Wednesday, February 27, 2013 - Letting Go

Going through a major medical crisis of any type is incredibly taxing.  From the onset of the medical crisis through the healing process, your life invariably changes in some fundamental way.  The person involved, and often their families, have to adjust to those changes. 

It’s like being plunged blindfolded into a large body of unfamiliar water.  You know the surface is up there somewhere but you can’t see it through that blindfold so you swim blindly upward trusting that you will survive.  You break surface, gasp for air and then are forced to swim for shore, wherever that may be.  At some point you realize you have to trust in the current to carry you back to solid ground. 

If you’re lucky, support will be there for you;  a safe place to land as you learn about your limitations and figure out how to set reasonable, attainable goals for yourself.  You learn that you have to let go much of what once was in order to make room for the new. 

Today during music therapy, Marc did just that. 

Rebecca taught Marc “99 Red Balloons” on the bass. Then she handed him some red balloons filled with helium.  As she played and sang, Marc wrote what he wanted to release onto each balloon, except for one. 

Fear

Stress

Worry

The Past

The final balloon was reserved for the message Marc wanted to send to the world.

Love

And then he let them go.

Time to welcome in the new.

Friday, February 22, 2013 - The Second Week Home

The honeymoon is over. 

Someone, I forget who now, called the first week or so when a person returns home after a prolonged hospital stay “The Honeymoon Period”.    

I didn’t understand that expression at first.  How could that be?  Isn’t it wonderful for both the patient and the family to again be under one roof?  That’s why I can’t recall who threw out that term.  It was something I quickly dismissed, although I did find that it niggled in my brain from time to time that first week. 

Our first week was busy with appointments and getting Marc settled into life at home.  There was a new routine to establish and therapy appointments to fit into our lives.  It was rather exhausting but it was also very nice.  Marc was home and life was good.  We had adapted everything that needed adapting to Marc’s recovery needs and it was all working very well.

I knew the honeymoon was over last Sunday.   

We don’t take the walker upstairs at night because it is literally two steps to the bathroom and our bedroom is beside that, with the foot of our bed being just inside the door and to the right.  The walker wasn’t practical in this instance so we opted for me to be behind him as he walks those few steps.  I get up at night and walk with him to the bathroom when the need arises, ensuring that he is safe. 

That night I ended up sleeping just down the hall in our spare bedroom.  Marc had been tossing and turning when I went to bed at midnight and he was keeping me awake.  He promised he would call out to me when he needed to use the facilities. 

And he did.  Once. 

In the morning I awoke to a noise coming from down the hall.  I couldn’t place it so I peeked out the bedroom door.  There was Marc, very quietly inching his way out of the bathroom, clutching the door jamb as he rounded his way back into our bedroom. 

Busted.

Later that morning in the kitchen, I turned to see Marc carrying his cereal bowl and walking across the kitchen to where he had left his walker. 

Busted.  Again. 

I was furious.  Did he not get it?  He is still minus a bone flap on the right side of his head.  If he falls and bumps it he risks death or possibly severe brain damage.  With his balance not yet at optimum performance, combined with the left neglect, it’s a recipe for disaster. 

He couldn’t see my point of view and I refused to yield to his insistence that he is “okay”.  My job is to get him well safely.  We spent a frosty two days until we were finally able to talk it out and come to an agreement.  He would use his walker at all times or have me as spotter until we could speak to his physiotherapist later in the week.  We agreed that her word was law. 

Needless to say, his physiotherapist wants Marc using the walker, or my assistance, at all times.  She was also our tie breaker on the issue of walking while holding the walker with one hand and a glass or dish in the other.  She reinforced what I was trying to get across to Marc.  Whatever he wanted to carry is to sit on the seat of his walker so he has both hands on the handles for safety. 

The honeymoon might be over but at least life feels much safer now, at least from my perspective.    

After that little episode, the rest of the week went much smoother and ended with a real treat.  We chose this afternoon to return to the rehab floor at RVH for a visit.  Marc and I wanted to visit his old roommate who is still recovering from his stroke.  It was wonderful to see him again.

