Rick Charlie

When they are Dying and there’s not a Damn thing you can do.

Dying

My phone was dying

FUUUUUUUCK!  Four years ago today, this was the constant expletive running through my head.  It is March 1st, 2013 at 4:20 PM and I am sitting in the vinyl rocking chair next to my daughter’s bed at Children’s hospital – and my phone is dying.  I don’t have a spare battery or a charger for my phone.  It’s been a chaotic day to say the least, and I NEED my phone!  June is NOT well at all, and I NEED to keep in contact with too many people right now!  A phone charger, A PHONE CHARGER!  My kingdom for a phone charger!!!

Happy Birthday!

That might seem a tad overly dramatic, but considering what was happening, it was just par for the course.  June was admitted back into the hospital the night before.  Today was her 12th birthday.  Her flippin birthday and she has to be in the hospital!  It’s been 7 months on the transplant list, and over half of them were spent living in the hospital.  I was beyond livid!  We had worked so hard to finally get her back home, and now this.  I TOLD them that over doing the diuretics would screw her up, but did they listen??? NOOOOOOOO!!!  Now we have to start ALL over and get her body back in balance again!

June had a really good attitude about it however.  The night before she said, “As soon as I can get back out of bed, I’m going to spend my birthday giving away all the presents people give me, to the children in the hospital that are worse off than me.”  {Insert prideful parental tears here}  😭

Medically Speaking

This was going to be a short stay in this time.  June was very uncomfortable, exhausted, yet restless.  This was a sign to the Dr.s that she needed a unit of blood.  “That should do the trick.”  Everyone was confident that this would be the cure, and after a couple hours of rest, we would be on our way.

Only, it didn’t work.  She got worse.  AAAH, Bi-carb infusion, that will fix it!  Nope.  And now, June was really anxious.  She was completely incoherent.  The word making and putting together was not happening for her.  The Hepatic encephalopathy was out of control.  This was bad.  She was restless, fidgety, and could not stay asleep for more than 20 min. at a time.  Walking without assistance was impossible.  There was ZERO interest in the cornucopia of presents, cards, balloons, cake and flowers that were now filling the room.  She JUST WANTED TO SLEEP!!!!  And she couldn’t.

NOT Good!

Okay, how about a dose of albumin.  Nothing was working.  The Doctors wanted to give more time to all the treatments.  Then, a new symptom showed up – she could not regulate her breathing.  This was bad.  Like really bad!  Have you ever been around an asthmatic that was having an attack, and you yourself started to lose your breath?  Yeah, that’s how bad it was. I felt helpless.  No one seemed to be listening.  Not her mother, not the doctors, no one.  “Oh, she just needs cheering up.  I’m bringing the whole family and we are going to have a BIG birthday celebration when we get there!”  This was the response I got from mom.

Every nodule in my being wanted to just completely freak out, but I had learned through all this that calm, cool and strong was the way to go.  I needed that, but more than anyone, JUNE NEEDED that.  I fought the freak out demon, and with my phone at 10% and June actually resting a bit, I went out on a quest to find someone who would listen, and maybe DO something.

I didn’t get very far.

Just outside the door, June’s day nurse was sitting at the station crying.  She KNEW June really well.  She had been her nurse more days than not.  Nurses aren’t supposed to cry, at least not in such a publically accessible area as this.  I had NEVER seen any of them be anything but a pillar of strength for us, and for June.  At this moment, Miss Jen’s strength was all gone.  She had been there 13.5 hours, and was an hour and a half past her shift.  The night nurse had come on already, but Miss Jen had not left.  I went over by her, she had not noticed me walk out (also highly unusual), and she tried to quickly compose herself and stand up.  She tried to hide it, but there was no way she could.  The emotions bucket was overflowing, and there wasn’t anyone at the control gate.

I walked over to her and put my arm on her shoulder guiding her back down into her chair.  I sat across from her and said, “what’s going on?”  The night nurse walked passed us and went into June’s room for the first time that evening.  “I don’t know.  I don’t know.” Miss Jen said through renewed tears.  “What? what don’t you know?”  “I don’t know what to do.  She’s bad Rick, really bad.  No one seems to get that.”  More big fat tears began to form at the base of her eyes.

I found myself in an extraordinarily odd position

My own fear and helplessness about the situation melted away, and I felt the urge to comfort the one who was always a comfort for us.  My inner therapist kicked in, and I asked, “What do you THINK you should do?”  Just then, the night nurse Rachel burst out of June’s room.  “What the hell is going on?”

Miss Jen started crying more.  “I don’t know! I said she needs an ICU consult, but the doctor doesn’t think so, and they are really busy down there right now.”  Rachel, who was always the no nonsense type, and one to always bend the rules if she really thought it was warranted chimed in, “Fuck that!  I’m going down to ICU and getting someone, come on!”

Back in the room

The two of them left down the hall, Rachel leading the way, almost dragging Miss Jen with her.  I figured I should go back to June and see how she was.  Thank the lord, she was sleeping.  Still breathing erratically, tossing and turning, but asleep.  I sat back down in the rocker.  BUZZ BUZZ!  My phone now at 3% I got a text from the ex.  “We’re here and on our way up!”  “June is sleeping,” was my reply.

I looked at June.  Her eyes were moving back and forth crazy fast.  It was like she was watching a pro ping pong tournament in fast motion.  Though she was “asleep” it was most certainly not restful.  For the first time in 7 months, I was actually afraid for her.  I had no idea what to do, so I did the only thing I could.  I got up, kissed her on her forehead and whispered in her ear, I love you booboos.  At that moment, June’s eyes opened.  She looked at me and her eyes met mine.  There was no fear in her eyes at all; some confusion, but no fear.  Without any words, any gestures or movement, her eyes said to me, “Thank you daddy.”

And then the Cavalry

Before we had a chance to even touch that moment, the door to her room flew open.  The army that was her mother’s side of the family rushed in.  Carrying more balloons, flowers, cakes, presents and cards, they spread throughout the room and began hanging birthday decorations.  Mom rushed over to the bed and said, “It’s okay baby, mom is here now – Happy Birthday!”  June looked at her all confused.  I’m not sure at that point she even remembered it was her birthday.

I had been texting mom all day, keeping her updated.  I looked at her and said, “We need to talk.”  I took her aside and told her what was going on.  All I got back was a dumbfounded look and, “well, we are here now, and everything is going to be just fine.”  She wasn’t listening at all, and I did not have the patience.  It was evident that I was “relieved of duty”.  Time for me to take off my hospital hat, and put on my father to my son hat and go home.  It wasn’t worth the hassle.  She would figure it all out on her own eventually.  So, I told her to keep me posted, and me and Ty walked out the door as the army of bees continued their hurried decorating.

What was happening

So caught up in how to get June’s fluids all balanced out, what nobody realized at the time was that June was dying.  That is what was going on.  That day, on her birthday, the last living cell in her liver curled up, turned out the lights, and died.  The rest of her body was freaking out, trying to make up for it.  This is why her kidneys were acting up.  They now had to try and do the liver’s job too, and they were already tasked to their very limit.  Not a single one of us was willing to consider that’s what was going on.  It was her birthday for God’s sake!  She would spend the rest of it being transferred to the ICU, and being hooked up to life support.  There was nothing left anyone could do.  It wasn’t a good birthday.

Ty and I got home about a half hour later.  I looked at my phone, 1% left.  I plugged it in, just made it.

Peace,

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