6.01.2015

Grief and Fulfillment: Part TWO

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They say no one can prepare you for motherhood.  This I know is true.  I wasn't only naive but terrified.  My baby wasn't healthy.  He was dying and there was nothing I could do.  The doctor's didn't know what to do.  My two and a half year old was scared and hungry and confused.  I didn't know how to help him.  I only knew to show him where the food was and feed him several times a day, a little at a time. 

Ice cream sandwiches quickly became a favorite treat!
Parenthood came crashing down leaving no room for celebration or joy.  We spent our first morning home in our pediatricians office desperate for answers.  In a matter of hours we were in the ER of the children's hospital holding a little life that barely existed.   His dark skin was pale white and his breath was shallow.  Not knowing what was wrong with him made it difficult for doctors to know what to do or how to help him.  Mason Fernando.  Our son was sick.  We were helpless and near hopeless.  

As we waited on blood products, I tried desperately to get Mason to take a bottle not knowing he had thrush.
Our new toddler was left with both our parents.   We marveled at how brave he was, how his dark eyes connected with ours.  He must have said, "Hola" to every person that walked by.  He was spoiled with whatever he wanted from the vending machine, cafeteria and gift shop.  I remember my dad giving me updates on how he was doing while waiting for us.  Parker Tereso. Our son was overwhelmed with his new surroundings. We were waiting to bond with him.  

Parker played with toys brought by friends and family hoping to make hospital life as normal as possible.
After the absolute longest night of my life, we were finally admitted to a room and Mason was hooked up to a tower of IV's that pumped life into his fragile body.  That room became our home for the next several months.  When Mason had a "healthy CBC" we were allowed to go home with him for hours or nights at a time and assume the role of a couple with their two children playing family.  But our reality consisted of a child with awful night terrors and an infant who's life wavered.  After eight weeks of tests, doctor's finally diagnosed Mason with Wiskott-Aldrich Syndrome.  In a nut shell it's a genetic disorder that attacks and destroys platelets and compromises the immune system.  Mason was bleeding internally and externally all the time.  I'll never forget the time he cried and his tears were blood.  I am still chilled to the bone just thinking about it.  A nose bleed, if not stopped, would cause him to bleed to death.  He had eczema and would often need a platelet transfusion to stop the bleeding from scratching his skin.  Any germ out there, even the slightest cold, could take his life.  

Mason's IV tree of life
Instead of playdates, bubble baths, and birthday parties we were confined to a hospital room waiting for the only cure, a bone marrow transplant.  While Parker was taken care of by his grandparents, daily visits were spent just trying to get to know each other.  I was his third care taker but wanted to be his mom.  Could he trust me, love me, need me, want me?  I had no idea then how difficult our journey would be.  But it was and still is his tender face that reminds me of why he is ours.  We are to protect and nurture and most of all love him.  And we do.  

Priceless smile!
Mason's life continued to balance as we waited for a transplant match.  Several near death scares started to take a toll I'd never met before.  I was mentally, emotionally, and physically exhausted.  I was anxious and scared.  I was angry.  But I was thankful.  We had an amazing support system.  My mom spent every night at the hospital with me so Big Dog could resume any sort of normalcy with Parker at home.  Scott's parent's cared for Parker during the day so Big Dog could work a few hours before visiting our other "home" in the hospital.  My dad worked close by at the dental school and made routine visits, brought us breakfast, lunch and whatever else we needed from the outside world.  

Oh these brothers!  Still as close today as they were then.  Photo Credit: Shannon Ho Photography

Photo Credit: Shannon Ho Photography
Mason's first birthday... in the hospital.  Our Little Engine That Could!
  He was not impressed by the cupcake.

Little Parker adjusted to his new "home" and often napped in Mason's hospital room.
And then one day, while on a pass to be home, Mason fell  and hit his head on a toy block.  As usual a bump and bruise formed immediately.  He barely cried.  I regret to this day thinking hardly anything about it.  He was bruised and bumped and scabbed all over, all the time.   But after several hours Mason became listless.  His smile faded and his eyes started to roll back.  While trying to feed him, he started vomiting.  This bruise was worse than the others.  Something was wrong.  

I took this picture as we played in the playroom that day.   
I remember the CT scan and quietly being escorted back to our room.  It felt like years passed before the doctor finally came in to talk to us.  He said a few things about a brain hemorrhage and a mid-line shift.  He said they would monitor him and then left.  Shortly after, Mason's monitor would alarm, his breathing would stop, but no one was doing anything.  From previous experience I knew that slapping his back and sitting him up would help him regain consciousness.  I was terrified and yelled for the doctors but no one came.  I grabbed a student nurse and instructed her to find them and Code Blue the floor.  Finally a team of medical students and doctors filled the room.  A crash cart was wheeled in and hysteria set in.  The crash cart was unequipped for saving a life so an epi pen was ordered stat from the pharmacy and a brown paper lunch sack was used to "bag" him.  The room spun and I knew.  I knew that this was it.  But I wasn't giving up.  Mason was rushed to PICU where every cord and needle stuck to him.  A neurosurgeon was needed but had transferred to another hospital the day before.  A helicopter was ordered and we were told his only hope was to be meda-flighted to the nearest hospital with a pediatric neurosurgeon.

