One Year Anniversary: The Flight Home and In-Patient Therapy

I had been nausea free for two days and was given the okay to go home.  Since I was doing great we decided to fly.  To be honest, a two hour flight with a one hour drive home sounded much better than a two day drive.  If I got sick on the plane, so be it.  I wanted to be HOME.

Patrick had admitted that he would be most comfortable if I went to inpatient therapy after my final therapy session.  I didn’t want to, but obliged without hesitation since I had put him through enough already.  He deserved that much.  So Patrick scheduled our flight, coordinated our pick up with Angie at the airport, and contacted Covenant Rehabilitation Center to get me admitted.

Our flight was Tuesday, March 15 at 6 a.m.  We woke up at 3 a.m. so we could get ready, I could get my medications, get discharged, and have time to drive to the hospital.  The morning went insanely smooth because Barrow is such an amazing institution.  Before we knew it we were downstairs waiting in the lobby right next to the Starbuck’s we went to everyday.  We waited for a very long time because of course, our cab driver was late.  While we waited Virginia came to greet us.  It was 4 am in the morning, long before her shift, and she had come in just to see us off.  Like I said, Barrow is an amazing place.  

We finally arrived at the Mesa Airport after our cab driver got lost.  The Mesa Airport was perfect for us to fly out of.  Due to its small size, check-in and security went very fast and smooth, especially since I was in a wheelchair.  By this time the early morning was starting to take its toll on me.  The car ride made me a bit motion sick and this was the first time that I was really around a lot of people and in the mix of the hustle and bustle of life.

We were able to get a bit of food and relax before it was time to board.  When it was time to board, an airport employee attended to me, which despite what you would think, made me very uncomfortable.  I hated that I needed help.  I hated the stares and curious looks I was getting.  I simply hated the feeling of being uncomfortable in my own skin.  We walked outside to board the plane and dread instantly consumed me.  I looked up to see a huge multi-level ramp structure leading to the airplane.  How the heck was I going to get up there?  

The airport attendee was a pro and was able to wheel me up the ramp without even breaking a sweat.  Once I got on to the plane though, the feeling of dread returned.  I could feel the heat blast me as soon as I stood up in the cabin.  With my inability to control my temperature, that was not a welcome feeling.  I struggled to walk through the row to our seats and could literally feel the stares of people burning a hole in my chest.  Plus Patrick, bless his heart, was doing his best to help me navigate.  I needed the help, but it only drew more attention to me.  I had never been more relieved to sit down in my life.

But that was short lived.  I am not sure how to describe the flight other than to compare it to what I think hell would be like.  I could instantly feel the extra pressure on my head and was so unbelievably hot that I thought I was going to hyperventilate.  I had no room to move, so I was beginning to get very stiff and my left side extremities were tingling like mad.  

After an hour and twenty minutes, I couldn’t take it anymore.  The last thing I wanted to do was get up and draw more attention to myself, but I needed a break from trying to hold it together.  Patrick helped me get to the bathroom, but I was left on my own once inside.  It was a nightmare.  I have no idea how I even maneuvered myself into the position to go to the bathroom in that tiny space in the condition I was in at that point.  I am surprised I didn’t pass out.

When I came back out, Patrick had been sitting in the front row (there was no first class seating or flight attendant station).  I took his seat and he began to buckle me in so that I would have more leg room and air.  Relief rushed over me.  I had so much more room and it was about 20 degrees cooler in the front.  Before he could finish buckling me in a flight attendant told us that we couldn’t sit there because it was emergency seating.  Her comment didn’t sit well with Patrick as he very authoritatively informed her that I had just had brain surgery and needed the seat.  A part of me was cheering him on, but the other part of me was mortified.  That latter part won.  I told him it was okay and to take me back to my seat--”I can do this.  I have made it through worse.”

The remainder of the flight went much smoother.  That break, although short, was what my body needed to cool down and calm down.  Before I knew it, we had landed back in cool Iowa.  The gush of cold air as we exited the plane was like heaven.  We found Angie, grabbed our bags, made a stop at McDonalds and headed north to OUR HOME.  We wanted to drop off our belongings to get fresh ones and check on the progress of our basement to cheer us up before heading back to inpatient rehab.

