Reflections…

In all this time I had gotten so used to talking.  I would talk to my husband’s doctors.  I would talk to the nurses.  I would talk to friends and family members.  I would talk to the officers who worked with my husband.  Everyone wanted to know how he was doing. There were all kinds of decisions to be made and I would talk to all those people too. There were all kinds of things to remember.  I was in charge, not only of the household, but someone’s life.  All the care my husband needed depended on the decisions that I made then and still do now.   However, when I would leave the hospital and go home, it was usually late at night and very quiet.  I would almost be on auto pilot.  But it was the best time in the world.  It still is today.  For an hour or so before I would fall asleep, I would have a moment to catch my breath.  No one to talk to, no one to bathe, feed, get dressed, undressed or deal with.  No decisions to be made.  Just me and peace and quiet.  Shed the clothes, hop into bed and just take a moment to reflect.  Sometimes I’d imagine it was all a dream and someone would pinch me and I would wake up.  Sometimes I would just let my mind go blank and stare off into space.  Other times I would think about how I would ever be able to bring my husband home.  Sometimes I would just cry and get it out of my system.  I hatched many an idea during this period of time.  No one to bother me, no interruptions, just a single moment in time.  Sweet!   And then I would just fall asleep, a deep, dreamless sleep from pure exhaustion.  Lo and behold, the next day would be here and the entire cycle would begin again.

Ring the Bell and Win a Prize!

If you have ever been to a carnival, you've heard it before.  Ring the bell and win a prize.  In my husband’s case, the prize was a golden ticket which would take him home.  Ah, but not so fast.  He had to work and work hard. 

He was making progress with his speech therapist.  But now it was time to advance to work even harder with the physical therapist.  The time had come for the cast to come off his leg.  The doctors came in and sawed that thing off.  Low and behold, his leg looked awful and at the back of his ankle he had a huge decubitus ulcer.  His leg was approximately two inches shorter and they also discovered he had heterotrophic ossifications in his right hip.  (Which is bone growing inside of muscle.)  Not exactly the bell ringing we had anticipated.  Not at all what the doctors had anticipated either.  Physical therapy just took 2 steps backwards.

When someone had been through such a huge trauma as my husband, they always tell you, don’t get upset if he suddenly stops making progress, because that is how it works; 3 steps forward, 2 steps back. Wound specialist had to step in and take care of the ulcer.  (He would actually continue seeing them even after he was discharged from the hospital.  This type of ulcer takes forever to finally heal.  At one point, the doctors were even talking about skin grafting, but we never had to go that route.)  Ring the bell and win a prize had now become a high stake target and if anyone wanted to reach it, it was my husband. 

His foot was fitted with a soft boot that he would continue to wear even months after discharge.  The first target was to try and teach him to transfer.  The therapists would work with him to transfer from the bed to his wheel chair, from his chair to the exercise matt, back to his chair and then back to bed.  This was a winning moment.  Because now, he wanted me to learn how to help transfer him, then he would not have to wait for the nurses to help him when he had to use the bathroom.  His thinking capacity was truly returning.  And so I learned.  We practiced with the physical therapist until I was proficient.  The moment of graduation came when I had to perform for the therapist and nurse.  My name then went on the wall and then into the charts as a capable person to help transfer my husband.  The nurses’ job just got easier and this was the moment that they decided that I was an asset to have around. I had finally won them over! Now when I arrived early in the morning, I could get him up, dressed, out of bed and into his wheel chair.  With my assistance he could wheel into the bathroom, brush his teeth, shave and get ready for the day without waiting for someone to help him.  My husband became a happy man for the first time in months!  We were on the upswing again, 3 steps forward.  Ring the bell and win a prize was looking better and better. The golden ticket was lurking on the horizon!

The Speech Therapist

After about 2 weeks, the rehab unit started to settle in around my husband.  He was now in a private room.  He still did not understand what had happened to him, but he was alert.  His leg was still casted so the amount of physical therapy was limited until it was removed.  He also had restrictions on how far he could be sitting up because of the healing hip and femur. He was breathing better, but required periodic treatments to help keep his airways cleared.  His heart was doing great after the thoracic aorta was repaired.  His ribs were healing.  He still had some problems with blood clots, but that was clearing up.  His arm was not too good.  They discovered that he had a subluxation in his shoulder because of the spasticity, but they put his arm in a sling and taped his shoulder and back. So far so good!  However, his therapist discovered that he was seeing double vision.  So his eyes had to be patched.  He took on the look of a pirate.  So much so, that my brother in law brought in a fake parrot that we attached to his chair.  The unit got a kick out that!  Like I said before, they were learning to enjoy us!  So during this period of time, much of the therapist work was limited, except for the speech therapist.  She really won over my husband.