These 'lil feet.  My weakest link!
I remember holding on to Big Dog saying that I wasn't ready to give him up yet.  Not yet.  I wasn't ready.  I needed more time with him.  I needed to hold him and twist my fingers around his curls.  I needed to hear his giggle and pat his back.  I called a dear friend and asked her to hit her knees and pray, beg, plead to God not to take him.  She did.  I was finally able to say good-bye to him before they put him on the helicopter.  I sang his favorite song, the ABC song, and he opened his eyes and smiled.  At that very moment I knew he would continue to fight.  

Despite my begging and demanding, I wasn't allowed to go with Mason (I caused quite a scene).  My mom stayed with him until the helicopter was safely in the sky and headed south.  We had to drive.  We drove to Ft. Worth, TX to Cook Children's.  I'm pretty sure we broke the speed barrier.  I kept looking out the window searching the big blue Texas sky for the helicopter that held my sweet baby boy.  We had to stop for gas and an ambulance pulled in right next to us to fuel up.  I begged the driver to drive us to Ft. Worth thinking he could get us there faster.  He politely told me no, that it was against regulations.  I'd lost all sense of reason.  Didn't he know I was a desperate and crazed mother wanting to meet her baby at the hospital?  We continued on and I called my best friend that lived close to the hospital.  I told her to, "get there, be there, hurry!"  I didn't want Mason to arrive without anyone who knew him to be there, to talk to the nurses, to tell them his story, to tell them not to let him go until I got there. And then the traffic hit.  I could see the roof of the hospital but it was miles away.  I tried to get out and run but Big Dog convinced me otherwise.  I would do anything to get to him, to hold him and kiss his sweet face.  

I'll never forget the long hallway to the PICU.  Beautiful photographs of children hung on the walls.  Their facial expressions radiated hope. I remember slowing from a run to a walk  when I saw a doctor standing outside a room.  He was an older man in slacks and a button up with a bow-tie.  His gray hair was combed neatly to the side and his hands folded softly in front of his waist.  And I'll take it to my grave that he had a glowing halo over his head.  I knew.  I knew that was the doctor that had seen Mason and that Mason was ok.  He said a lot of things, "he's critical, in a coma, we are doing everything we can...".  It didn't matter what he said because he was glowing and calm and confident.  Peace surrounded us as he spoke. 


I was taken to a room to be interviewed by a nurse about our experience at the previous hospital.  I began to tell Mason's story, his battle, his bravery, and our hope that he would be healed and live a healthy life with us.  Then we met with a team of PICU specialists that explained what they could and gave us confidence in knowing that he was in a good place and had a fighting chance.  Everything seemed to float over my head until they asked me to sit down and consider that if he woke up he would likely be a vegetable at worst or paralyzed with significant brain damage at best.  Most children with Wisckott Aldrich don't make it to their ninth birthday.  Most die from head injuries and bleeding out or a simple virus their body can't fight.  


Later that night we were taken to the Ronald McDonald House where Big Dog and Parker would sleep.  My mom and I stayed with Mason and for the first time since we brought him home from Guatemala, I slept.  I slept knowing that he was in good hands.  I knew we were where we were supposed to be.  A team of doctors kept an extra careful watch on him.  He was stable, safe, and genuinely cared for by a team of specialists that had yet to see his eyes and hear his laugh.  Mason later became known as the walking miracle.  He still had an incredible yet challenging journey ahead of him.  But he had an adoring big brother, a  fierce loving mom and dad, and people around the world praying for him.  Our journey took a sharp turn and the road  before us was long.  



We braced ourselves. 

2 comments:

  1. That's awesome, Carol! Patients as young as him don't get to teeter towards desolation and walk out from it with a full, albeit struggling, life. Kudos to all the pediatricians, doctors, medical professionals and staff who worked to bring him back from the brink. And kudos to your family for being the one to propel him on a more empathic level and just be there with him.

    Malachi Cates @ Indian Crest Peds

    ReplyDelete
    Replies
    1. Malachi,
      Thank you for reading! Mason is certainly a miracle that we get to witness with each day. He's an amazing child with so much love to offer. We are forever thankful for everyone who prayed and played a role in his recovery. We consider it a gift to be a part of his journey!

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