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.         





Wednesday, March 1, 2017

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.

Tuesday, February 28, 2017

One Year Anniversary: The First Four Days

I do not have much to write about immediate recovery.  I remember a total of five things from the four days following my surgery.  I have no recollection of when all the memories actually occurred or how long they each lasted.  It was like I was in a time warp when I was awake.  I probably should describe awake more like drifting in and out of consciousness.  

The first thing I remember is throwing up….A LOT.  I am pretty sure that I woke up from a dead sleep and just let it rip.  But even though I was puking, I remember sensing that I felt great.  I was very foggy but I was aware enough to know that I didn’t have a headache and I obviously wasn’t intubated.

The next thing I remember is Patrick.  Before I went into surgery he had asked me how he would best know that I was okay.  My answer was less than helpful as I said that it would be entirely dependent on what I was capable of saying or doing.  I have never told him this, but I had decided to surprise him by showing him our ‘I love you’ sign that we always share with each other and our girls.

I vaguely remember feeling something brush my right hand.  I struggled to open my eyes but when I did I immediately recognized Patrick’s silhouette.  It was very dark and he looked more like a shadow.  I raised my right hand and signed ‘I love you.’  I could see my hand infront of me and I remember feeling happy that it had listened to my brain's command.  

I heard Patrick gasp and say “I love you too” as he leaned down towards me.  I do not remember if he hugged or kissed me or said anything after that.  All I recall is feeling grateful that I was able to show him that I was still me.  In that moment I knew that God had listened to me and my army and that I was going to have the chance to live the life I dreamed of.  

After that, I remember my parents, Nathan, and Angie.  My parents were together and Nathan and Angie were together.  I remember them all announcing that they were there, but nothing else.  I am not even sure if I opened my eyes to see them.  

I also remember needing to go to the bathroom and telling myself to go because I for sure had a catheter. Except, my next memory is calling for Patrick to go to the bathroom and having Angie answer my call instead.  The nurses came in and tried to get a bedpan under me. This is when  I realized that I probably peed the bed before.  Otherwise why would I have needed a bedpan?  Feel free to laugh……

But this story is important because it was my next indicator that I was okay.  I was super uncomfortable trying to maneuver myself into the position they needed me to be in.  I remember thinking that my nurse sounded like the character in the movie, “Incredibles”, that makes their superhero suits.  All kidding aside, it was during this time of movement that I realized I could move everything.  I could feel everything.  Want to know what I could feel the most?  MY NECK.  Holy Moses.  It was so stiff and sore.  It was like I couldn’t support the weight of my head.  BUT, I DID NOT have a headache AND I was thinking like me.  

After a few attempts, I asked the nurses if I could try to get up and go to the bathroom.  Their response was filled with shock, but they agreed.  They helped me sit up, gather my bearings, and held me on each side as I took a few steps to the mobile toilet.  I don’t remember going to the bathroom or getting back in bed, but I do remember thanking God that I could walk.  

My next memory is of my parents leaving.  I remember opening my eyes and seeing a bright light, like sunlight, which was different from before when I opened my eyes and it was very dark.  I was only conscious enough to hear my mom say that they were leaving.  

The next thing I remember is hearing a woman’s voice ask me if I wanted to shower today.  I said yes without hesitation.  But I also recall thinking, what day is it?  What do you mean, shower today?  How many days has it been since I showered?  I could sense though, without even asking, that it must have been a while.  I felt disgusting.  A shower sounded like heaven.

After that, I was wide awake and completely cognisant of my surroundings.  As far as I knew, this was day one of recovery.  I had no idea that four days had already passed.    

What did I know?  That I felt GREAT.  That my prayers had been answered.  That all my daydreaming of having a happy future were a possibility.  The only things I had left to do now was work my butt off to make it happen and  enjoy it while it came to fruition.

Monday, February 27, 2017

One Year Anniversary: Surgery by my Parents

The last time I was home I asked my Mom if she would have any interest in writing her and my Dad’s perspective about my surgery.  I have always found it fascinating to hear what other’s remember.  It’s like adding missing pieces to a puzzle.  To my surprise, she sounded eager to do it.  The next day she called me and told me she had written four pages front and back.  She said she couldn’t stop once she started writing.  Here is their story (my mom’s story with added tears and “make sure she knows we love her” from my Dad, the man of few words).

