Friday, August 26, 2016

Life and Death- a small novel

This has been a life and death sort of week... in a literal sense.

I learned this,  when you come back from the dead, your baggage is a little tighter than when you left, the souvenirs you picked up from here to there and back again are heavy!  There is scarcely enough room to hold it all.

I suppose you are dying to hear what happened...

This week, we had our appointments in Salt Lake at Huntsman Cancer Hospital so the kids could have their check up with the Oncologist.  It was Shelbie's 3 month check up and the boys first time meeting our new doc so there was much to get established.

Spencer also had his appointment with the Faint and Fall clinic and a scheduled Tilt Table test in an effort to determine why he spends almost every day feeling like he is going to pass out, and some days, he does pass out. The episodes have become more frequent so it is a little disheartening.

As is customary lately, I felt very unprepared for the appointments and it didn't hit me until we were checking in that once again, our appointments were overlapping and I would not be able to be with all the kids.  Luckily, my Wasband was able to make it down so that helped.  After a lengthy and somewhat emotional discussion of where I should be, I determined that I would go with Spencer to the Cardiology clinic at the University of Utah and leave Shelbie, Sam and the Wasband to manage things in Oncology clinic.

I left a few brief notes with them of things I needed answers to and concerns I had and then hoped they would be able to speak for themselves and manage their own health to a certain degree...which, they were not happy about.  Spencer's oncology appointment wasn't until the early afternoon so if I needed to catch up on the other two, I figured I would include in Spencer's exam time.   I feel pretty secure in what is happening to their marrow but the heart is all new territory for me so I didn't want to miss details of that.

Huntsman's was kind to give us a ride down to the University Hospital. We checked in and found to my horror that they had scheduled the Tilt Table test for 12:30.  It was a 2 hour test and Spencer had to be back at Huntsman for 1:00.  I was worried we wouldn't be able to get things switched around.  We headed to the exam room and the MA got started on Spencer's vitals and EKG.  His blood pressure was acting up as well as his heart rate.  I was a little surprised but anxious about getting that other test switched.  I asked the nurse and she said we could do it at 2:30.  The problem with that was that Spencer had been fasting because you can't eat before the test.  To make him fast until dinner, when the test was over didn't seem fair.  I sat and simmered in that thought for a minute and then I just said, "Do you think we could just do it now?"

It worked...the Doctor was willing to move his schedule to accommodate ours!  I felt like this was divine intervention.  It seemed unreal that the room was available and they were able to get staff called in to help with the test!

At 11:00 am, the test started.  They strapped Spencer to a table so that his muscles were immobilized.  They started an IV and hooked him up to several wires and blood pressure cuffs on his arm and fingers.  For 15 minutes, he had to stand at a 60 degree angle and report any strange feelings or side effects he had.  The doctor and a nurse each sat at a monitor watching his heart and blood pressure.  By immobilizing the muscles, they can get a better picture of how the heart is handling blood flow.  The muscles help in getting blood from one end of your body to the next.  They were trying to determine if Spencer is having electrical issues in his heart or if it is an autonomic nervous system problem where his brain isn't communicating with the heart properly.

After 15 minutes, they give you a nitroglycerin tablet and then monitor that for 35 minutes.  The nitroglycerin relaxes the blood vessels.  This way they can determine issues with the pressure and how easy it is for the heart to pump the blood from the lower extremities to the brain.

They went over worst case scenarios, the worst being that Spencer would pass out.  I was sitting in a chair in the corner of the room, at the foot of the table.  I asked if I could stay or if they wanted me to leave.  They said they prefer if parents didn't stay because if he were to pass out, it freaks parents out.  I kind of laughed and said, "Well, that's why we are here, he passes out so I've seen that plenty of times before but I will leave if you want me to."

They never asked me to leave.  I promised I would sit still and not make a sound or a move- so the test got started.

It didn't take long for Spencer to start feeling ill effects from being upright.  He reported each thing he was feeling almost at the exact moment the monitors picked up on it.  What surprised me is how in tune he was to his body.  He knew when it his heart was racing and when it was slowing down and even when it was irregular.  The nurse and doctor were pretty impressed as well.  They called him their perfect patient.