When my husband worked with her, it was one of the only places I did not tag along to.  Her office was very small and he really needed to focus on her.  He had lots of trouble with aphasia and memory.  Where the psychologist was constantly testing his memory, the speech therapist was working on restoring his own memories.  She worked on helping him remember me, his family, his home and his life.  His memory book was an asset.   He had developed a language all his own at this time.  It was OK because I understood him, although sometimes we had some great difficulties.  She helped him regain his eating abilities.  The food offered at times was so unappetizing, so she would bring him fresh fruit, especially strawberries!  If she gave it to him, it was OK and the nurses on the unit wouldn’t get upset.  However, we did get into a little trouble once.  The speech therapist told us that we could bring him a Wendy’s Frosty.  It was the right consistency and he loved it.  So whoever was passing Wendy’s would bring a Frosty.  However, Nurse Ratchet caught us.  Oh did we receive the third degree.  But the trusty speech therapist came to the rescue!  She just had to put it in the chart and we were good!  His language was really starting to improve.  It was great that she was able to spend so much time with him at this point, because once physical and occupational therapy picked up, her time would be cut down.  So she and my husband developed a wonderful rapport.  He still remembers her fondly.  However, even when he eventually left the hospital and started out-patient rehab, the speech therapist always continued to be his favorite!

The Day the Music Died

All my life I have loved music, all kinds of music, whether it was classical, jazz, blue grass, rock, country or folk.  When I was a young girl, it was ballet.  I loved the music of the ballet.  That changed rapidly with the invasion of the Beatles.  My husband seemed to share this penchant with me.  We moved on up through the 60’s, 70’s, 80’s, with each decade introducing a wide new scope of music.  Of course we saved all our albums, which now are referred to as vinyl.  We lived through 8 tracks, tapes, CD’s and now iPods (although I haven’t quite figured those out yet).

I played the piano.  My husband played the bagpipes and we introduced our children to the wide scope of music out there.  Each one can play a variety of instruments, from the piano, guitar, violin, mandolin, banjo, drums and of course the didgeridoo.  (We actually have one and that is a whole other story.) 

My husband and I were teenagers during the 70’s.  We did the concerts, from Rare Earth, Led Zeppelin, Peter Frampton, Yes (my all-time favorite), Chicago and the list goes on and on. 

The 80’s brought us the music video.  I remember after my children were born and having to get up with them in the middle of the night, I would turn on the TV and the only thing on in the middle of the night was music videos!

The 90’s rolled around and my husband discovered his Irish heritage and learned to play the bagpipes.  He joined a police pipe band and became proficient in this particular craft.  As a matter of fact he became better than that, he became great!  He even started teaching the bagpipes in another smaller band. 

All this seem to die with my husband’s accident.  Within the first days when my husband was fighting for his life, I couldn’t stand to hear music.  When it has played such an integral part in your life for so many years, each song brought back a memory.  At this point in time, I could handle everything that was going on at the hospital, make all the necessary decisions needed, but I could not handle hearing music.  I suddenly found myself developing a taste for talk radio and the news instead. 

It’s been five years now, I still like music.  I can listen to it again, although it’s not the same.  I still play the piano, although my son plays it better!  My children still play all their instruments, but my husband can no longer play the bagpipes.  This is the decade of talk, in more ways than one.  It’s relearning the value of words and communication, written and spoken, repetition and practice.  This has become my husband’s new goal to become proficient in.  Speech, his favorite subject!

Memories…..

Since my husband had come so close to death, I asked him once if he remembers anything from the time he was unconscious.  Near death experience, white lights?  He doesn’t.  So I asked him what was his earliest memory of his stay in the hospital.  He really doesn’t remember much from nearly 3 months in the hospital except perhaps the last 2 weeks of his stay.  But he does recall one time when he woke up not being able to think in a language.  He said that all he knew was what was in front of him.  His mind was thinking in pictures. 

Way back when, while he was still on the respiratory unit, just before he was moved to the rehab unit, he did say Hi Maryann!  At the time I knew that he did not really know who I was.  It was just what the therapist was practicing with him.

