Day 19
Oct 29 - 3am
I think I posted and responded to texts from 3am to 5 am ish,
then fell asleep,
Julie and I are on our own this night... And I slept really well ( unusually well)
6:55am my phone rings .. Boom out of a dead sleep,
Its denise... HI Tim ( in a voice that reminds you of carol bernett)
everything is ok, hilton is fine, sigh,
can you meet Doctor perin in 30 minutes ...
I respond with a;
Yes no problem....
Boom I'm up out of bed,
Heart pounding, in the coffee line at tim Hortons.. The girls behind the counter ask me; "how is your son?"..... I say: " he is good"....sigh
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In my head, I'm spinning and thinking so loud at the timmys counter, that I can't speak for a second:
"What the fuck do you say to strangers??.... WHAT THE FUCK DO YOU SAY.... Oh, my SON, HE IS FUCKED!?!? , and I shouldn't be here.. and this is not my life... What the fuck do you care??... Walk a mile in my shoes bitch.. why even ask??... If you don't really care,
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He is good I reply, a second time... Sigh....
_
my head was spinning waiting for my coffee,
a toonie on the counter, clock ticking slowly...
.... And boom.. back to reality- coffee in hand off to the elevator...
I have ridden this elevator too many times to the 9th floor....
Scared, tired and I have not shaved in 19 days.
2 eyes like pissholes in the snow...
I pick up the phone and say its hiltons dad...
... Vikki a doctor walks by without hesitation hold the door open and say your like a honourary staff member ... come in.... The staff christmas party is dec 10 .... I said; thanks..
With my eyes down..
And by chance right at the door was a short stocky older gentleman.
Who stuck out his hand...and said;" I'm dr. Parin you must be hiltons father....good morning , follow me.
Off we go to the fancy waiting room, no one is in it at 7:25 am on the 19 day of my sons journey..
Dr.Parin has a dry bed side manner
almost a "god complex"... But fuck he is entitled....
He tells me the same story.... As Dr. kusmano did the night before... With less charm and warmth...
Its 7:52am he stands, like our conversations over,
because he is in control of the conversation, not me...
He, like the others said
" if you stop medical intervention hilton could choose to live and breath on his own, his heart is strong,... And if he does not die we can't , we won't perform euthanasia ...I'm thinking : Fuck can you all shut up...!!!!! SHUT UP..like I want you to kill him everyone just stop saying that shit...
I told dr. Parin that I had more information in the last 24 hour and as my neurologist I consider you negligent in the distribution of information... This is the first time we have spoken in 19 days of treatment and your my kids doctor????
We should have had all this information 10 days ago... (He said nothing, what in hell was he to say... Sorry we didn't touch base earlier????)
We stood.....
While shaking his hand I ask can I see my son? and through the back door of the ICU..we went, dr. Parin went one way, and left me standing next to my beautiful little boy...
With a kiss on hiltons head I'm off...
I texted penny and kellie and ask when they would be here.. Both said 11am
They could feel my strength...
I went to denise and asked to see Dr. avery ( head trauma guy.) again at 11am..
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8:55am
As I left the ICU I walk slowly to our condo...
Tears running down my face...
Begging god to help me, find a path...
As I got to the condo... I sat on julies futon and watched TV for 10 minutes
I needed to shower
And to shave, to shave off the play off beard...
Clean myself up ,
dress in a nice shirt...
Get ready... To fight for my son...because I felt that more and more people inside st. Mikes think I'm giving up on hilton
when the truth is I'm fighting now harder then I ever have!!!!!!
He needs to do this journey on his own... And everyone around him need to stop poking there nose is..I m sick of having people turn it on me...moral bullshit,
Its hilton, I just have to give him the tools to chose...
Dr. Kusmano. Was right when he said... When we / if we" turn of life supportoff "its is a fight or flight!!!???"
. Instinct, its the very nature for the human spririt, quiet or fight
what hilton does is up to hilton....
Standing in the shower I could barely breath...
Julie makes me breakfast and as I eat in silence..
A single tear hits the glass table and I turn my head to julie and ask with a dull tone... Would want to live that way?
She shook her head and said quietly... "no"...
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10:45am: still day 19 ( long day at its not 11am yet)
I text penny and kellie make sure everyone is on track ... Everyone ready to meet dr. Avery head of trauma and the ICU...
Replies from both ;yep... 11am 9th floor
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The three of use had discussed this moment 50 time in the last 9 days...
No one had actual said 100 % what there choice was... Or was not..
Hilton lived life hard..
He work hard
He played hard... Really Cool kid,
did lots of stuff...
Jump off of a mountain with a para-sail on ...
Has done 70+ kPHon a board
Worked from 7:30am to 7pm and then was on call 5 days a week working 24 hours...on call,
and when ever he could.. With out a blink of an eye him and I still had dinner twice a week... We kinda made a shitty wing place off of bathurst our place for a beer and food.. And some shop gossip...
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11am.
9th flloor ICU,
Penny kellie and I .... And ... Julie... went to the secured door and picked up the phone and when they answered,
"9 th floor ICU volunteer leo speaking"
I think that's what he said : I replied with a dull : "it hiltons father" ... And with out a -"let me see" - or - "I'll check with the nurse"..
