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.

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!  

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.  

One Year Anniversary: Surgery By Patrick Part 1

Writing about surgery has been my most difficult post thus far.  It was an insanely emotional ride.  I was also heavily sedated for four days after my surgery and have many blind spots of my immediate recovery as a result.  I enlisted Patrick to help write this to help fill in the holes.  More so, I want our girls to understand that their Daddy is my hero ….….and I have no idea what to say to finish this paragraph.  Instead, picture me at the island of my kitchen, at 11:53 p.m. on a Friday night, bawling my eyes out as I empathize with what he went through those four days.  I am not sure if I would have made it if the roles were reversed.  

Here is Patrick’s perspective on my surgery:

The alarm sounded.  I had slept hard through the night which I thought was odd knowing the day we had ahead of us.  Honestly, at this point in the game Jamie and I were so mentally and physically exhausted that we were walking zombies.  My body and my mind were in shock.  We had just driven to a hospital on the other side of the country to have brain surgery.  (Still hard to believe one year later)

I showered, got ready for the day,and chose to wear my Do Better.  Be Better shirt.  We said our goodbyes to family at hours of the morning that are intended for sleep.  We traveled down the flight of stairs to our rental car and I directed us from Scottsdale to downtown Phoenix.

I remember two things in our drive very distinctly.  One: It as a Friday morning and the traffic in the Phoenix metro area was intense at the time we were driving into the hospital.  Two: I remember turning to Jamie and expressing to her, “You are having brain surgery today”.  It was so surreal to hear that come from my mouth.  

We arrived at the hospital parking ramp and proceeded into the pre-op area.  I remember how full the area was and how the board on the wall showed all of the surgeries for the day.  I glanced at it during our wait.  Jamie’s surgery was to take 8 to 10 hours, certainly Dr.  Spetzler would not have anything else scheduled for the day right?  Wrong.  The good doctor had 2 other surgeries on the docket for the same day.   I couldn’t believe it, but knew that he had his support teams around him and he was probably only going to be in Jamie’s surgery for a small yet critical portion of time.  

We were escorted back to our waiting area.  Jamie and I snapped a few pictures with our Do Better.  Be Better shirts on.  We made small talk during the anxious time of nurses, doctors, and staff coming and going.  We anxiously awaited Jamie’s family to join us.  Upon their arrival, we continued to take pictures and converse trying our best to avoid what I knew was to come.  The moment I was dreading.  

The time was near.  We knew only a few more medical professionals would be by to prep Jamie for the surgery.  The  anesthesiologist was the most critical of everyone.  He explained some significant details as to what his role was in the surgery.  At this point in the game, I was numb, scared, and simply did not want my wife to leave my side.  It was time, time for Jamie to leave for her surgery….for brain surgery.  

Jamies parents (Bill and Mavis), brother (Nathan), and best friend (Angie) said their “See you laters” (not goodbyes) to Jamie.  It was my turn.  We snapped a quick selfie to remember the moment and the anesthesiologist administered the sedation drugs to relax Jamie prior to wheeling her back.  I gave her a kiss and started to walk with her back to the “Can not go Beyond” doors.  Jamie’s hand relaxed, her speech slurred, and as I looked into her eyes they faded.  The drugs were working, she was headed off to surgery.  I walked with her as far as the medical staff would allow me to.  I kissed her forehead and watched her go through the doors.  

It was at that moment in time I had a flashback to being twelve years old watching my mother go through similar operation doors to have her right breast removed to stymie the cancer.  I literally lost it.  I couldn’t hold it in anymore. I could not hold back the emotion: the worry,  the stress, and the pure and significant amount of fear that I had.  I knew that I could not let the others with us see me, so I literally ducked into an unused pre-op area to try and hide my emotion.  I doubled over sobbing.  I lost every ounce of composure that I pretended to have.  It felt like minutes went by, but in reality it was probably only seconds, until Nathan and Angie came to my side to help me regain my composure.  I had to do everything I could to stay strong and hold it together for Bill and Mavis.  The thought of watching one of my own girls fight for their life is gut wrenching and they were living it in real life.    