One day I was running later than normal in the morning.  I called my brother in law to see if he was going to stop by the hospital right after work.  He was!  So I scrambled out the door and drove to the hospital.  (Although I made sure that I stopped for the coffee!)  As I came down the hall I could hear laughing coming from his room.  As I came in, my brother in law said that my husband had just said the funniest thing.  He asked my brother in law where the cute blond was who always came to his room.  He thought she was hot!  Too bad he’d only known her for 19 days!  We had been married for nearly 28 years at the time.  It became part of our routine.  Everyday someone would ask him how long he’s known me for and by golly he would add 1 day to the number of days that he thought he knew me for.  We still laugh about it now!

Rose-colored glasses

As my husband settled into his new home, so did I.  Only this time there was no waiting room.  I had to come up on the elevator and walk directly by the nursing unit (actually kind of slithered by at first) and go directly to his room.  At first it was down the hall and he shared it with a roommate.  But eventually because of the condition he was in, they moved him to a private room.  To my chagrin, it was directly in front of the nurses’ station.  It was great for him, because they wanted to keep an eye on him, not so great for me because they were less than happy to see me from sunrise to midnight.   But it turned out alright as I proved to be much more useful to them than they expected.

As his schedule was being ironed out by the therapists, he also had a psychologist come to visit with him.  She wanted to run some tests on him to see how much he remembered.  It had finally come to the time that he needed to know that he was in a hospital and why.  She brought in some pictures to help him figure all this out.  As she showed them to him, she would ask him to point to the one that showed where his was and why.  He had no idea.   Our daily routine was born.

Anyone who came into his room had to say his name, their name, the day, date, time and that he was in the hospital because he was in an accident.  I had to bring him a watch and make sure a newspaper or something that showed the day and date was in his room. 

This doctor also would test his memory constantly.  She would bring in a barrage of memory type games.  I would watch in awe and hope that no one would try and test me because I knew I would fail horribly.  She would have him count and add numbers from 0 to 100.  Then she would ask him to start at 100 and subtract 7 and keep going.  He was great with numbers but not with faces.  At this point his long term and short term memory was pretty poor. 

Of course I would always be there.  He was much more comfortable and at ease if I stayed.  I knew not to talk when she was testing my husband and generally sat quietly in the corner.  She wanted him to answer if he could.  If he could not, she would look to me.  If she did not understand him, I would translate.  Occasionally she would ask me how I was doing.  I was somewhat familiar with her as she had visited my husband a few times while he was still on the respiratory unit.  I would always answer that I was fine.  After all this was not about me, it was about my husband. One day she asked me if I always saw everything through rose colored glasses.  Was she being sarcastic, I wasn’t sure.  As of this day, I’m still not sure.  But if she meant that I was cheerful, positive and optimistic, you betcha!   I knew that his final outcome may not end up a good one, but I was not going to bring that attitude with me through his door.  Through this whole ordeal, my husband was always as cooperative as he could be.  He worked very hard to regain some semblance of his life back and I was not going to be the one to burst that bubble.  So if it took rose colored glasses, then so be it.

The Rehab Unit

My husband’s move to the rehab unit was not an easy one.  Now being alert brings an abundance of other difficulties.  For most people you start to become aware of your surroundings.  For my husband, he didn’t have a clue of what or where his surroundings were.  He could now feel all the pain of his injuries, he still was unable to eat much, he had memory loss, aphasia, his right arm did not function and he had spasticity.  Probably the most difficult part for his was trying to figure out where he was and what had happened to him.  Combine all of this with the move to a new unit and new staff and you get a disaster in the making. 

The nursing unit was not at all prepared to get a patient who had a permanent shadow (me).  I wasn’t about to leave him alone.  I felt that a constant familiar face was a good thing to have around someone who was so disoriented.  He was going to have a great struggle putting together the pieces of what had happened to him and I meant to be there to help him and no one was going to dissuade me from doing so.  At first I butted heads with many of the nursing staff, but eventually we became one big happy family.

On his first day on this unit, he began working.  Poor guy was so confused, but the speech therapist’s goal was to get him up into a chair and bring him down to the dining room to try and practice eating.  It did not go well.  Food was about the last thing he wanted to have.  Of course prior to all of this, he had to have a swallow test to see if he could eat food.  He passed!  (My husband was always a good test taker!)  However, to ease the start of trying to digest food, all of it was mush and liquids were thickened.  If I was dragged through the desert and starved for days, I don’t think I could have handled it.  It was so unappetizing!   Think of water with the consistency of a thick paste, yum.  He would look at it, look at me and push it away.  So much for the start of therapy.

