September 23, 2011


it has been just over a week since parker's picc surgery. 2 weeks since the whole nightmare of the PICC fiasco began
i am broken

a procedure that is generally straightforward and should only take 30-45 minutes took over 2 hours

my kid lay on that operating table for over 2 hours...

in pain

for the most part, that pretty much sums up everyday for parker...

it is all just too much.
is it not enough that his young life has already been robbed of so much?
is it not enough that he has been through more unbearable crap than most folks will experience in a lifetime?
is it not enough that he has been dismissed and tossed aside by the medical community in his own country?
is it not enough to be denied access to needed medical intervention in your own country? isn't that something that as a canadian he should be rightfully entitled too?
is it not enough that he had to go thru a PICC surgery not once but twice?

that was bad and horrible enough so why then did a 30 minute procedure morph into a 2 and half hour traumatic ordeal? why did it have to be so complicated? so painful? such a struggle? such a fight? 
why must he suffer and suffer and suffer?  

when is enough enough?
our life is a nightmare that doesn't end

i sit here in the aftermath, among the rubble of my life, dazedly staring at nothing, tentatively feeling for stable ground with which to gain a footing, desperate for stability, struggling to find any semblance of strength or muster the will to move forward

we've tried
last saturday, we went to a bbq for graham's work
it was a struggle to get there but we really wanted to go (we actually like the folks graham works with)
well, we needed the distraction

it was a struggle
we made it
it was nice
had some really good laughs with some really amazing and caring people
then, as we were about to leave, parker hit his wall
eyes glazed over in that all too familiar look he gets when his mind and body are about to go south on him
and they did
by the time we made the short 5 minute drive home, he was screaming and moaning and writhing in pain
he was delirious and seeing things
on that went until the wee hours of the morning

it took 4 hours;
a shot of morphine
8 injections of procaine into his knees
to take just the edge off his pain

that is our grim reality
the aftershock of doing something 'normal' for a few hours
we're trying to move forward
keep going
shake off the aftermath
it's not going so well

i've cried a lot
every day
multiple times a day
graham too. and he never cries.
but we tell ourselves
at least we can shake off the trauma of the PICC ordeal;
surgery is done
picc's in in place
meds can keep flowing
gotta keep moving forward
we still have a battle to fight
aftershocks keep rumbling beneath our trembling feet
catching us unaware
upending the fragility of the delicate balance we're struggling so hard to regain.

multiple aftershocks
too numerous to count

new PICC is different than old PICC
different then the one that i have

the surgeon tried his darndest to put in the type of PICC that we wanted (same as mine) but because of all the complications with parker's veins, he was unable to use that type. it's no one's 'fault'. it's just the way that it is.
the way that it is, is the very thing that i didn't want.

new PICC is exactly what they use at BCCH.
i don't like that type of PICC 
in my opinion, there are bigger risk factors for blood clots and infections with those type of PICCS
they have to be flushed with heparin
which is a prescription drug
which would mean one more thing to add to parker's regimen and add to our list of USA prescribed medications

just didn't want to deal with any of that
so that was the one thing that helped me cope with BCCH's denial of surgery

i kept telling myself, at least, he'll get the type of PICC i prefer

that did not happen
he came home with the very same type of PICC he'd have gotten if his surgery and been done here in BC

it's been a very, very steep learning curve to learn the mechanics of this PICC
a huge additional stress we didn't anticipate having to deal with

and the heparin?
a mad dash, last minute panic and scramble the day of the surgery to track some down
(thank you to a lyme friend who provided us with some of his own heparin supply to get us through the past week)

we're still trying to source out the heparin
it is a prescription drug
it's available in canada - but not to us
one more thing we having to scramble to get prescribed through the USA
another unanticipated aftershock

new picc line appeared to be healing nicely
there was minimal bruising and swelling - which was amazing and evidence of really how gentle and careful the surgeon had been....of course, it didn't feel that way to parker...