It was also nice to visit the staff and some of the other patients that Marc had gotten to know.  Two weeks ago today they cheered Marc on during his victory lap as he left the care of the hospital and wheeled his way to reality.  Today he was back as a visitor, free to leave when he’d had his fill. 

We got such a nice, warm reception from everyone we encountered.  It’s hard to explain, but part of me misses the rehab floor.  Don’t get me wrong.  I’m very happy not to have to make the trek to the hospital every day and I’m ecstatic that Marc is home.  It’s just that being there had become such a routine.  Everyone was so nice and Marc got such great care.  That’s the part that I miss. 

The honeymoon may be over but now the real living begins.  Marc continues to improve steadily and one day we won’t have to battle it out over his safety. 

I can’t say that life is getting back to normal because what was once normal is now a thing of the past.  We are now working on the “new normal” and discovering together what this next chapter of our life will look like. 

I’m pretty sure that whatever awaits us, it will be an adventure.

Wednesday, February 13, 2013 - First Week Home

Phew!  What a whirlwind week this has been. 

Marc got home safely last Friday and we had a quiet weekend, partly because we were snowed in Friday and most of Saturday, but also because we had decided that too many visitors right off the bat wouldn’t be a wise idea.  During Marc’s home visits the weekend before, he got pretty tired out from all the visitors.  Lesson learned. 

Marc is doing very well at home.  Because my mom lives with us and has a walker, incorporating his walker into the mix was a no brainer.  Helping him in and out of the shower is also second nature.  We passed that test. 

The whirlwind part started yesterday.  We had an appointment scheduled for Marc’s regular music therapy in the afternoon but then had to add in his OT appointment as CCAC (Community Care Access Centre) is starting to set up their in-home therapy sessions. 

That was manageable.  Then we got a call from his new physiotherapist and yesterday was the only day she had an available appointment.  That made three therapy sessions in one day.  Poor Marc.  He did very well with it all, however.  It was also nice to meet his therapists. 

Tomorrow the CCAC case manager is coming by to meet us and so is the social worker.  We may never need her services, but it’s nice to know it’s available. 

Friday Marc sees our family doctor and then I think we’re free and clear for a few days. 

We know it won’t always be this hectic.  Next week there will only be three therapy appointments and they won’t all be the same day.  Life will start to ease into its new routine as we embark on the next phase of this healing journey.  Marc is home and he’s getting stronger each day. 

Tomorrow is Valentine’s Day.   We are planning a quiet, candle-light meal at home. No cards. No flowers. No presents.  We simply don't need those things this year. We have all we need.  We have each other. 

That’s more than I could have hoped for back on December 8^th.   

Friday, February 8, 2013 - Home Sweet Home

It was nine weeks ago today, just after midnight as we were about to go to bed, that Marc suffered his stroke.  Nine long weeks that went from hoping and praying for his survival to cheering him on through recovery and rehabilitation. 

But when you think about it, nine weeks is a very short time, considering the severity of his bleed and that his chances of surviving were so slim.  Marc’s recovery seems like a miracle.  He has worked very hard to reach this milestone today. 

Today he got to ride out of RVH on a floor cleaner.

Okay, he didn’t actually ride out of RVH on a floor cleaner.  He didn’t even get to drive it and not because he got busted before he had a chance.  No, for once Marc got permission to do something. 

Earlier in the week Marc jokingly told Catherine that he should drive one of the floor cleaners to practice his driving before returning home.  The next day, Catherine surprised him by arranging for Marc to pose on a floor cleaner for a picture.  She emailed it to me after.  Just another reason why we love the rehab staff!

I woke up this morning to piles of snow in the driveway from a massive snowstorm that had blanketed the area since last night.  I was determined to get to the hospital for 11:00 am so I could meet Marc after his pool therapy and attend his graduation ceremony from rehab. 