Next he moved on to physical therapy.  They had the honor of being referred to as physical terrorists.  This was another part of the day that he was not fond of.  I thought it was the best.  This was going to help him walk again.  They would exercise his legs, try to get him to stand and then show me exercises to do with him when he went back to his room.  He could hardly keep his eyes open during this part nor could he accomplish any of the tasks that were thrown his way.

Occupational therapy came next and they wanted to try to get his arm to move and best of all, reacquaint him with the bathroom.  Such enthusiasm on their part, not much on my husband’s part.  All of this in one day, his first day!  By the time this day was over, he was pooped.  And it was closing in on dinner.  It was time again for the luscious array of mushy food.  He did not make it.  Sleep set in.  He would have to start all over again tomorrow.  His job was going to be to relearn everything that we all take for granted.  My job was to learn how to help him succeed.  And so both our challenges were being stacked up with the odds at this time, not too good.  I suddenly felt like Scarlet O’Hara in Gone With the Wind…Tomorrow is another day! 

Enter Physical, Occupational and Speech Therapy

Now that my husband was awake, it was time to try to get him to move a little bit.  He had spent so much time in SICU, but he still could not be moved to the rehab unit.  We settled into the daily routine of the respiratory unit.  He was still connected to that darn ventilator and still had a feeding tube.  Because his hip was broken and now healing and his leg was still casted, he could not do a whole lot of physical things.  He also remained wildly confused and agitated.  It still took all of us to watch him so he would not pull out any of his tubes or picc lines, although, he was slick!  (Once as my daughter and I talked, me on one side of the bed and my daughter on the other, he watched us intently.  As my daughter looked away for a second, he pulled out his vent tube.  My daughter, without missing a beat, scolded her dad and plugged that thing right back in!)  He also pulled out his picc line twice.  I still to this day cannot figure that one out, but it didn’t seem to astound his trauma doctors much. 

Enter the therapists.  They would visit with my husband and move his arms around and move his legs around.  The speech therapist could not work much with him at this time because of the vent, the other therapist tried their best.  One group decided that it was time to at least sit him up in a cardiac chair.  That was a trick!  I’m not sure that it was entirely a good idea looking back now.  It was only for a short period of time, but the look on my husband’s face was interesting to say the least.  I don’t think he understood what was happening.  They came in and bustled about, trying to decide how to move him.  I stepped out of the room to give them the space to accomplish this.  When I returned, there was my husband sitting up.  He actually looked good!  It had been better than 6 weeks since I saw him in an upright position.  However, he was not happy.  He started wiggling around and I thought, he was trying to stand up.  Then he got a wild look in his eyes and kept staring at the bed remote and inching towards it as if he wanted to grab it.  For one fleeting moment, I thought, he’s going to hit me with that thing or fall out of this chair trying to do so.  I yelled for one of the nurses to call for the physical therapists to come back and move him back to his bed, which they did.  This was one of the first times I ever recall being nervous in the same room with him.  This episode seemed to pass.  No one at this point told me that this was not unusual.  I would later find out that periods of agitation are normal.  Some experience it worse than others. 

The therapists never moved him to a chair again on this unit.  They did continue every day working with him, just moving his limbs around and assured me when he moved to the rehab unit, the therapy would become more intense.  As they weaned him from the ventilator, the speech therapist came more often.  One day they decided to see how he would do without the vent at all.  They pulled the tube and capped the port.  He seemed to do well.  The next day it was removed entirely. 

Now they would see how well he could swallow and if he could make any noises.  His speech therapist was very diligent.  But he just would not say anything to her.  Unbeknownst to me, when his physical therapist would come in to work with him in the morning, she was also practicing with him.  Everyone wanted to get my husband to do something.  It was a miracle that he survived all he did up to this point and they were very anxious to get him to come around.

He was now getting strong enough to once again be moved.  The thought of a new unit again for me was worrisome; I could only imagine what it was like for my husband.  Although I don’t think he had any thought about it at this point. The morning before his move his physical therapist was in his room working with him.  As I still came very early every morning, I walked towards his room and saw her there.  I decided not to go into the room, because if I was there, he paid more attention to me, instead of her.  So I lingered out in the waiting room until I knew she was almost done.  As I approached his room to say good bye to her, she said, where have you been? We have been waiting for you.  I explained where I was and she looked at my husband and told him to go ahead.  He looked at me and said, Hi Maryann!  I burst into tears as well as the therapist.  This was the first time in months I had heard my husband’s voice!

