease primarily.  Its’ function is movement coordination and voluntary movement (stopping and starting).  So a lot of times with Parkinson patients you can see them have tremors and this is because this area has been affected.  I am in no way trying to sound like I have any medical background, just basically going on what I was told and have read over the years.  I know the basal ganglia have many other functions but this is the main one and the one that has impacted Shawn’s life.  The thalamus is located in the mid/fore brain and is kind of like the mailbox of the brain.  It plays a large part in relaying messages to the cerebral cortex and coordinating motor responses.  It just seemed like a devastating blow after devastating blow anytime we received new information from the doctors.  When we were given all this information there was still one test that had yet to be done and that was an MRI.  The CAT scan can show the doctors what type of injury there is to the brain but it doesn’t show how deep of a bleed it is.  So even though we had all this information we still didn’t know if the bleeds and injury to his brain had penetrated deep enough to know if “the lights may be on but never no one was ever going to be home”.  It was probably close to a week before the MRI was even performed and I barely ate or slept waiting for that very important piece of the puzzle. 

Posturing is something so deceiving because when you see it happening it almost resembles “purposeful movement” as I learned to refer to it.  Everything was based around “purposeful movement” and sometimes I wanted to rip the eyes out of those nurses who would want to make sure that I knew it was NOT purposeful movement.  So posturing is movement that you definitely do not want to see after a head injury.  Shawn was posturing for a few days after his accident and it terrified me because that meant that the messages to his brain were short-circuiting.  I am not sure how common it is to happen but by day 4 and we were seeing no signs of it anymore I was relieved, for the time being.  It you look up posturing and the definition, it once again talks about the presence of posturing being an indication of severe brain injury.  It states, “It is an involuntary flexion or extension of the arm and/or legs, indicating severe brain injury”.  However, once the posturing started to disappear, he started to slightly withdraw from pain stimuli even though he was still in a medically induced coma.  I remember Kathy, Karen and I were about to call it a night and head back to the hotel when an excited nurse called us back into Shawn’s room.  It was slight but he withdrew from pain stimuli, they stick a sharp pencil into his finger, sounds mean I know.  We were so happy and it felt so promising that I actually ate a full meal for the first time in days!! 

I really wanted to try and stay away from sounding so medical especially because I don’t want to take away from all the emotion and anxiety surrounding that time.  However, in order to really grasp what we were dealing with, I want to paint an exact imagine of how serious this all was.  To this day, many people that weren’t part of our lives or around us that much, have no sense or idea of what it was like.  I am a pretty strong person and not an overly outward emotional person, which is different then not being emotional.  I just didn’t share a lot and usually kept my feelings private but back then I was a mess.  I could not carry on a conversation or fill family and friends in without bawling.  I pretty much left it up to family to talk to everyone and keep them updated because I was just so devastated and completely emotionally a wreck.  I am not sure how long I was in that state but it seemed like awhile but realistically maybe a week.  Once I picked myself up and pulled myself together I knew that we had a long road ahead and if we were going to get through this I needed to focus on one thing, and that was thinking positively and being there for Shawn no matter what happened.