his first dressing change was terribly painful but the line looked good
we breathed a sigh of relief....and then as fast as that sigh was expelled, it was just as quickly retracted...
second dressing change didn't go so well...
the line started to push out of the incision site
this is the same problem that in effect caused the loss of the last one 

heightened sensitivity of the risk of the possibility of losing this one breathes fire through my belly
intense anxiety resides in our gut over it

3rd night post surgery
last of parker's meds for the night had been successfully infused
he'd gone to bed

graham and i collapsed on the couch
survived another day
we dared to consider that
maybe, just maybe, tomorrow will be okay
footsteps on the stairs
parker shuffles in
"mom, dad, there's blood in my line"

graham and i quietly exchange furtive looks of stress and worry and anxiety and grief, then turn to face our son, strained smiles, calm demeanor masking the fear pulsing through our veins, and we whisper, 

"it's okay. everything is going to be okay."

i lie.
i don't know that i believe that anymore.
our life is a nightmare that doesn't end
safety? stability? security?
it's fallen through that crevice in my life that cracked open when my world started quaking.

i suspect i've fallen into that deeply crevassed abyss as well
but wait, i'm still here
so maybe not
if i'm not 
then i'm either still falling
i've hit the bottom and i'm too broken to feel it

i'm teetering on the edge
about to fall

stress takes a tremendous toll on a healthy body
add to the mix
a bacterial infection that attacks both brain and body
that's a lethal combo
the last several weeks of stress have had a cataclysmic impact on my already ridiculously unstable and fragile central nervous system

my physical challenges have been monumental...
my emotions raw,
my psyche frail, 

i am not coping

tears come daily
multiple times a day
grief sobbing
the kind that comes out of no where, rocks me to my core, violently shakes any semblance of foundation i felt i had left beneath me

i'm stronger than i thought
i've endured more than i ever thought i could
i can't do it anymore

our life is a nightmare that doesn't end. my pleas for mercy echo through the night. my prayers are but groans of grief that hit the ceiling and don't seem to be heard. that's gloomy and dark and full of despair. but that's where i am. that pit. in that crevice. in that crack in ground.

strength is ravaged. endurance run dry. courage gone.

psalm 22:1-19

1 My God, my God, why have you abandoned me?
      Why are you so far away when I groan for help?
 2 Every day I call to you, my God, but you do not answer.
      Every night you hear my voice, but I find no relief.
 3 Yet you are holy,
      enthroned on the praises of Israel.
 4 Our ancestors trusted in you,
      and you rescued them.
 5 They cried out to you and were saved.
      They trusted in you and were never disgraced.

 6 But I am a worm and not a man.
      I am scorned and despised by all!
 7 Everyone who sees me mocks me.
      They sneer and shake their heads, saying,
 8 “Is this the one who relies on the Lord?
      Then let the Lord save him!
   If the Lord loves him so much,
      let the Lord rescue him!”

 9 Yet you brought me safely from my mother’s womb
      and led me to trust you at my mother’s breast.
 10 I was thrust into your arms at my birth.
      You have been my God from the moment I was born.

 11 Do not stay so far from me,
      for trouble is near,
      and no one else can help me.
 12 My enemies surround me like a herd of bulls;
      fierce bulls of Bashan have hemmed me in!
 13 Like lions they open their jaws against me,
      roaring and tearing into their prey.
 14 My life is poured out like water,
      and all my bones are out of joint.
   My heart is like wax,
      melting within me.
 15 My strength has dried up like sunbaked clay.
      My tongue sticks to the roof of my mouth.
      You have laid me in the dust and left me for dead.
 16 My enemies surround me like a pack of dogs;
      an evil gang closes in on me.
      They have pierced my hands and feet.
 17 I can count all my bones.
      My enemies stare at me and gloat.
 18 They divide my garments among themselves
      and throw dice[a] for my clothing.

 19 O Lord, do not stay far away!
      You are my strength; come quickly to my aid!

1 comment:

Shadow said...

I am so sorry Parker is going through this. I know how hard it is as a mother to watch your child suffer. I am sending you positive thoughts and love. I wrote a small line about parker on my blog. I hope you don't mind, but if you do, please let me know and I'll remove it immediately.
Love and light,