Things were happening on the monitor and the nurse saw something and with huge eyes, turned to the doctor and whispered- "Did you see that?" and pointed to a rhythm on the monitor.  Towards the 15 minute mark, Spencer wasn't feeling well.  His hands and feet were really cold, he had pressure in his head and big headache building behind his ears.  They didn't seem concerned and gave him the nitroglycerin tablet to dissolve under his tongue.  It wasn't even 2 minutes later, Spencer said, "I'm going to throw up."  He didn't sound panicked or scared just matter of fact.

And then...my world stopped.  His world stopped.  His heart completely stopped.  The monitors were screaming out alarms,  all the rhythms were flat lined across the screen. But at the same time that Spencer said he felt sick, the nurse began to get anxious and he stood up as he looked at the monitor and said in a bit of a panic to the doctor, "Are we done?  Do you need to see anymore?"  He was speaking quickly and nervously.  It was at the end of the sentence that Spencer's heart stopped.

His eyes rolled back in his head and his head fell to the side.  His fingers twisted in strange ways and his body jerked and then he was still and lifeless.  I knew he was dead. I watched the flat lines on the monitor.  The doctors had jumped faster than I had seen anyone jump before.  They hit a switch and bed fell down with his head lower than his feet.

The doctor put his head down to Spencer's mouth to feel for breathing and see if his chest was rising and falling.  He rubbed his chest and said, "Spencer, c'mon buddy, come back!  Come back!"  and then he began thumping on his carotid artery and rubbing his chest really hard.  "Spencer, come back!  You can do this!"  The nurse was tangled up in all the wires and was trying to get to the defibrillator and IV meds to shock his heart back to life.  Spencer's eyes never closed, but you couldn't see the color of his eyes as they were still rolled back in the sockets.

As unexpectedly as it happened, Spencer gasped for air.  The doctor leaned down close to his face and said, "Son, we lost you! It's going to be okay.  Your heart stopped and we just got it going again.  You are going to be okay alright?"

Spencer weakly said, "I'm a quitter at heart."  We all sort of laughed nervously because it seemed so out of place for him to say that. It took a bit for Spencer to become oriented again.  Obviously, that was never suppose to happen.  It has never happened to them in the past.  It caught them by surprise as well.  His heart didn't even slow down before it quit...It just stopped. It went from 80, 40, dead.  No warning.

When Spencer was stable, they went back through the monitors to determine how long he was gone.  55 seconds he was without life.  Spencer said he felt like he was burning up just before it happened.

I never moved a muscle when it happened.  I didn't flinch, I didn't cry.  I didn't speak a single word.  The doctor was pretty surprised that I had enough control do to nothing as I watched my son lay dead.   In my head- it was a different story. A mess. A million thoughts criss crossed from one side of my brain to the other, some lapping others.

  • He's gone! Spencer is gone! How can this happen? This is the moment I have always imagined in my head to be the worst moment of my life and here it is!  He's never coming back.  This is how it ends.  I wondered how it would end.  It's not suppose to end here!  Not like this!
  • His life flashed before my eyes...every joke he ever told I think I remembered in that moment.
  • I have no regrets. I love him so much.  I think he knew I loved him. 
  • I felt terror but I felt calm and peaceful.
  • my own heart slowed down and then it raced. 
  • I wanted to run to him and kiss him before he got too far on the journey to Heaven. Before I would have to yell to him in the distance that was separating us...or maybe he would stay close for a minute so I could say goodbye quietly. 
  • How will I tell his dad, Shelbie, Sam.
  • I kept telling myself-they have things to bring him back.  They can bring him back.
  • God...can he come back?  Please, can I have him back?
It was crazy how many disconnected, bi-polar thoughts one can have in 55 seconds.  It was astounding how you can feel terror and peace at the very same moment.  I could feel we were surrounded by Heavenly Spirits.  That room was filled with spirits. 

