AFTERSHOCKS

it has been just over a week since parker's picc surgery. 2 weeks since the whole nightmare of the PICC fiasco began
and
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
and
screaming
and 
brave
and 
enduring


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)
and
well, we needed the distraction


it was a struggle
but
we made it
it was nice
had some really good laughs with some really amazing and caring people
and
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
and
he was delirious and seeing things
and
on that went until the wee hours of the morning


it took 4 hours;
a shot of morphine
and
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
but
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
but
aftershocks keep rumbling beneath our trembling feet
catching us unaware
and
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
and
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.
but 
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
and
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
and
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
and
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
and
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
and
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
and
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
then
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
but
if i'm not 
then i'm either still falling
or
i've hit the bottom and i'm too broken to feel it


or
maybe
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
and
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
but
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.
quivering
quaking
shaking
heaving
trembling
hollow
cracked
broken


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!