He was moved to the rehab unit later that day.  I will always remember that pinnacle moment.  However, I was also almost 100% sure that he had no clue who I was.

I Am an Advocate!

One of the most important things I have learned from this whole experience is that if you have a loved one in the hospital, than can no longer speak up for himself,  you must become an advocate for that person.  You must become their eyes, ears, mouth and brain.

I became one very early on during my husband’s long stay in the hospital.  As time went on, I started to learn many things relative to my husband’s various conditions.  I was like a little sponge, absorbing every little piece of information that I could contain.  The more knowledge I got the swarthier opponent I became. 

I learned that when my husband first arrived in the ER, they use a scale for brain injuries to determine the level of consciousness.  It is called the Glasgow Coma Scale.

The Glasgow Coma Scale is based on a 15 point scale for estimating and categorizing the outcomes of brain injury on the basis of overall social capability or dependence on others.  The test measures the motor response, verbal response and eye opening response with these values: motor response, verbal response and eye opening.   My husband arrived in the ER with a 3 on this scale.  No motor response, no verbal response and no eye opening.  The prognosis for this level is not a good one.  One doctor pointed out to us that a 3 was as close to death as you could get.  I remember thinking; thank god no one said this to me when my husband first arrived in the ER! 

I also learned that there are different levels of coma.  My husband had suffered a severe brain injury.  So he started out on the bottom of this scale too.  It would take a very long time to work his way up this one. 

I had to stand up for my husband as if I were him.  There is no one is this world that knows him better than me and I swore to him that I would take care of him no matter what.  I remember promising to …love, comfort, honor and keep him for better or worse, for richer or poorer, in sickness and in health, till death do us part!  Well, death had not caught up to us yet.  I found my voice.  I became an advocate and I remain one today.

Cubs vs. Sox

We are from Chicago.  Northsiders to be exact!  I grew up with a father who was a passionate Cubs fan.  He lived and breathed the Cubs.  Then I met my husband, who to my father’s utter chagrin was a White Sox fan.  (They truly liked each other; they just didn’t understand the other’s choice of baseball teams!)  My husband turned me and then handed down his love of the White Sox to his children.  We were one big happy White Sox family!  When they won the World Series in 2005, there was none more over the moon than my husband.  Sadly, my father never lived long enough to have my husband be able to gloat about this wondrous event to him.

But that was OK because my husband’s brother was a Cubs fan and this adversary was good enough!  Again, we were Northsiders and more than three quarters of the baseball fans in our area are Cubs fans.  So there were enough of them to be able to rub it in their noses that the White Sox won the World Series.

However, hell hath no fury like a Cubs’ fan scorned!  Ah, it was payback.  When so many people are under so much distress and you are in one confined area for so long a period of time, you start to get a little silly.  Even with the most seriousness of the situation, there comes a time when silliness wins over seriousness.  And my husband’s brothers have a bit of prankster in them; as did my husband; as did half the people in that waiting room.   They decided that if my husband was unconscious now there was a good chance that he would never remember that he was a White Sox fan when he regained consciousness.  So they all hatched a plan to turn him into a Cubs fan.  So being coaxed on by the Cubs’ fans, they decided to sneak into the SCIU room where my husband was, with a Cubs’ jersey and hat and dress my husband in it and take a picture.   Figuring when he came to they would show him the picture and remind him of how he was a Cubs’ fan. 

So the day came.  They had their equipment and put their plan into action.  Hell, even the SCIU nurse that day had on Cubs’ scrubs.  They got him dressed and took the picture.

Sad to say though, when my husband eventually regained consciousness, he happily remained a White Sox fan!  It was the one thing that he could remember very well!

