How I am learning to "Do Better. Be Better." after the cavernoma malformation in the pons of my brainstem bled.

Thursday, March 2, 2017

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.         





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