There is a long backstory to this, but while we were gone we had a team of amazing friends led by Jim Moody, finishing our basement to ready it for a nanny to help me over the summer.  We were blown away when we walked downstairs.  Jim had been an angel on Earth to us since I got sick and to see what he had all arranged to be done made our hearts swell with love.  It’s not that I don’t have words to explain my gratitude towards him and everyone who helped, it’s that there are not enough words to do how I feel justice.

After we got everything organized, we hopped back in the car to head to Covenant. I loved Covenant during my first stay, but I was not excited to go back.  This time around would undoubtedly be different.  I knew what to dread (the nine hole peg test and vision tests) and I understood how physically challenging and exhausting it was going to be.  I knew I was capable, but I didn’t have the desire or motivation to do any of it.  

I had been so naive the first time I got sick.  I was beyond messed up and still thought I would be able to go back to work within two weeks.  I had no idea how long it would take me to recover or what would possibly remain permanent.  This time I knew exactly what to expect.  I remembered the therapy schedule, the meals, and the status report meetings.  I also had a very good idea of how long it was going to take me to recover and what would most likely remain permanent.       

My stay this time would also be different because Patrick wouldn’t be with me.  I was well enough to stay on my own throughout the night and he needed to get back to attend to the kids.  I was NOT looking forward to being alone. Patrick did decide to take the rest of that week off so he could be with me a little bit during the day.  He ended up bringing a different daughter to do therapy with me each day, so the days went very fast.  By the end of the day I was so exhausted from therapy that all I did was sleep, so I luckily never felt lonely.

The first night at Covenant my entire family and Angie visited me.  I was so excited to see them but it was my first time that I noticed how my “new” body was going to shut down when I was tired.  It had been a VERY long day both physically and emotionally and I was cashed.  My left side was non-stop tingly and heavy.  My vision…..oh boy…..my vision.  I could literally feel that neither of my eyes were no longer tracking from side to side.  I could feel both of them saccade (bounce) once they hit their limit.  With both of my strokes, I only knew that my eyes weren’t tracking because people would tell me they weren’t.  With the exception of the first week after my first stroke, this was the first time that I could actually feel it happening.

I also started to develop two new symptoms while I was at Covenant.  I would notice a rattling noise in my head when I walked every now and again.  I tried to brush it off, but eventually I was so panicked about it that I called Spetzler’s office.  They informed me that it was my scar tissue beginning to form around my wound and to give it a month to settle and heal.  Luckily, it stopped about a week after my call.

The other new symptom was tooth sensitivity.  My sister-in-law, Ashley, had brought me a Heath snowstorm from Four Queens when she came to visit the first night.  They are my absolute favorite and I was able to enjoy the taste of it despite the change in my sense of taste.  But every time I would take a bite I would about go through the roof!  It took me three days to eat it….I wasn’t going to let it go to waste!  My sensitivity didn’t discriminate.  I was also sensitive to hot.  Anything warmer than room temperature was torture to try and eat.  Needless to say, all these changes in my senses really limited how much food I was able to eat.   

Other than that, therapy was going very well.  I was not only noticing improvement daily, but throughout the day as well.  My therapists had worked with me previously and had watched my recovery thus far from Patrick’s Facebook posts so they were ready for me with a very detailed and goal orientated plan.  They knew how to push me and boy did they ever!  Both my PT and OT sessions were jam packed and intense.  I was healthier this time around and my therapists took full advantage of that.  Bottom line…..I owe a major part of my recovery to the team at Covenant Rehabilitation Center.  Please consider them if you ever need inpatient or outpatient therapy.  The ENTIRE staff is INCREDIBLE.   

During my stay I also had pretty intense bouts of survivor’s guilt.  I was surrounded with many people that had been there for a long time and had a serious recovery in front of them.  I, on the other hand, had two strokes and risky brain surgery and was awesome by comparison.  I could not stop myself from looking around and wondering, “Why aren’t I worse?  Why do I deserve this miracle?”