You Look Like Groucho Marx

I have had a few surgeries in my life.  The very first one was the birth of my oldest son.  He was big, laying transverse and wasn’t budging.  So it was decided that I should have a c-section.  That was fine with me, no labor!  But this was before the days of epidurals. My choice was either a general or spinal.  I nixed the spinal and went with the general.  No big deal.  You are out for a bit and then they wake you and your baby is here.  With the birth of our first child, my husband was in seventh heaven.  I actually felt pretty good afterwards, but was not able to get out of bed that day.  We had lots of visitors.  The next day the nurses came in and they want you to move, get out of bed and walk a few steps.  OK, so I did it all.  Several more visitors…great!  The next day they want you to move further, try going to the bathroom, perhaps take a shower.  OK, up I went to the bathroom, good so far, until I looked at myself in the mirror.  I had tape marks across my face apparently from the surgery.  I could not believe that my family had let me go 2 days with tape marks plastered on my face.  It probably made no difference to anyone else as everyone was here to see the baby.  But I was appalled.

When I first met my husband he was clean shaven.  One day he got the notion that he was going to grow a mustache.  He always kept it pretty neat.  During the early part of my husband’s stay in SCIU, he still looked very much unlike himself.  Amongst other things, he had to wear a cervical collar as the doctors were unsure if he had any spinal injuries.  This kept his head pushed back and of course he was unconscious and laying on his back.  He was starting to look a bit scruffy.  The nurses at first did shave his face, but my daughter absolutely refused to allow anyone to touch his mustache.  That is how she always remembers her father.  So we let the mustache be.  After a while though, with him laying there on his back with part of his head shaved and the rest of his hair pushed up and this overgrown mustache, all I could think of when I looked at him was, my god, you look like Groucho Marx!

 I appealed to my brother in law, who brought it clippers.  Between both my brothers in law and my father in law and with the help of the nurses on the unit, we managed to make his hair (and mustache) a bit more manageable.  You see, it brought back the memories of the tape on my face way back when.  All I could think of was if he knew we let him look like Groucho Marx, whenever he woke up he would be very angry with us all.  Thankfully, my family kept up his appearance and once he was moved from SCIU to the respiratory unit, we convinced the doctors to remove the cervical collar, which then allowed us to just shave his head and clean him up entirely.  But that darn mustache stayed!  However, Groucho was gone.

Ahhhhhh….Coffee

I love coffee.  Not sure if this is politically correct these days.  But I do love coffee!  I said before that I don’t know how I survived on so little sleep.  Welcome coffee!  Prior to my husband’s accident, we were turning into health nuts.  We had that Bahamas trip coming up!  We would get out there and run every morning.  We were watching what we ate (so we would look great on the beach, ha ha)!  And we had decided that we would let go of the caffeine.  My husband wasn’t much of a coffee drinker, but I was.  So, little by little if I had to have it, I was weaning myself to caffeine free.  Prior to us leaving for the Bahamas, I was off the stuff! 

That all went to hell the day of the crash. 

During my occupancy in the waiting room of the SICU, there was a coffee pot.  Usually the volunteer for the day would make a pot of coffee.  By the time my husband was getting ready to be moved from there, I was making that pot of coffee three times a day! 

It became different when he was moved to the next unit.  They did have coffee, but it was restricted to the nurses area, although, they did let me fill up my cup.  Of course there was the cafeteria.  The staff up there knew me pretty well by this time.  I would stop in every morning to grab my cup along with my fruit.  I even started to become a coffee connoisseur! They had different flavors and mixes that you could add to your coffee to give it that great taste appeal.   But after a while, their cups weren’t large enough.  Aha…a solution!  I would stop at Dunkin’ Donuts on my way to the hospital and get their largest cup!  That seemed to suffice the coffee craving for awhile!

The Routine

Day turns into night, night turns into day and so goes the routine.  I cannot imagine today how I survived on so little sleep back then.  I would always arrive at the hospital between 6:00 and 7:00 am (never any later).  I’d stay until midnight, go home and return again in the morning.  When you have someone recovering from a TBI, with memory loss, you want to make sure that your schedule is consistent.  Before he moved from SICU, I wanted to be there to make sure he survived to the next day.  Once he was stable and moved to the respiratory unit, I wanted to make sure that he was comfortable and that he was getting the proper care.  I also wanted to make sure that he would remember me.  Everyone said he did.  I knew that he didn’t.  He always seemed to watch every move I made, but his eyes just had such a blank look in them.  

This period of time was not a good one.  Thankfully visitors were limited.  My husband’s brain was going through the reboot stage.  He was in an excessive amount of pain from all the broken bones healing.  So he remained on massive amounts of painkillers and sedatives.  He still could not breathe on his own and he did not like all the tubes attached to him at all.  It was a daily struggle to keep his hand away from pulling at them.  And yes I said hand, as in one.  The doctors discovered that along with the initial brain injury, he also had several bleeds in his head from the impact.  One of those bleeds ruptured and caused a stroke-like syndrome consistent with the level of TBI my husband had.  His right arm was not able to move and they just weren’t sure about the rest of him.  So we all just settled into the new routine on this new unit waiting to see what each new day would bring. 