We gathered our belongings from the pre-op area and headed to the surgical waiting area.  This would be our home for the next 8 to 10 hours.  We were one of the first families to arrive in the waiting room. We set up camp in one of the corners of the waiting room that had a circular table and enough chairs that we all could comfortably sit around it.  I looked around the area and it seemed more like an airport than surgical waiting area.  It had a huge monitor at one end of the room that showed patient number and status of that specific patient's surgery.  It was 9AM.  

Nathan and Angie offered to go and get some breakfast for everyone and I knew that I had to get some air so I tagged along.  Bill and Mavis stayed back to watch our belongings.  We found an amazing little diner across the street from the hospital called, “First Watch”.  You could tell that a lot of their business came directly from hospital staff as many of the customers were in scrubs of some sort.  We ordered, we ate, and I remember thinking to myself how surreal this whole experience was.  My body was in full blown shock.  

We arrived back at the waiting room with food for Bill and Mavis.  I noticed that I had left my phone in the waiting room while we were gone to eat.  (I must have been in shock, because when do I ever leave that thing behind?)   I picked up my phone to a mass barrage of messages.  I had hundreds of messages on that phone.  My tears fell.  Text messages from friends near and far, emails from co-workers/clients, and Facebook posts that would have taken me a year to respond to all of them.  The amount of support, prayers, good vibes...selfishly, it was what I needed.  We were an army of 5 in foreign land and simply knowing that we had so much support coming from back home….it meant everything.  

It is fair to say I was a nervous nelly.  I was at my wits end.  The littlest of things would get to me.  I needed my alone time and I needed to find my place.  I left the others behind in the waiting room and said I was going for a walk.  I knew exactly where I was headed; the Chapel.  St. Joseph’s hospital had one of the most beautiful hospital chapels that I had seen.  The chairs were wooden with maroon padding.  I sat quietly and peacefully reciting the Our Father, Hail Mary, and Glory Be.  I stared ahead at the large archway that held the altar and crucifix clutching my hands in prayer as hard as I could clasp them.  I called upon my Mom as I tend to do in time of need.  This was undoubtedly the hardest time I have ever called on her.   

My nerves seemed to settle.  I had seen a sign for a ‘healing garden’ on my way from the waiting room to the chapel, I thought it might be a nice place to go check out.  The sun was warm to my skin and certainly a welcome feeling coming from the Iowa winter we had just left four days earlier.  The healing garden was an outside area filled with trees, rock gardens, water fountains, and benches.  I did not realize it at first sight, but this would be my go to place for the next ten days.  It was so peaceful and inviting.  A place that you could come visit to let all your worries vanish into the Arizona sky.  

The timing of the day is a blur.  At this point it was probably close to noon.  I returned to the waiting room much more like the version of Patrick that I aim to be rather than the one that left a couple hours earlier.  A card game that the Garbes family enjoys to play is Pepper.  The five of us pulled out the deck of cards and pretended to the best of our capabilities that we were not in a surgical waiting, but in a living room in Dunkerton playing cards like we so often do.  

The card game allowed a portion of the afternoon to pass.  One or two of us would come and go as we pleased.  Taking walks around the medical facility, visiting the cafeteria/Starbucks on the main floor, and checking out the gift store as well.  Just yesterday sitting in church with Myah I opened up a pocket of my UNI coat (that I had not wore in quite some time) to find a guardian angel pin that Angie had bought for all of us.  It was more than just a simple pin, it was a symbol of hope.  

Throughout the day the surgical waiting room grew in attendance.  There was a mixture of tears, sadness, fear, and for some, happiness.  I remember very vividly a family going to the counseling room to meet with their physician.  They came out so happy and cheerful to what I would assume was the news they had all been hoping and praying for.  A part of me was mad, did that family not have enough respect to know that others in the room were still in the state of fear/sadness that they were just relieved of?  The other part of me was envious.  Will that be us coming out of the counseling room with smiles and joy?  