February 16, 2016  Linden’s 4th Birthday
Bill and I had plans to go to Carlos O’ Kelly’s for Linden’s 4th birthday with you, Patrick, and the girls.  Instead, I got an email from you, “Would it be OK if we skip tonight?  I am going home.  I don’t feel well.”  Wait, what?  These were my thoughts this time and every other time in the last two years and almost four months that you got a ache or pain, runny nose, sore throat, etc.  So I went home and told Dad I had a bad feeling that something was wrong.  I called you and you said that you were just tired and had a headache that wouldn’t go away.  I’m sure you were trying not to worry me, but I knew….I just knew…..So cue the many sleepless nights for the next month to come.  The nights are the worst with the quiet to leave you alone with your thoughts.  The what if’s, the how can I fix this (which I knew I couldn’t), the crying, and the prayers and pleading with God to make you okay.

February 17, 2016
I got up and went to work with about two hours of sleep.  At 8:00 am, my phone rang and it was Nathan.  Oh my God, I was terrified to answer it!!  He had been at your house and Patrick was going to take you to Mayo.  Nathan was going to follow you.  I called Dad and he told me to go with Nathan.  I just sent my boss an email.  I had to get out of there.  Nathan picked me up and told me there was a change of plans.  We were going to Sartori for an MRI. He told me you were having double vision, right side numbness, and facial drooping.  Here we go again, 10/25/2013 all over again!  You had been doing so well!  So for the next several hours, Patrick, Nathan, Dad, and I waited with you for the MRI results (we already knew what they would be), making small talk, watching Patrick pace, and listening to his phone calls to Mayo for further instructions.  

Nathan and Dad went to get food which I ended up taking two bites of---I just couldn’t eat.  Then, out of nowhere, you said the unthinkable to us, “I need to know that you guys will be ok if something happens to me.”  None of us could respond.  The whole time all I could think was, “Sorry, Jamie.  I know you want that to happen, but there is no way that I could ever make that promise because I know I would never be okay.”    

Shortly after, the results came that we were fearing.  Your CavMal was bleeding and you were having another stroke.  We all cried and hugged you and you said to me, “Mom, I am never going to be okay until this awful thing is out of my head.”  To which I responded, “I know,” knowing you had to have another bleed for surgery even to take place, but also knowing what could happen if the surgery didn’t go well.  

I then made a few agonizing calls to my brothers and sisters to fill them in on what was happening.  Soon after, Patrick had heard back from Mayo with the advice to send us home and come up to Mayo for an appointment on Friday.  Another, Wait? What? Moment.  How can she possibly be going home?  Why can’t they do something to stop the bleeding?  I knew they couldn’t though.  

So, we were left with good-byes, hugs, and I love you’s in the parking lot.  As Patrick and I hugged, he whispered to me, “I will take care of her.”  I had no doubt he would.

February 18, 2016
After another sleepless night and endless praying, I again went to work to try and take my mind off of what was happening.  After crying nonstop and people asking, “What's wrong? Go home.” and me not being able to talk about it, I called you and could tell how horrible you were doing.  So, I called Patrick and basically pleaded with him to take you to Mayo.  Poor Patrick--I know what Dad and I were going through, I can’t even imagine the stress he was under!!

About 30 minutes later, I again got a call from Nathan that you both had left for Mayo.  Thank God!  At least I knew that you would be under the best doctor’s care.  It wouldn’t be until later that I heard of how sick you were and the horrible trip that you were on.  Thank God for Patrick and his promise to take care of you.  You (we) are so fortunate to have him in our lives!

Dad, me, and Kelli (Patrick’s sister) went to your house that night to take care of the girls and tried to act as normal as we could so we wouldn’t upset them.  Jaelyn, Linden, and Myah bought it I think, but not Seeri.  She knew...she kept asking what was going on, where you guys went, and if you were okay.  I had no idea what to tell them.  

At about 8:30 pm, we got a call from Patrick and he told us that they had gotten your nausea under control and you were finally sleeping.  That was a huge relief until he told me the bad news.  He told us your whole right side was numb, your double vision was back, and that this stroke was worse than your first.  My heart sank!