The Longest Day .... Tragedy to Reality

I hate hospitals.  I really don't have a problem with them in general.  But when you live in a hospital waiting room for as long as I did, you are first oblivious of them; then comfortable with them; then familiar with them; then very familiar (like second home familiar), then you just move on to plain hate them.  A variety of people come and go from them.  Where we resided, you would usually see people for a short time.  Our family was there far longer.  We had many, many visitors.  Because we were there for so long, the generosity of our visitors was overwhelming.  They brought pop, food, blankets, reading material, puzzles, games, cards, etc.  They were things to help while away the day. 

And it was the longest day.  Through the night it was the original surgery to repair the brain and depressed skull fracture, then through the day it was repair the thoracic aorta, broken pelvis and femoral head fracture, tibia fracture, smashed and fractured knee and ankle and assorted broken ribs. A tracheostomy was performed; a gastric feeding tube and IVC filter was also inserted.  Actually it was over several days that all these surgeries took place.  But for me it blurred into one very long day.  We were in that waiting room day and night.  We moved from chair to couch, sometimes changing sections of the room.  We even rearranged furniture.  We ate, talked, slept and wept and even got silly at times.  We all gathered and endured; my kids, family, extended family and friends.  We all did what we needed to do to pass the time and keep our sanity.

Several weeks passed and my husband was still in a coma.  He was repaired (just short of being the bionic man) but he just couldn't wake up.  He truly suffered and we all tried to bear the brunt of it for him, although we could not.  My family and I waited for the pressure in his brain to go down, he spiked a fever, he had several blood clots, pneumonia and was a mess.  But for those of you who like spoilers, I’ll cut to the chase, he survived!  He still had not regained consciousness, but he was alive.  One morning the rehab unit’s doctor appeared.  He felt that there was hope for him to eventually be moved to the rehabilitation unit, but first he needed some additional time to heal and be able to breathe on his own.  So they would move him to another unit in the hospital to give him this time and once this was accomplished, we would then help him regain his life. 

You see, it is not like in the movies.  Welcome to reality!  People just don’t suffer a horrendous accident and then poof, instantly wake up and off they go, back home to the suburbs.  It is a long, long process.  You fix all the body parts and then you have to make them work again.  But you don’t know if they will work again until the main frame reboots.  And you don’t know if that is happening until the person wakes up.  It’s a viscous circle.  We all did our best to try to wake him and one day it happened, sort of.  I always describe it as “eyes open but nobody home.”  Good enough for the doctors though, so they moved him out of SICU to the respiratory unit, where he endured a new form of recuperation.  We all got to experience a new waiting room. 

It was all very different on this unit.  Visitors were very limited.  A person who has suffered a traumatic brain injury like my husband could not tolerate over stimulation.  I always was there from early morning until late at night.  I encouraged my kids to try to get back to their lives, school and a sense of normalcy.  I do not know how they did it, but they are extraordinary kids. Perhaps someday they might want to share their stories.

But now that everyone was gone, a realization of how alone I was set in.  The support group that surrounded me previously had dwindled.  It was now just immediate family and even they had to resume their normal lives.  Here in this hospital remained this poor man who had no clue where he was, why he was there, he couldn’t talk, walk or function and by golly I was not going to let him down.  I had taken a leave from work to remain as near him as possible.  But I still needed to take care of our household.  I just had to do it alone.  This is when I discovered the usefulness of the computer.  From this moment on, I learned to depend on it for just about everything, (short of making dinner).  Hospitals did not have WiFi at this time which did not matter because I did not own a laptop.  But I searched down every available computer in that hospital, from the pediatric unit to the doctor’s lounge.  If my husband slept, I slipped off with my briefcase in tow to take care of paying bills.  The cafeteria staff was so used to seeing me by this time that I suddenly started receiving an employee discount.  I settled into this new routine and surprisingly discovered that I was becoming a much different person. I was making every necessary decision alone.  I had to and I had to think about what was going to happen next once my husband was able to be moved to the rehab unit.  The once aforementioned “we” would never be again and that it was just going to have to be “me”.