The waiting room had what I would call a surgical liaison that would come and update you with any information that she had available.  She would come over and say, “Yep, she is still in surgery, everything is going fine” or “Just went back, all is looking good”.  She knew that every time she came up to our family that we all sat at attention and begged for any glimmer of hope/information.  We had to look like a hungry chocolate lab eagerly awaiting her treat (Molly, our dog niece ; ).  

The time was close to 3:30 in the afternoon Arizona time.  Jamie had been back in surgery for over six and half hours.  The little waiting room liaison approached our table and instead of the simple everything is, “going ok” blurb that we got all afternoon she gave me the, “Hold tight and don’t go anywhere.”  Then she walked to another part of the waiting room to speak to a different family.  I legitimately lost it.  I popped up from my seat, raced to catch up with her and dropped an f-bomb.  I was beyond fired up-- my wife has been in brain surgery all day and you walk by us and tell us to hold tight?  What does that mean?  What happened?  Why did you not give us information right away instead of walking to a different family?  It was a perfect case of an employee losing touch with how important of a role she played in the livelihood of other humans.  Should I have done what I did?  Absolutely not.   When she finally calmed me down she expressed that Dr. Spetzler was done with his portion of the surgery and he would be in shortly to speak with us.  That is all she wanted to let us know….

I returned to my seat with a blood pressure that had to be 220 over 120.  My face was red and my ears were burning.  I explained to the family that Dr. Spetzler would be out to consult with us soon.  Everyone checked their watches and started to calculate in their heads how long she had been back there.   Six and a half hours which was earlier than we thought.  Millions of questions started to go through my head.  Were they able to get to the malformation?  Did something occur during surgery that caused them to turn back?  It was very challenging for me to not think of the worse.  

Minutes went by, they felt like hours, and finally we all were escorted back to the briefing room that we had seen so many other families go back towards throughout the day.  As we walked in Dr. Spetzler was already there.  I introduced Bill, Mavis, Angie, and Nathan and sat there awaiting the words that could sway our lives forever.  He and his staff were very calculated and guarded when speaking about the outcome of the surgery.  I would imagine from a legality standpoint they were not wanting to promise or guarantee anything with this type of a surgery.  They advised us that it went as planned.  Time would tell and a post surgical MRI would be necessary to measure how successful the procedure was.  All five of us drilled them with questions and their answers were like broken records.  “Time will tell.”  “One step at a time”.  It was not the guarantee or the rush of joy and excitement that I was so desperately yearning to hear.  I thanked the Dr. as I thought it would be the last time I saw him for a week.  He was off to Hawaii for vacation.  We were informed that Jamie should be “closed” up within the hour and we would possibly get to see her by 5:30.  

We all walked out of the briefing room.  I didn't know how to feel.  Was what we just heard good news?  We sat down at our table and looking at everyone’s reaction, we all were beaten down.  If it wasn’t for Nathan, I would have remained beaten.  He brought the positives directly in front of my face.  The worries I had before had been laid to rest.  They were able to get to the CM, they were able to remove it to the best of their capabilities.  We had to view the surgery a success until we knew differently.  We had to take a breath.  

The hour came and went. I anxiously awaited the beeper in front of me to buzz telling me Jamie was being wheeled back to recovery.  I glanced up to the airport board to see if her status would change from, “OR In Room” to “In PACU”.  Soon it was 5pm and the waiting room liaison that I verbally gave a bashing to was about to leave.  She came over and gave us her best and advised us a student worker would take us from there.  The waiting room was nearly empty.  We were one of the first ones in this room eight hours ago and now would be one of the last ones to leave.  She gave us the last update stating that they were still closing Jamie’s wound.  The hour that Dr Spetzler gave us was not the most accurate of timeframes.  It was dinner time and everyone was hungry, so I advised the others to go get some food.  I would hang tight to wait for Jamie to get moved to recovery.  