February 19. 2016
After another sleepless night, Dad and I got the girls ready for school, worked out details with Kelli to pick them up from school, and took off for Mayo expecting the worst.  After getting lost in Rochester (you know us), Patrick’s brother, Tom, greeted us at the door.  He offered to park our car and told us that you were doing much better today.  They had given you large doses of steroids to reduce the swelling, the bleeding in your brain had stopped, and your numbness in your right side had gone away.  We couldn’t believe it!  It felt like a big boulder had been lifted off of my chest!  God had answered my prayers!

Two weeks of Limbo
After the decision was made that surgery needed to be done, that Dr. Lanzino didn’t feel comfortable doing it, waiting to hear back from Dr. Spetzler in Arizona (knowing that you only had a three week window before your CavMal would attach itself back to your brainstem), Patrick jumped into action again getting everything coordinated and plans made to get you to Arizona.  I got a call from you asking Dad and I, “How would you feel about going to Arizona to be there for the surgery?”  My initial reaction, “Who was going to take care of the girls, because we were going to do that?  They need us, we need to hold them tight.”  But yes, yes we desperately wanted to go!

Trip to Arizona
Leaving in a bad snowstorm, we took off in the ‘Bot’, the name you gave the funny Ford van that took us on our journey.  Even though we had some laughs about me not being able to open the door, I have special thoughts whenever I see one driving on the road.  I had also broken out in hives all over my body from all the stress, so I lived on Benadryl and Calamine Lotion throughout the entire trip.  At least the Benadryl helped me sleep at night.  After long days of going through Nebraska, Kansas, and New Mexico we finally arrived in Arizona to this gorgeous condo the Patrick was given through your friends.  

The next day brought about another MRI, meeting with Dr. Spetzler, and Nathan’s arrival.  At the end of that day, you filled us in on the procedure, what he was going to do, how difficult it was going to be, and how you were sure to have deficits after the surgery.  These were words I did not want to hear!

While we were eating that night, we got a call from Chelsea.  She was a basket case wishing she could be there with us.  She was full of worry.  I assured her that you were going to be fine and that you had the best surgeon in the world.  There was no way she could have come because she was six and a half months pregnant with Kamrie.  

We got back to the condo and watched the heart wrenching Facebook call you placed to the girls.  They didn’t want to say goodbye and you and Patrick were crying so hard.  All I could think was that you were doing the right thing, how Bill and I’s roles were going to change, and how we would have to help out even more with the girls during your recovery.  

I know I am leaving many details out, but I could write forever about all my emotions and all the events that transpired during that two weeks of limbo.

March 4, 2016 Surgery Day
This is a day I will never forget!  At the tender age of 34, my daughter was going to have brain surgery.  “Oh my God, please dear God guide the surgeon's hands and take care of our precious Jamie.”  How were we ever going to get through this day?  

Nathan, Dad, Angie, and I drove to Barrow Institute, a place we had gotten comfortable with the last two days in the Phoenix traffic.  These people were going about their days, going to work, taking kids to school, and we were going to the hospital for my daughter’s brain surgery!  

Once we arrived, the morning was filled with listening to the nurses, anesthesiologists, and surgeons again discuss all the horrible details of what was going to unfold.  We all took our turns going to the bathroom when it was really just to get away to cry.  We tried to hold it together for you.  

We took pictures and you were given something to calm you.  You were wheeled away and when the operating doors closed, Patrick lost it!  Angie and Nathan went to him to console him.  Dad and I stepped away because we would be no comfort to him--we couldn’t even comfort ourselves.  

The next 10 hours were agony.  We spent the time reading ALL the prayers and posts from your ARMY on Facebook.  The outpouring of love, prayers, and support was overwhelming!  I truly believe none of us would have ever gotten through this day without Nathan, Angie, and all of the prayers from everyone.  

Our daughter-in-law, Ashley, sent cards along with Nathan so we played 5 handed pepper until Patrick couldn’t take it anymore and went back to pacing.  After about eight hours or so, we got notified that surgery was complete and that Dr. Spetzler would meet with us.  

