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.