Everyone headed to a pizza place close to the hospital for dinner.  I had stayed back huddled in the corner of the waiting room.  I scrolled through Facebook to pass the time.  I had completely forgotten that my alma mater, Turkey Valley, was playing in the state basketball championship game.  One of the Facebook posts I saw was a link to the game.  I uploaded the link and there I sat in a hospital waiting room watching the Lady Trojans.  They were down big when I started to watch, kinda had one of those moments where I said to myself, “At least they made it this far”.  Slowly but surely they started to chip away at the lead.  I can’t remember the specifics.  They were down close to 20 points and the next thing I knew they were winning late in the fourth quarter.  I was so engrossed in the game that the buzz of the pager they gave me frightened me when it went off, “Patient Going To Recovery”.  Finally, I was getting closer to seeing her.  It was 7:30pm.  

I stepped out into the hallway to stretch my legs.  A person I recognized walked by me, it took a minute to put two and two together.  It was Jamie's anesthesiologist!  What do you suppose i did, you bet your ass, I chased him down the hall and stopped him.  How did surgery go?  How is she doing?  Did she bite her tongue like you said could happen during the surgery?  I bombarded the poor guy with 20 questions before he could answer one of them.  He walked me back to the waiting area and we sat down to discuss the procedure.  He assured me that she was a trooper and that the surgery was very successful.  At this point, I took a deeper breath.  

The young student waiting room attendant walked over shortly after the anesthesiologist left.  She said, “Mr. Smith?  They are ready for you back in the recovery area.”  FINALLY, I was going to get to see Jamie.  I walked back with her to the recovery area.  She told me to wait here and she would go to check and confirm they were ready for me.  She came out a very short time later and escorted me back to the recovery area.  I remember lots of cubicle-ish pods that had walls on three sides and a curtain on the front.  She pulled the curtain back and kind of gave me the “Ta-Da” look.  There in the recovery room was a lady that I didn’t recognize, didnt even know who she was….it was not Jamie.  I turned to the young 20ish old and said, “That is not my wife”.  As you can imagine, I was swiftly escorted back to the waiting area and apologized up and down to.  All I wanted to do was see her.  

Time continued on - Bill, Mavis, Angie, and Nate arrived back from the pizza parlor.  I scarfed down a slice of pizza faster than Rafael, Donnatello, Michaelago, and Leonardo could.  Once again the young lady came over to me and said, “NOW, they are really ready for you.”  It was time, finally time!  

We walked the same path back as we did before.  This time there was no waiting, she took me directly back, and introduced me to Jamie’s recovery nurse.  She stated that Jamie was doing well, but she had some vomiting episodes that they needed to have under control prior to bringing me back.  I wanted to say, “enough already with the chit chat, let me see her.”  They opened the curtain and there she was.  Resting.  Peaceful.  As I walked up to give her a hug, she started vomiting again.  Fierce and violent thrusts as she vomited into her oxygen mask prior to the nurse removing it and providing a pan.  It was all so much to comprehend and all so much to view at once.  She was not intubated like they all had stated she would be.  She had all of her hair-- I thought for certain they would be shaving a portion of her head to get to the incision site.  For all things considered she looked….amazing.  I hugged her, kissed her forehead, and thanked God for helping her through the surgery.  Minutes went by and I knew the others waited anxiously. I returned to the waiting room to allow Bill and Mavis to go back.  

With each of our support crew that went in, they all came back with the same marvel that she looked wonderful.  We all knew it was going to be an intense battle to get her back to 100%, but the first step, the largest step, was complete.  