I shovelled the porch, around the car and down the driveway to the road.  I just needed enough room to back the car out and I could worry about the rest later.  Just as I finished, I realized that there was no way I’d be able to get the 50 feet or so down the side street to the better travelled street onto which our house fronts.  We live on a corner and our driveway is on the side street.  Our small side street rarely gets plowed this early on.  My heart sunk as I realized that it could be closer to evening before they got to it. 

I started to cry.  I don’t think I’ve cried that hard since the night Marc had his stroke.  I was devastated to think that we had made it nine weeks, through all the hours of rehabilitation, just have to miss Marc’s final day and his graduation ceremony. 

I looked up at the sky and said, “Really?  You’ve got to be kidding.  We’ve come so far.  I need a snow plow right now so I can shovel out and get to the hospital.  Please.” 

I went back into the house and sat down with a cup of coffee.  I haven’t missed one day with Marc since this happened.  How could I possibly miss this?

Before I could figure out a way to get to RVH, I looked out the window to see a snow plow going up our side street.  I was dumbfounded. Someone up there must have taken pity on the woman standing in the snow having a meltdown.

I quickly cleared the mountain of snow the plow had dumped at the end of the driveway, had a quick shower and I was ready to go.  Just as I was leaving, a neighbour came by with his snow blower and cleared the other side of the driveway. 

I took this picture out of Marc’s hospital room window.

The rehab floor has a tradition.  They get their “graduates” decked out in their farewell outfits, stick a sign on the front of their walkers and clap them through the hall to the nurse’s station on a victory walk. 

Marc was one happy looking pimp. 

A final pose with his rehab angels.

I tried to take a video of Marc’s victory walk but all I managed was one second at the start and one second at the end.  I was crying (again) and hadn’t noticed that my phone’s video had clicked off. 

I was really upset to realize that I’d missed capturing such a momentous occasion.  I was being pretty hard on myself until Marc reminded me that we no longer sweat the small stuff and that at least I was there to share it with him. 

We made it through the snow storm and finally, after nine weeks, Marc arrived at home for good.   

 

We made it through the scariest time of our lives but we are together again and we will tackle this next chapter of our lives together.  Marc will continue his therapy and his path along this healing journey.  I will figure out how to support us and my mother.

Marc has taught me a lot the past nine weeks.  He taught me that we can face any obstacle and if we try hard enough, we can move past it. 

I have no doubt that there will be many more victory laps in our future. 

Thursday, February 7, 2013 - One More Sleep

One more sleep. 

That’s how much longer we have to wait until Marc is home for good.  Just one more little sleep. 

Last night’s overnight pass was great.  Marc is still healing and is used to the hospital routine of going to bed early, so he conked out at 9:00.  He was wondering how he’d feel sleeping in his own bed again since the last time he tried that, back on December 8th, it didn’t end well.

Turns out he had nothing to worry about.  He said he was asleep before I got down the stairs after tucking him in. 

I was worried that I’d be worried about him during the night and wouldn’t be able to fall asleep.  That worry was unfounded as well.  I only woke up once.  It was so nice to have him lying there beside me again. 

So much for all this worry.  The night went better than both of us expected so we feel very ready to get our lives back. 

I dropped Marc back off at RVH at noon in time for his physio.  They can have him for just one more sleep.  

It feels like Christmas Eve.  Tomorrow I'll get the best present ever.  Marc.   

Wednesday, February 6, 2013 - Overnight Pass

Marc had physio in the morning today so when I arrived, there was only music therapy before he was set free for his overnight pass. 

I just love how Rebecca manages to tie so many things into each session.  Working on the drums was great for following direction, coordination, left neglect, reading, and concentration.

After some practice, Marc was ready for more of a challenge. 

More listening and coordination.

Next week, Rebecca is going to meet us at our house for music therapy.  I’m sure she’ll be happy not having to lug all those instruments through a big hospital.  I know Marc will be happy to see her.  I think music therapy is the highlight of his week, especially since she is teaching him to play the bass guitar during part of each session. 

Marc is now home for the evening and seems pretty content sitting in his chair, watching our favourite t.v. shows. 

We could get used to this. 