Spencer was back to himself after a bit.  This was a monumental moment but we were both so disoriented. They just let him go once he was stable!  I kept thinking...how is it we are walking out of here?  My son just died!  I wanted to scream.  We passed people in the hall and they looked at us like it was just another day!  We looked normal.  We looked happy to them.  Spencer was even making jokes about dying and death and new beginnings, new birthdays...Factory resets on his heart!  

I wanted to yell in their smug faces...It's not what you think!!!  He just died!!  Don't you see, we are traumatized!  I just lost my son and we are walking out of the hospital...no monitors, no pills to ensure it won't happen again...nothing.  He could drop dead right now!!!  Why can't anyone see this?

I was getting angry and sad and scared and nothing seemed to make sense.  Why were we acting so non-nonchalant?  We actually had to rush to get back to Huntsman.  It was 12:50.  We met the others at the cafeteria.  We quickly said- "Well, Spencer's heart stopped for 55 seconds.  It was scary."  I wasn't thinking clearly.  I probably should have phrased things differently but why beat around the bush?  Shelbie completely melted down.  I did nothing to console her.  And here we are having a moment, crying outside the cafeteria on the top floor of the hospital and it's the lunch hour rush and we are crying and laughing and nothing makes sense and no one stops to notice us or ask if we were okay and still...I"m so disconnected from reality. 

I don't know how we made it through oncology but we did.  Somehow, I managed to switch gears and have a somewhat intelligent conversation with the doctor and the jokes about dying continued and it was the worst day of my life.   

We got home late Wednesday night and at 1:00am the trauma of the day finally caught up to us and it wasn't funny anymore and we sort of went into shock mode.  Yesterday was even harder and Spencer is not okay.  

I wish he had been in a horrific, metal twisting, high impact car crash with parts and pieces strewn about miles of highway. With one poetic shoe laying on the hot asphalt, 200 yards from his dead body. And traffic would be backed up for as many miles as the eye could see; that life for everyone would have stopped too.  And they would drive by and see the aftermath and they would be moved by something too.  And their life would have changed and then they would see him rise from the jagged edges of a torn up car and see a miracle and feel overwhelmed and share in the terror and mercy and the miracles. And all this because my son's heart stopped.  And there would be pictures to post and share and we could say...Spencer died here...but he came back!  And there would be something tangible to mark the moment, the event.  

Instead...it was just like this scenario in my head, except no one else noticed the horrible incident.  It was as if they drove on by, never missing a beat, too distracted to see the impact of the crash that happened so quietly and unexpectedly, in one dimly lit corner of a little room at a University hospital, to an exhausted mother who never left the chair upon which I sat, who can't even see how to possibly keep going.  

And the sad part is...I went through this with Spencer.  I witnessed it for him and will hold this moment with him, but I will never, ever know what he is feeling.  I will never know the trauma, the fear, the worry...the way he will be forever changed.  Together but alone.  Isn't this how life is?  I wish it wasn't this way.  I wish I could feel what Spencer is feeling.  I will never know what this moment was like for him.  That thought alone, makes me feel such sadness. 





Photobucket

4 comments:

  1. Wow! What a traumatic experience to go through. I'm so glad Spencer is ok. We sure love you guys. Don't go and do any more of that tilt testing stuff. Not good. I feel bad I was texting you about a mirror. 😩 Not a very important matter that's for sure.

    ReplyDelete
  2. Oh wow! Scary for Mom. Yes he was the one going through it but you were the one who had to just sit and wait. I always feel for the onlooker. Look as days after that as bonus days. He died and God has given him bonus days.

    ReplyDelete
  3. This comment has been removed by the author.

    ReplyDelete
  4. I can't even. I actually had to skip down to the end of this so that I could comment before I forgot what I felt as I was reading your words. As I started reading the part of all the thoughts that were going through your head, my eyes begin to get wet as I read the third one. At that moment, in the other room, my daughter started playing the hymn Come unto Jesus. In my head, I heard the words "come unto Jesus ye heavy laden..." After, she switched to Be Still My Soul. "Be still my soul; the Lord is on thy side..."

    How crazy and... I have no adjectives. I am glad the Lord is with you.

    ReplyDelete