We all went back to the room and Dr. Spetzler commented, “Lot’s of you here.”  He told us that your surgery was difficult because your first stroke was so massive.  Your CavMal had literally blown apart, so he had to take it out piece by piece.  He said the surgery couldn’t have gone any better, although it was extremely difficult, and that you had done very well.  He stopped short of saying that he had gotten it all.  He felt he had, but wouldn’t know until the MRI was taken.  I was trying to hold it together to hear what he was saying and thank him ever so much for what he had just done, but instead I found myself only able to cry.

People had told me that I was strong for being able to get through this, but that was far from the truth.  I was an absolute hot mess!

We headed back to the waiting room and talked to the fellow and the anesthesiologist.  We asked them all of the tough questions and were beginning to feel more confident about the success of the surgery.  But no one told us it would take two and a half hours to close, so we were worried about what was taking so long.

Recovery
I have sat through 14 surgeries with Dad and several with my parents and every time I would be able to see them about an hour and a half later.  Even though they would be out of it, they would be able to talk.  This was not the case with you.  We couldn’t believe all the tubes and apparatuses you were attached to.  We would go in and sit with you, hold your hand for 5-10 minutes, and then go back out again.  

There was virtually no big response from you for the next one and a half days we were there.  Unless you count the relentless vomiting that continued for days.

March 7, 2016  Flying back to Iowa
Patrick picked us up from the condo so we could go to the hospital to say goodbye.  We had gotten the news that we were anxiously waiting and praying for.  They had gotten it ALL!!  It was music to our ears!  Thank God for Dr. Spetzler, Barrow Brain Institute, Your ARMY, and ALL the prayers and support!  God is GOOD!  Thank you!  Thank you!  Thank you!

We said goodbye, although I don’t even think you knew we were there.  You were still really out of it.  Patrick took us back to the airport.  Even though it was hard to leave, I knew in my heart that we were all now going to be okay and we had to get back to your precious girls.  We left again with Patrick telling me, “I’ll take care of her.”  I, again, knew he would.  


I have rambled on and on.  I left out a lot of details, but some are just to painful to remember.  I am still so very thankful that everything happened the way it did, because we have our precious Jamie.  

Dad and I love you, Jamie!  More than you will ever know!  

Sunday, February 26, 2017

One Year Anniversary: Surgery by Patrick Part 2

I feel asleep within seconds of finishing that post.  I slept hard and was awaken by the discussions of doctors like I have been so often during Jamie’s hospital stays.  For a second I thought that I was dreaming because I could hear Dr. Spetzler’s voice.  Why in the world would he be here?  He should be on his way to Hawaii.  I finally realized that it was real and that I better get my butt up out of bed to hear what they were saying.  In my half awake/half asleep stupor I asked the good doctor, “What are you doing here? I thought you were gone for the week?”  He replied, “I wanted to see your wife prior to leaving.  She looks remarkable”.  

I rattled questions off as fast as I could.  When is the MRI?  How long will it take?  Who will read it now that you are gone?  I was a pitching machine of constant questions to which he steadily deflected or fouled off.  “We will know more once the MRI is done” or “Time will tell, take it step by step,”  Dr. Spetzler reassured me we were in the best of hands and he and his little entourage of doctors left as quickly as they came in.  It was 4:45am.  

To be honest with you, Saturday is a blur in my mind.  Jamie would open her eyes and be in and out of consciousness for the majority of the day.  Whenever she woke up it was for a limited time and the vast majority of what she said did not make any sense.  She was so high on narcotics to dull the pain of the surgery that she had no idea what was going on around her.  

Throughout the day the five of us split time between Jamie’s ICU room and the ICU waiting room.  We also had to say goodbye to Nathan as he was scheduled to fly back to Iowa.  Jamie stated it earlier in this blog, “Nathan has always been very strong and it has a contagious effect on me...he would serve as a center of strength for me and a pillar of calm…”.  It was hard to see him go for this exact reason.  He provided that strength and calm for us over the past 48 hours.  I hated to see him leave, but knew his duties as a husband and father awaited him at home as well.  I will never forget what he did for us in our most desperate time of need.

The day continued and I honestly was only focused on one thing and one thing only-- the MRI.  The nursing staff probably nicknamed me the, “crazy husband asking about the MRI every 20 minutes,” but I knew the importance of what this would tell us.  It had been expressed to me multiple times that a large amount of trauma victims came into the hospital overnight and they drew precedent over Jamie.  What I was once told would be an early morning MRI turned into a late afternoon MRI.  