My survivor’s guilt coupled with my Arizona therapist saying I didn’t need inpatient therapy, made me very anxious to get home.  I was HOME SICK.  My improvement in the short amount of time I was there had shown me that I would be okay at home and outpatient therapy would be sufficient in aiding my recovery.  I had checked in on Tuesday and by Wednesday night I had sent a message to my OT begging for her to put in a plug for me to go home on Friday.  I could not stand the thought of being there over the weekend.  

She pulled through for me and I was told on Thursday afternoon that I would be checking out on Friday.  My therapy team even reworked my schedule so that I would be done by 11:30 on Friday morning so I could go out to lunch with Patrick and Seeri before heading HOME.  Seriously, the staff at Covenant Rehabilitation is second to none.  

Leaving Covenant that afternoon felt like the ending to a chapter….a VERY LONG one.  I still had quite a bit of recovery ahead of me, but I had overcome the biggest hurdle.  Surgery and inpatient recovery were checked off the list within 15 days.  Are you kidding me?!?!?!  

Now it was time to go home and see if my new body could keep up with my very crazy and busy life.         

One Year Anniversary: The Next Eight Days

The details of the next eight days kind of all run together.  It was like we were living our own groundhog day.  We’d wake up, shower, take walks, go to the healing garden, eat lunch, take walks, go to the healing garden, eat supper, take walks, watch Netflix, call the girls, and go to sleep.  Sprinkle in some puking, OT and PT therapy sessions, lots of nurses and doctors visits, and medication administration and that was pretty much our days.

I woke up with impairments, but nothing like what I was expecting.  I never did get a headache, which shocked me.  My neck, though, WOW.  It was so stiff and sore. It ached much like your muscles do when you have been sick for a long time. I also had very limited range of motion, especially looking to my left side.  After sleeping for many hours, I would wake up and barely be able to move my head from side to side at all.  I was given lidocaine patches to wear to offer relief to the area.  I was supposed to have them put on at 9 am, but I quickly realized that I needed more relief throughout the night so I could sleep.  Instead, they were applied at 9 pm and I focused on stretching and staying active throughout the day to keep my neck loose.  My neck didn’t feel great, but it was no different than being sore after a really tough workout.  I was elated to have a stiff neck be my biggest ailment.      

My double vision was also back.  I never had a doubt that it wouldn’t be though.  Double vision was my most significant and permanent deficit from both of my strokes, so I knew it would be greatly affected by surgery.  Plus, my CM sat right on my sixth nerve which controls everything vision so it was only common sense to assume that poking around in there wouldn’t help my case.  My double vision was much like it was after my first stroke.  Whichever eye was covered would be the eye that would deviate in towards my nose.  The inability of my eye to track from left to right was also the same as it was after my first stroke.  Same ole deficits, different day.  

My balance was off, but it was only a little worse than what I went into surgery with.  Compared to my first stroke, this was a walk in the park to deal with.  I was able to walk with a walker right away.  I HATE walking with a walker.  It slows me down too much and makes my gait feel awkward.  It was my personal goal to be rid of the walker by the time I left Arizona.  Every chance I had, as long as I wasn’t too physically fatigued already, I would lose the walker and try to do balance activities or walk without it.  Within six days of having surgery, I freed myself of the walker.  My balance still wasn’t the best and I wasn’t going to go climb a mountain, but I had met my goal and I had done it much faster than I could have ever dreamed.

Many normal neuro functions were impacted as well for obvious reasons.  It was a struggle for me to sense my proximity to an object.  For example, it was difficult for me to determine how close I was standing next to a wall unless I was looking directly at it.  I would often reach to hold on to the walls chair rail as I practiced balance exercises only to miss.  Impaired depth perception heightened my lack of proximity sensation.  I always had one lens of my glasses covered with medical tape.  I would switch the blocked lens daily to make sure that both eyes had the opportunity to be the dominant eye.  But, that also meant that I was really only seeing out of one eye.  Add to that my eyes inability to move laterally and my necks diminished range of motion and I really didn’t see much of anything.  

All of these deficits combined together to make movement in general space very challenging.  I looked only straight ahead as I walked because I had limited range of motion in my neck.  If I wanted to turn and look at something, I needed to stop and turn my entire body in that direction.  Since my depth perception and spatial proximity were off, I had a difficult time determining how far or close to things I was, how much space I had to move in between objects, and how far I needed to step over or onto items.  All of this plus my balance issues and it was like I had been spun around in circles 50 times and then set free to give it a go.