He opened the door...
And there was Dr. avery...
He and I met eyes and I said... WHEN can we meet? He said give me 45 minutes to do rounds.... ,
I said: no problem I will see you at 11:50am
Hitting the handicap button , out I came to the hallway where all family waited in fear to enter this place.
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Collette our social work let's me know.. That the morality and ethic manager person has been contacted, ( yeah that's right some one over looks what you do with your family and has the right to stop what you want if they feel its not the right thing for them- that's fuck up eh)
Morality dude says everything is good, whew.. I was worried. Sarcasm
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With Penny kellie and I together I said: " our time is 11:50am , let's go to the 6th floor... And talk...
There in the " marketeria" we sat... And I ask them all are we doing the right thing sigh, without EYE contact they nodded..... (Sigh) they nodded....
We have had 12 formal meetings with doctor all of them emotional tsunami
And we never make it to a punch line,?!
half the time because we become emotional morons the other half because the doctors always say give more time and push us to wait , in our time of weakness they bully us to wait..or were we just selfish,
how could you not be , the selfish thing to do is not make decision and wait... Its easy in the ICU!
The ICU is so safe, and if every one is saying wait.... Fuck it why move forward, why face god when you can hang out with the SAFE ICU... Why go to the Ward, its so safe never to leave the ICU...
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11:35am
I ask PENNY, KELLIE and julie .... That when we enter the room, we don't need a shit show, we need to be strong ,
no nostalgic bullshit...
No tears
no stories...
And what ever I say nod... All business...
or Dr.Avery and the team will bullshit us to a "no" answer...
kellie and penny nodded( sigh)...
Julie just starred, like she is witnessing an accident.... Still in thought...
I'm not sure what she was thinking, I reach for her hand and its was sweaty...
Up we get go to the evavator back up to the 9th floor...again...
Buzz in to the ICU... And walk to the small meeting room with the coffee pot and fridge again....
At the end of the ICU
As we wait....
For 5 minutes,
F I V E of the longest fucking five minutes...
We entered the room Penny on one side Kellie on the other... Me at the head of the table..
Armed with courage.. Love, and passion for our son.... And there was shell shock julie sitting beside penny...
As Dr.Avery and collette our social worker entered so did Two or three others... And I looked puzzled... Avery see I'm not settled and say this is the charge nurs-- I cut him off...
And say : "No one else"
He contuinues.. Nurse and...
I cut him off... And say
"No one else!!!!!... I look at collette and she nods : and say : its your meeting...
I speak up ..and say
Thanks folks just avery and collette please and if Avery wants... We can have a meeting after..
Every one left...
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12:15pm day 19 still
Dr. Avery sits... I tell him with strength and courage,
That we are united in our belief that this is Hiltons fight...
He stop before I can finish.. And say: I know you have collected all the info you require....
And I cut him off...
We have agreed... We have agreed to stop medical intervent- avery cuts me off...again..
If we stop intubating your son he might live on for days and weeks!!!! we may have to move him to the ward bla bla bla...
I let him go for it , because at this stage I realize if I cut him off he just won't be able to finish his liability political correct speech..
When he was done.. And there was silence..
I look at penny then I looked at Kellie... then collette and then Avery..
And said:
We want to stop medical intervention..!!!!!!!!
And if hilton lives... The we live with him if he go to god, and falls a sleep that will be his choice...
Avery says:
he is strong and the chances he will just up and pass away are slim and do you understand that we can't stop feeding him and we can't stop giving him comfort care.. And we must make sure he is ok.. And not in pain..
we might be back in here in a week discussing rehab...
Are you sure this is what you want ..??? With adeafing stare...
Are you sure you want us to stop medical intervention and just perform comfort care..????
I look again at collette, Penny and Kellie....
And back at Avery...
And I say with strength
YES
I thought I was going to throw up, I turned white inside, my colour , I was sweating,
Dr. Avery says when? When do you want to do this???
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( In my head)
Holly fuck doctor stop, stop with the questions...
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Yes , right now , STOP MEDICAL intervention now... Right now, no waiting,
I stood up, the others followed,
Dr. AVERY Nathan look like he just lost a battle...
And said as we headed for the door.. I will make the arrangements immediately.
He left the room we followed...
I ask collette, how was I?, She look at me like that was a fucked up question, I on the other hand thought I was gonna hyper ventilate, and vomit on the floor.
Because I just demanded that this great team of health care professional at st. Michaels 9th floor ICU trauma ward to stop working on my son... What the fuck was I thinking...
My son is a strong kid, as dr. Kusmano said.. Fight of flight... Hilton, you pick I will follow..
12 days earlier I played thumb wars, a simple kids game, three times I played thumb wars as he look at me for the last time as my true son.. He never crys, no matter how I screamed at him he never cried, un less he did something really bad.. That day he new he made a huge mistake.. And he cried his last tear of sorrow to his dad.. He was gone that day..
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I leave the little room with penny and kellie, as we discussed who says good bye and who stays...
I ran to hiltons bed side,
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