Bill, Mavis, Angie and I rotated in and out of the room with Jamie.  Arch madness was on the little television in the waiting room so I escaped reality by tuning in to watch the UNI Panthers during their NCAA run.  I sat there with a blank stare at the screen simply trying to turn my brain off.  

We were finally alerted that Jamie would be taken back for her afternoon MRI.  It was so late in the day that my biggest fear would be that no one would be able to read it because of how late it was getting.  Jamie was gone for about 45 minutes and she returned oblivious to what had just occurred.  
Time continued to pass by and I knew, I knew in my gut, “This thing is not getting read today.”  Sure enough, the news came that the reading would take place tomorrow, Sunday morning.  I was shattered.  It took everything I had not to come un-glued on someone.  Another night of unsteadiness was ahead.

I returned Bill and Mavis to the condo in Scottsdale and came back to the ICU to join Angie and Jamie.  Angie’s flight was early in the morning so instead of traveling all the way up to Scottsdale and then back to Mesa we both decided it would be easier if she stayed at the hospital with us.  Angie and I let Jamie rest in the ICU as we talked in the ICU waiting room.  

My nerves at this point were shot.  The ‘what if’s’ were popping into my head.  I kept bouncing things off of Angie and she continued to reassure me that, “Everything is going to be fine, Pud.”  You see I was prepared for the day of surgery and what it was going to entail, but what I was not prepared for was the 36 hours after surgery.  This MRI reading was going to provide us with clarity, a sense of relief, or heaven forbid, a whole other challenge.  

Angie insisted on sleeping in the ICU waiting room.  If you were to ask Angie I doubt she slept at all that night.  The security guards refused to allow people to turn off the lights in the ICU waiting room, so Angie aligned two chairs across from one another and slept sitting up for the majority of the night.  I returned to Jamie’s bedside to rest.  We couldn’t have slept for over a few hours.  

Angie and I left early in the morning to head east towards Mesa.  The drive at 4am is pretty simple and easy.  But with each mile we traveled it was hard for me not to be saddened about losing another member of our team.  Angie started this journey with us the day we left unexpectedly to Mayo all the way back on February 18th.  She had traveled this path with us when she honestly never had to.  She was Jamie’s Matron of Honor in our wedding and for the past three weeks she stood directly by her side like she did on our wedding day.  It was undoubtedly hard for me to let go of her as we hugged and said goodbye.  She has always meant so much to us, but even more so now.

I climbed back into our Ford Transit, brushed away a few tears, and headed back to the hospital.  I was bound and determined to get back there prior to the doctors doing their rounds.  The last thing I wanted was to miss them and delay hearing about the MRI reading.  I hustled into the hospital, sat patiently next to Jamie, and waited for the entourage to come in.  6am turned to 7 and 7 to 8 and so on.  I knew that Bill and Mavis would want to come and see Jamie as soon as they could, but I knew deep down inside that I needed to be the one to hear the news first.  I wanted to be the one to paint the picture of positivity if all hell broke loose with what we heard.  Selfishly, I wanted to be alone with Jamie if the news we heard was what we had been praying for.  

Around 9am I finally voiced my frustration to our nurse.  We had been waiting far to long in my opinion for this reading to occur.  The nurse assured me that they would be around soon to go over the results with me.  It was within 15 minutes of that interaction that he came into Jamie’s ICU room and handed me a phone, “Mr. Smith, Dr. Spetzler’s office would like to talk to you.”  I was in shock that they were legitimately handing me a cordless phone and escorting me across the hall to an empty classroom.  My heart was racing.  I could feel my pulse in my neck throbbing and my throat tightened up.  It was easily the scariest, most intense, agonizing walk I ever had.  

I put the phone up to my ear and said, “Hello.”  The doctor on the other side stated her name and that she was with Dr. Spetzler’s service.  She apologized for not being there in person, but she understood from staff that I was anxiously awaiting the results.  I leaned up against the wall with tears already flowing down my face.  What she was going to say in the next 10 seconds may shape the rest of our lives.  The doctor continued on by saying, “Mr. Smith, we have had a chance to review the MRI and we can confirm that a complete and total resection of your wife’s CM occurred during surgery.”