Surprisingly, my fine motor function and grip strength was only slightly affected.  These were deficits that I thought I would for sure deal with on a large scale again.  I figured I would have to teach my left hand how to move again and possibly my right since it started to go after my second stroke.  Although my left hand was slow, it still worked.  My right hand wasn’t affected at all.  The amount of stiffness that I felt in my left hand and left foot was slightly higher, but nothing too much more crazy than what had become my new normal.

My face escaped surgery unscathed. I did not have facial tingling, numbness, or drooping.  I was shocked.  All of these were symptoms during both of my strokes.  In fact, they signified that something was really wrong the first time and that I was for sure having a stroke again the second time.  

What did I have?  Nausea.  Nausea.  And more nausea.  Some days I would puke numerous times a day.  Some days I would puke once.  Every time I threw up though, it meant another day at the hospital.  They would not let me go home until it had stopped.  This frustrated me to no end because if it wouldn’t have been for my nausea I would have been home much sooner.  I remember thinking at one point that I was never going to be able to go home.  

The doctors tried many medications while I was there.  One day I was given a steroid of some sort.  I didn’t puke all day, but I also didn’t sleep.  It was like I had take an entire bottle of amino energy--I was bouncing off of the walls. I felt great, but wow, the next day the ‘sugar high’ crashed and fatigue hit me like a ton of bricks.  Benadryl, believe it or not, was the medication that stopped my nausea.  I forget the science behind that medication choice, but let’s just say that Virginia, Dr. Spetzler’s right hand woman, is a genius.   

It’s not that I felt sick like how you do when you have the flu.  I would be completely fine and all of a sudden I would get nauseous, throw up, and then feel great again.  Other than wanting to be home so badly, being nauseous didn’t bother me.  I guess I could say that I had grown accustomed to it after dealing with the same sensation after both of my strokes.    My doctors told me that the trauma and the blood from my surgery had affected my nausea control center in my brain.  This wouldn’t be permanent, but until my brain healed a bit, this was going to be my new normal.        

The part I dreaded most about my day was the shot that I received in my stomach to prevent blood clotting right before bed.  I remember getting them after my first stroke as well.  I could not have them in my stomach then since I was pregnant so I would always choose to have them in my left thigh so I wouldn’t feel it as much.  I didn’t have a choice this time!  And since my stomach wasn’t desensitized at all, I could feel every second of it!  The needle on impact resembled the feel of a flu shot and the medicine that was injected instantly into my stomach felt like hot acid.  The pain would last for 22 seconds (yes, I counted each time).  The shots left my stomach to the immediate left and right of my belly button riddled with bruises.

I was constantly hungry (no surprise here for those who know me well).  But, EVERYTHING tasted awful. I realized very quickly that the surgery had affected my taste and smell.  Even my most favorite things to eat tasted awful…..and smelled even worse.  I basically lived on Rice Krispies, Lucky Charms, and Popsicles for twelve days.  My floor couldn’t keep our kitchen stocked, I went through the food so quickly.  

I could not control my body temperature either.  I was sweating to death and swore I had a fever or convinced hypothermia was setting in.  We would go out to the healing garden in the 75 degree beautiful weather and I would wear a sweatshirt, pants, and blanket and still be freezing.  

And then there was my incision.  They had only shaved a one inch wide by three inch long piece of my hair which I was elated about.  The incision spanned about 5” long and went much farther down my neck than I had anticipated.  There was a spot right below my hairline that they were worried wasn’t healing well and were putting ointment on.  After a few days Virginia suggested we stop putting ointment on it and it began to heal!  I can still feel that spot when I touch it now though.  It is not as smooth as the rest of my scar.  It was definitely intense to see my incision and rub my fingers across it.  It was quite the graphic visual reminder that I actually really did have this risky surgery, even though I felt wonderful.