As we waited for Jamie to be placed into an ICU room, I noticed Dr. Spetzlers right-hand man walk by the waiting room.  I once again showed my 34 year old quickness and tracked him down in the hall.  He recognized me and said of course I was just coming to brief you.  This doctor was with Jamie from start to finish.  He opened up the site and closed it down as well.  The five of us met with him in the briefing room.  Once again, questions upon questions were being asked.  Many of them were by me and many of them may have been the same I asked Spetzler earlier in the day.  He had much more time to answer them.  He went into far more detail than anyone had done before.  Almost every answer involved the post-surgical MRI.  “We will know more once we have the MRI back”, “That can be answered with the post-surgical MRI”, “We will know if we got it all after viewing the post surgical MRI”.  

The one comment he made that I will never forget was, “Dr. Spetzler has done this surgery over 500 times.  He knows the difference between healthy brain stem that is blood stained and cavernous malformation which needs to be removed.  Once you remove healthy brain stem, you can not put it back”.  Holy meatballs, did he just say that!

After every question was exhausted, we let the doctor go, after all it was close to 9pm on a Friday night.  He was finishing his studies under Dr. Spetzler and in June he would “graduate” and head back to home in Buffalo, New York.  

We gathered our items from the surgical waiting room and headed up to the ICU.  There was strict rules to follow regarding the ICU.  No more than two people could go back to see Jamie at a time.  The rest of us stayed out in the ICU waiting room with other families.  There were couches and chairs to rest in and a television to watch to pass the time.  

I went back first to see Jamie.  She had her very own room and her very own nurse assigned to her.  The nurse had a station set up directly outside of her room.  In the room was a small couch, rest room, and obviously Jamie’s hospital bed.  It would be our home until Jamie was well enough to move to the surgical recovery floor.  

As I returned from the ICU room, Bill and Mavis went back to see Jamie.  When they returned Angie and Nate took their turn.  It is hard to recall all that happened during this span of time.  All I remember was being exhausted.  

As the other four decided to head back to the condo to get some rest, I returned to Jamie’s side.  I was rubbing her head and sitting by her side when she narrowly opened her eyes to me and gave me the sign language sign for I love you with her right hand.  It took everything that she had to open her eyes for a few seconds and lift her hand enough for me to notice what she was trying to say.  With that she closed her eyes, March 4th, 2016 was over and will go down as a day we will never forget.  

I took to Facebook to update everyone of Jamie’s status.  Below is my post from that night.    

March 4th-

“Today my wife had brain surgery”.  As many times as I say that in my head I still don’t believe the day we just had.  I remember turning to Jamie this morning on our way to the hospital saying that very same thing, “You are having brain surgery today,” as we both just looked at each other in disbelief.  

If I had to describe the day we just had well…..IT. WAS. LONG.  It started with pre-op check in, difficult conversations with doctors dealing with exactly what they were going to do, and of course the challenging hugs and kisses prior to surgery.  Then came what I would expect to be the longest hours of my life.  The wait…..no words.  I am so thankful for Jamie’s parents, her best friend, and her brother for being here.  I wouldn’t had stayed sane if it was not for them….and all of you - the messages - the prayers- they were tremendous.  

As for our current state - Jamie is resting peacefully in her ICU bed as I lay next to her on a cot made for umpa-lumpas (seriously my feet are hanging over the cot by a foot).  I am thankful, I am beyond thankful….its deja vu for me as I flashback to Iowa City 2.5 years ago.  I have not been able to carry on a full conversation with Jamie as she is still heavily sedated, but about 5 mins ago she gave me the, “Smith Family Secret I Love You” sign, it brought tears to my eyes.  The plan is for her to rest and let the anesthesia wear off.  Some time tomorrow they will conduct another MRI of the impacted area.  As I have said before, she will get worse before she gets better.  The surgery acts almost as if another bleed occurred.  We are aware of this challenge and we are ready to battle together, “Step by Step.”  

At this point, I honestly am so exhausted that I don’t know if this post will make sense, but I will leave you with this.  

Today is the only day of the year that tells you to do something, March Forth is exactly what my GSD/DBBB wife did.  

Tomorrow we will be better than today.  God Bless!  

It was 12:47am on March 5th.  I had survived the longest day of my life.