I will admit to you at this point that I was digging into my brain for the definition of resection.  I even stated to the doctor, “can you give it to me watered down?”  I was so mentally exhausted at this point that I just needed a, “We Got It.”  The doctor said to me, “Mr. Smith, we could not be happier with what we see on the MRI scans.  We successfully removed your wife’s CM”.

I crouched down to the ground, put my head into my hands, and completely lost it.  I thanked the doctor for the news over and over again.  I don’t know if she knew what I was saying as I was trying to talk between sobs of joy.  She concluded the call with her congratulations and hung up.  I sat there in tears, with the weight of the world slowly leaving my shoulders.  The poor nurse that escorted me into the room had to have thought the worse.  My celebration looked more like a grieving session to an outsider, so much so that he came into the room and asked me if I was okay.  Everything that had been building up inside of me since October 25th of 2013 had been released.

The nurse escorted me back to Jamie's room.  I was crying so hard that when I leaned over to hug Jamie I could feel my stomach convulsing uncontrollably.  Jamie woke up just enough for me to say to her, “They got it.”  She replied back to me in a drugged state, “That’s good.”  I held her…...she had done it and didn’t even know that she did!    

I knew that Bill and Mavis had to be chomping at the bit to get back to the hospital.  They had no transportation at the condo so I decided that I better go and pick them up.  I purposely did not call them to tell them the news.  I wanted to be able to tell them face to face.  The trip back to Scottsdale was not a drag like it was the previous days.  It was joyful.  The sun was shining and the radio was turned on.  I actually had a smile on my face for what seemed like forever.

I entered the condo to Bill and Mavis standing there anxiously awaiting my arrival.  I couldn’t have been in the door more than two feet when I blurted out, “They got it.”  I gave both them a big hug and they of course had questions galore as to what “They got it” meant.  But for the first time all trip we joyfully celebrated what we came to Arizona to accomplish.

We returned to the hospital and Bill and Mavis spent time with Jamie as we all continued to bask in the glory of the news we received.  The rumors on the ICU floor started to pick up steam that Jamie would be well enough to move to the neuro-surgery post-op floor.  I was quite pessimistic about this move because Jamie hadn’t even really woken up from her surgery yet to carry on a conversation.  But, sure enough in the late afternoon I was watched my wife get wheeled out of her ICU home and pushed down a hallway to an elevator that would take us to our home for what would be the next eight days.  6N47 had a shower, a cot, and Jamie’s new bed!

Jamie would start to come in and out of consciousness more frequently and stay with us for longer periods of time.  She was still sedated and under extensive pain management for the 5 inch incision she had on the back of her neck.  Bill and Mavis would remain with us in our new setting until it was time for me to take them back to the condo in Scottsdale.  We established a plan that I would come and get them early in the morning so they would be able to see Jamie and then take them to SkyHarbor for their return trip to Iowa in the morning.

The evening came and went.  As like any hospital setting minimal activity occurred during that Sunday.  I knew in the morning we would be inundated with physical therapy consults, occupational consults, and other medical professionals coming in to check on Jamie’s progress.  We rested and prepared for what was to come on Monday.  

As like the previous mornings, I was up and at them earlier than usual.  It was time to go pick up Bill and Mavis from the condo in Scottsdale.  They had a tremendous set up at the Scottsdale Links Condos all because of our close friends Scott and Shannon Farlow provided their timeshare for us.  This was just another example of incredible people watching over and caring for us.  We checked into these condos five days prior scared, nervous, and uncertain of our future.  As we pulled out of the complex parking lot we had a renewed sense of hope and happiness.

We made our way down the interstate towards downtown Phoenix like we had done so many times in the past five days.  I knew it would be the last time I traveled down this road as the remainder of my stay would be in the hospital with Jamie.  We arrived at Jamie’s new room with limited time for Bill and Mavis to say their goodbyes.  I think they felt the same way as I did, wishing they could stay longer with us.  But we all knew that they were needed back home to watch over our girls.  My brother, Tom had taken the brunt of the care for the children since we left.  Between Tom, my brother Jon’s family, my sister Kelli’s family, Chelsea and Joe, and Nathan and Ashley,and our close friends, the kids were being taken very good care of.  Spoiled rotten would be a better definition of their time with our family.  We knew that having Grandpa and Grandma home would provide consistent care and more normalcy in their lives.  