The lack of physical impairments left me on cloud nine mentally and emotionally.  I could not believe that I was as healthy as I was (I still can’t a year later).  Honestly, I think all my nurses, doctors, and therapists were tickled pink as well.  My doctors would come for their morning rounds, compliment me on how much better I looked each day, evaluate my incision, and leave minutes later after adjusting my nausea medication as it was just trial and error at this point.  My nurses would come in to give me my medications and joke about how easy of a patient I was to take care of.  And my therapists were astounded by how quickly I was progressing from day to day. I thrived on ALL of that.  I loved being the easy patient.  I loved being able to show them all my improvements each day.  Their bewilderment gave me so much hope for how bright my future could be and it motivated me to push harder.    

And go, go, go I did.  We were always walking ‘the loop’ of our floor.  Many of the nurses were outside their patients rooms working on charts each time we stepped out.  They would always give me a,. “Looking good today!”  “Look at you go!”  “Do you ever rest?” as I walked by.  It was also evident that Patrick had made friends with all of them as they would call him by name.

When we weren’t walking the loop, we were at the healing garden.  We would go there to bask in the sun and people watch. :)  There was quite a few nights that we would sit on the bench until sunset.  It was the perfect place for us to spend our time and for me to practice walking.  The paths were curved and some were brick paved so it was like my own little obstacle course.

I also had one physical therapy and one occupational therapy session each day.  OT was usually in the morning and PT in the afternoon.  My physical therapy sessions included a lot of balancing exercises, stepping over and around items, and working on walking form.  This was all identical to what my therapy sessions were after my first stroke which was why Patrick and I were able to set up our own exercises over the weekend.  My occupational therapy sessions were all focused on my eyesight.  I practiced following objects in all different directions and testing the limit of my lateral eye movement.  Once again, this was all too familiar.

Most of all, I was enjoying the one on one time with Patrick.  We hadn’t spent that much time together in a LONG time.  It was re energizing to spend this time only focused on getting healthy and enjoying each others company.  I am so glad that he was able to get out and visit some of our friends and enjoy Phoenix a bit too.

I also experienced my first bout of survivor's guilt during these eight days.  I was usually the only patient at the  Healing Garden.  I was definitely the only person out on our floor.  Every time we would walk the loop I would try to peek out of the corner of my eye into the rooms we walked past.  I would often hear soft grumbles escape as I walked by and could always tell which patients needed the most care by the amount of nurses outside the door.  It was during these moments that I would wonder why I was spared--why I was okay--why I beat all the odds that were stacked against me?  I was not ready to handle thoughts like these.  I selfishly only wanted to celebrate my good fortune.  So I would say a prayer of gratitude in these moments and tuck those thoughts far, far away.

Every single second was of those eight days was worth it the day Dr. Spetzler came to check in with me.  We were told the day before that he would be stopping the next day to give me the all clear now that my nausea was controlled.  When we woke up the next morning we were informed to “stay close” to our room because they were unsure when Dr. Spetzler would be by.  Needless to say, it was a LONG day.  The only thing we did all day was sit in the room, watch Netflix, go to the Chapel on our floor, and walk the loop.  We would check in with our nurses like they were our parents.  We didn’t see the sun all day for fear that we would miss him.

FINALLY, at 5:30 p.m. Dr. Spetzler arrived with his entourage.  They were all dressed in full scrubs like they were in between or just finishing surgeries again.  I could tell instantly that it was going to be a quick visit by their demeanor.  I filled them in on how I was feeling and he commented on how remarkable my recovery was.  I closed the conversation by thanking him for giving me a miracle.  His response:

“You were a miracle before I even met you.”

I had only spoken to Dr. Spetzler for a whole five minutes during my time in Arizona yet he had managed to say two things to me during that I will cherish forever.

There was no doubt that surgery had affected me.  But I honestly could have cared less.  I was living a miracle.  A miracle I had hoped for but am not actually sure I believed would happen.  I knew that all of my deficits would either improve or disappear.  I was so incredibly grateful to be in the position I was in.  Plus, my therapists told me before we left that they didn’t feel I would need inpatient therapy since I had improved so quickly in a short amount of time.  That was unbelievable to me.  I thought I would be here for months and they were telling me I could go straight home.  What planet was I living on?  

I WAS BLISSFULLY HAPPY.