Tuesday, February 5, 2013 - Field Trip

Today was the long awaited trip back to Sunnybrook to see Marc’s neurosurgeon for a follow-up visit. 

We went down in one of the RNR Patient Transfer vehicles.  Because Marc didn’t need to ride on a gurney, they took us in a van, strapping in Marc’s wheelchair.  I believe this will be the last day for that chair. 

We had a great driver who made the trip a lot of fun. We told him about Marc’s stroke and subsequent healing journey.  We discussed positive energy and the body’s ability to heal itself with the right mindset.  He told us that he sees it all the time.  He said he can tell the difference between the “patients” and “those in recovery”.   The patients decide that they are ill and will have a hard time recovering.  And they do. Those in recovery do just that.  Recover.  And usually quickly.      

Marc was happy to have the wheelchair when we got to Sunnybrook.  That hospital is massive with hallways that seem to stretch on forever. 

The appointment with the neurosurgeon went very well.  He asked a few questions and then had Marc walk for him and demonstrate his grip with his left hand.  He was very happy with Marc's physical recovery. 

He determined that Marc still has a fair amount of left neglect but was happy to hear that it is improving. 

The doctor decided that we wouldn’t schedule the surgery to replace the missing bone flap on the right side of Marc’s head just yet.  The wait time is about four months but Marc still has a significant amount of swelling in that area.  He had us rebook a follow-up appointment for April 2^nd.  If the swelling is down enough at that time, he will schedule the surgery.  We were surprised to find out that Marc will only require an overnight stay once they operate.  If all goes well, he will get to go home the following day. 

I asked what exactly happened that night on December 8^th.  Was it a bleed on its own or a clot that caused a bleed?  He said that it was a bleed first which resulted in a clot which they repaired afterward.  He showed us a model of a brain and indicated that the bleed was deep in the parietal-frontal area. 

He said that they have no idea what caused the bleed.  It wasn’t a tumour or aneurism so it remains “cause unknown”.   He said that it was likely due to Marc’s high blood pressure and that because there was no apparent cause, it shouldn’t happen again.  The key is to keep the blood pressure under control and for Marc to take care of himself. 

We filled in our transport driver on the way home and he gave us some really great tips on nutrition.  Marc and I are interested in incorporating more whole foods in our diet and cutting out as much of the processed foods as possible.

Marc has been given a second chance at life.  This is a huge wake-up call for us both.  We’re excited about this new phase of our life together and we’ll be making a lot of healthy changes to our lifestyle. 

As horrible and scary as this experience has been, perhaps it was a blessing in disguise.  It reminded us of the importance of our relationship and love.  It reminded us that we are human and as humans, how fragile our bodies truly are.  It’s time to stop taking life for granted and start nurturing our existence here on earth. 

Body, mind, heart and soul; each to be treasured for the gift that it is. 

Monday, February 4, 2013 - News, News and More News

Silly me. 

I forgot to take a picture of Marc with his new rollator walker.  Along with the walker came some great news.  He can use it on the rehab floor without supervision.  He just needs someone with him if he decides to go down to the food court.  Therefore, new rollator walker = independence. 

We filled in Marc’s physio and OT teams on how the weekend went and they were impressed that he made his own sandwich and chopped onions.  Apparently he also told them that he was tired because I made him chop firewood and stack it beside the house. I’m pretty sure they didn’t believe that part.

To get him back, Shannon had him do some other household chores in preparation for coming home.  He swept the floor under the exercise bars and he used the broom and a heavy belt weight to simulate pushing snow with a shovel.  I thanked them and promised that I would keep up the physio by making him do all the housework and snow shovelling when he returns home.  That’ll teach him. 

To add to the news, we are going by ambulance transport to Sunnybrook tomorrow for a follow-up appointment with the surgeon who performed Marc’s neurosurgery and saved his life.  I have a lot of questions for him including exactly where the bleed was and it’s severity.  I was so glad that Marc was alive after his initial surgery that I didn’t think to ask any real questions that day.  But mostly I just want to hug the man who is responsible for Marc still being in my life. 