Bill and Mavis gave their love and hugs to Jamie one last time prior to loading up for the airport.  I had a sense of how medically sedated Jamie was, but not until later did I find out she had no recollection of saying good bye to them.  With tears and regret Bill and Mavis were ready to leave for the airport.  

I have traveled with Bill and Mavis before and flying certainly was not their favorite thing to do.  I knew that I had to do my best to remain calm and get them to the airport with sufficient time to get their tickets, check their baggage, and get through security.  Sounds easy to do, but I by no means am a world expert traveler myself.  Traffic: I’m not a fan.  Airports: quite honestly not my favorite place to hang out.  Trying to navigate, drive, and get people to an airport that I had never been to was not my idea of fun.  Mesa was a little puddle jumper airport that just flew Allegiant.  Skyharbor on the other hand was THE airport in the metro and BUSY.   

We came in to the airport and started to navigate towards short term parking.  We went up a spiral staircase of a road to the parking ramp where we found a parking spot on the fourth level.  I remember taking a picture of the parking ramp sign to ensure I would be able to find Bot on my return back to the car.  Bill, Mavis, and I nervously walked our way into the airport and found our way to the departure area.  I showed them the new technology of generating their boarding pass by entering their credit card.  We proceeded to the airline clerk and they checked their baggage.  I walked with them all the way to the security checkpoint where the friendly agents of TSA met them.  

It was here that it hit me: these two are heading back home it was just Jamie and I left in Arizona.  We hugged, tears fell down cheeks, and they turned to head through the security lines.  I remember standing there watching them walk back and forth through the lines until they got to the metal detectors.  I chuckled to myself because if anyone was going to get pulled aside by a TSA agent it was going to be Bill.  The guy has so many metal rods in him from his countless surgeries that the detector had to throw up red flags.  A few minutes went by and  my view of them became blocked by other passengers.  Soon thereafter, I saw the big right paw of Bill’s hand go up and signal, “We made it!”  All they had left was finding their gate.  I turned around and headed to find Bot.  

When I got back to Bot, I put both hands on the steering wheel and began to cry.  It was the first time that I didn’t have Angie, Nathan, Bill, or Mavis with me.  A very real sense of holy shit came over me.  It was Jamie and I left in Arizona and it was up to us to return to our family in Iowa.  

As I returned to Jamie’s side, I had calmed down and really had a much better mindframe as to what we were going to accomplish.  I came to the conclusion that this was Jamie and Patrick time.  I did not have anyone other than Jamie to be concerned about.  The kids were cared for, our Arizona army had returned to Iowa, it was our time to come together and fight our asses off to get home.  That would be the mentality we would have for the next eight days.     

Over the next twelve hours Jamie made progress that to this day still shocks me.  She would have her first PT and OT sessions.  She would be out of bed for the first time and go for a walk around the neuro floor.  She would hold longer conversations with me.  I knew she was out of it as she was foggy and medicated heavily.  What I did not realize is that she had limited recollection of anything between Friday morning at 9am and to this point in our journey.  It was the end of Monday, March 7th, 2016.  

When Jamie asked me to do this, I thought about it for an extended period of time and did not know whether I was ready or able to put these thoughts on paper yet.  It still feels so raw and fresh.  It feels like someone else lived this journey and I was watching it as a spectator.  There have been moments over the past year that I have been so numb to, in awe of, and honestly pinching myself to see if I was dreaming or having a nightmare.  

Over this past year I have had conversations that I had never imagined I ever would.  I have asked questions that no one ever wants to ask.  I had to take a long hard look in the mirror and ask myself if I had the courage to do what was needed to be done.

Am I happy that we had to go through all of this?  NO.  Am I thankful that I will have this perspective on life moving forward?  Absolutely yes.  

The doors that have been opened for us would have never been doors that we would have opened willingly ourselves.  We are grateful, tremendously grateful for what we have endured over the past three and half years.  We have learned lessons that normally are not learned so early in life.  We now have the opportunity to live knowing these experiences have made us better.  

So that we may Do Better.  Be Better.  every day for the rest of our lives.