And if that weren’t news enough, Catherine also said that Marc can have an overnight pass on Wednesday.   He gets to come home right after his physio and the rescheduled music therapy that afternoon and I will return him Thursday morning.  It’s all part of the baby steps toward coming home for good. 

I think that was all the news for today. 

No wait.  There is one more little bit of news that I almost forgot.  I almost forgot to tell you that Marc will be coming home, for good, on Friday after his swimming therapy.

Silly me.

Sunday, February 3, 2013 - Home Pass, Day Two

Our second home pass day went just as well as the first. 

Marc made up for lost time with Ceilidh and treated her to a big snuggle.  She was in doggy heaven. 

Cuddles

 Marc waited to have a shower at home today so we could make sure that there weren’t any problems for him getting in and out of our tub.  He did great.  I’ve been helping my mom in and out of the shower for years now, so this was a breeze.  Marc listened to my instructions and it went without a hitch.  He transferred to the tub seat like an old pro. 

In honour of Super Bowl Sunday, we made our traditional chili.  Marc chopped the onions and we called it OT.  He even demonstrated his skill at chopping with his left hand.  Show off.  He still has all his fingers, so we declared it a success.

Chopping Onions for Chili

Our family members popped by in shifts today for visits.  It started to feel like normal life.   I can imagine family get-togethers again and that feeling of fun and love that we used to share. 

A few snowflakes started to drift from the sky before dinner and Marc said, “Boy, the weather is really bad.  I guess I’m snowed in here.” 

Oh, I wish. 

There are a few more steps that Marc needs to accomplish during therapy and then he’ll be ready for home.  We want him home safely, so we will wait. 

Patiently. 

Sort of patiently. 

As patiently as we can. 

Tap, tap, tap, tap....

Saturday, February 2, 2013 - Home Pass

I picked Marc up at 11:30 this morning after showing a house.  Despite his concerns about me getting the wheelchair into the car trunk, I managed just fine.  It would take more than a little wheelchair wrangling to slow me down. 

Arriving at home was pretty emotional for him.  He missed it so much.  It’s exactly two months today since he had his stroke.  What a fitting anniversary, to be able to enjoy some of the comforts of home, even if it is only on a day pass. 

The first thing Marc wanted to do was cuddle Ceilidh.  The feeling was mutual, judging by the amount of dog hair covering him at the end of the day.   

Home & doggy cuddles

 The next thing Marc wanted to do was sit at the table, read the sports section of the paper and have a cup of coffee. 



Coffee...and more doggy cuddles

We didn’t have any trouble at all today.  I think it’s because my mom has a walker so it is just second nature for us.  He even made a sandwich on his own and just had me carry it over to the table.  At dinner he helped prepare some of the food while sitting at the table. 

Robbie came over and they played three games of chess. 

Chess

 Marc did really well.  He won the second game. 

It was wonderful seeing Marc smiling all day.  I’ve never seen anyone appreciate being home quite like he did today. 

Evening came far too soon.  We are really looking forward to tomorrow and spending a full day together again.  At least we know that we are in the home stretch.  Before we know it, Marc will be home for good and I won’t have to bring him back. 

Friday, February 1, 2013 - A Wii Bit of Balance

I arrived a bit later today due to a painting workshop so Marc and I just visited in the food court.  He had physio in the pool this morning which is always a favourite.

Since I missed physio today, I’ll share what happened yesterday.  The session was held in the rehab floor’s old dining room, which now houses a huge television.  Several of the patients on the floor are working on balance and are at roughly the same skill level, so they had a kind of physio party. 

One at a time the participants played a balance game on the Wii which had been hooked up to the television.  The others did other balance activities together while they awaited their turns.

Marc went first.

I thought it was a brilliant idea.  The trick was not to move your upper body and just use your lower body for weight shifting to get balls to drop down a hole.  The Wii provided instant feedback if you cheated. 

I love that everyone got to have some fun social time while using technology to aid in their rehabilitation. 

Just a Wii bit of fun on the rehab floor.