SIGN HERE, PLEASE!

PLEASE take a moment to go to the link at the bottome of this post and sign.


signatures are needed not just from all canadians that suffer with lyme disease BUT ALSO from FRIENDS and FAMILY of lymies.


Please sign this petition in support of treating this disease in our own country. the petition is urging the BC government to implement the recommendations of Dr Brian Shmidt's report.


 Dr. Brian Schmidt's report, among other things, urges the BC Government to:

- Develop accurate Lyme disease testing;

- Educate BC physicians to clinically diagnose Lyme disease;

- Provide long term antibiotics for Chronic Lyme disease;
- Provide physicians the freedom to treat Lyme patients on an individual basis without having to follow the Infectious Disease Society of America's restrictive 2-4 week course of antibiotics.


thank you


SIGN HERE, PLEASE!

UNTIL FURTHER NOTICE

i've had a sudden return of severe hyperacusis over the past several weeks. 


hyperacusis is a fancy medical term for sound sensitivity. wikipedia defines it as, 


"a health condition characterized by an over-sensitivity to certain frequency ranges of sound (a collapsed tolerance to normal environmental sound). A person with severe hyperacusis has difficulty tolerating everyday sounds, some of which may seem unpleasantly loud to that person but not to others."


really using the term "over-sensitivity" or "unpleasantly loud" sounds so, well, nominal in comparison to what it is really like to live with this phenom. we're not talking a little irritation one experiences when some kid in a restaurant throws a tantrum or chills that run up the spine from finger nails being dragged down a chalk board or the irritating sound of the drip-drip-drip of a leaky faucet. albeit those are certain to make nearly every one cringe.
rather, hyperacusis is a barbarically heightened sensitivity to normal every day sounds...and it elicits such profound reaction of the nervous system that it can be a virtually paralyzing symptom to live with.


paper crinkling
glassware tinkling
keys on a key chain
clanking cutlery
clickety clack of shoes on the sidewalk
the droning buzz of more than one person speaking at the same time


those sounds incite panic attacks, leave me in tears, or on the verge of hysterical rages, they make my heart race, pulse pound, head spin, send pin prick sensations hurtling down my extremities and leave me curled up in a fetal position, the ordinary and mundane incite a riot in my head and leave me feeling like i'm gonna-lose-my-freaking-mind-if-that-doesn't-stop-right-now...


but those sounds are the very vibrations to which life hums along. they are the common place, every day sort of gotta do to live sorta sounds which means i'm at odds with the world around me all the time. i live with earplugs in and in order to get thru the day, i must make frequent retreats to the quiet, dark prison of my bedroom... and that's on a day when my hyperacusis is relatively mild. on a bad day, i'm holed up in my room, blinds drawn, windows closed, ear plugs in, pillows cushioning ears, covers over head, and a fan on (white noise to drown out any other noise) but it has to be free standing fan - the fans in bathrooms? those drive me insane! 


it is a miserable way to live
it is miserable for my whole family to live with.


the cutlery thing has been by far the most intolerable. i do my best to get out of ear shot the minute any one needs anything to eat. which means i spend most supper times cringing and sweating in my bedroom.


last week, it got so bad, i literally thought i would lose my mind. graham was down stairs emptying the dishwasher. i, of course, had to be upstairs, at the opposite end of the house, in our bedroom with earplugs in, fan on, door shut, etc. etc. etc.
and
i could still hear the clinking of the plates and the clanging of the cutlery.
and
he was unloading the dishwasher as QUIETLY as humanly possible yet 
it doesn't matter
super sonic boom
he may as well have put a plate on my head and scraped a fork across it


that's how loud and shrill it sounded to me


i tried pushing thru, sweating it out, deep breathing
but 
it was just way too much
it's as if the utensils were doing the tango and my eardrum was the dance floor


finally i burst forth from the bedroom, wailing and hyperventilating and shrieking and shaking and pathetically pleading,


"stop. STOP. STOP. STOP."


hyperacusis.
the pinacle of hearing horror.


most women would be over the moon if their husband helped with the dishes.
and
here i am screaming, begging, pleading for mine to stop.
twisted world this is.


after that, it was decided, 
my sanity over rides responsible consumerism
and
my mental health edges out eco-consciousness
until further notice,
this house will be fine dining with royal chinet and plastic utensils

peace of mind comes at a price

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!

ENDURANCE

parker's picc is in.

he is in major pain but the surgery is done. for that we are grateful.

i spoke with the surgeon after surgery. yes, the picc is in place - but it was a very difficult placement because parker's veins are not in good shape. no one could have anticipated or known this prior to surgery. it just is what is. parker has a form of chronic thrombosis and vein stenosis...the surgeon had to re-route around many blockages... as result, there is much instability in the vein and there is certainly a heightened risk for this PICC to not last. 

my head is reeling. i'm still shaking.

just trying to process it all...it has been a horrible day for all of us to endure...there is much prayer needed for healing of the site and his veins...will update later - probably tomorrow.

thank you to everyone who sent messages of support today. i literally feel like i would have completely lost it without them. words cannot express how much it means to know that folks are walking alongside of us in thoughts and prayers. thank you.

PRAYER FOR FORBEARANCE

i planned on updating the blog today once parker's surgery was done...however, they are having much difficulty with the surgery and as such, i feel the need to just let folks know so that they can ramp up the prayer.


parker has been in surgery for over an hour now. the surgeon just came up to tell graham that they are having difficulty threading the new line thru his callatoral veins due to scarring from his previous picc.


parker is in pain...but bearing it all like a trooper.


i am falling apart. i was "okay" until i realized that he had been in surgery way longer than expected...than i knew it probably wasn't going well. it is very very hard to not be there. i only have sporadic contact with graham thru wifi at surgery clinic - 


please pray
for parker
for the surgeon
for the surgery to soon be successfully finished
and
for forbearance


this is so very difficult

RESTING EASIER

graham and parker have safely arrived in seattle and are in a hotel that is situated about a 10 minute drive from the the clinic where parker will have his PICC replacement surgery tomorrow.

phew! i'm glad they made it. graham said the drive was "unremarkable" and "uneventful" - thank you Lord! he also said the drive was quiet - parker slept pretty much the entire drive. that's good too. gave graham a bit of time to decompress.


i am resting somewhat easier. huge relief to know they've arrived safely. and we're "this close" to being through with this 'arm' of the journey.


naturally, it's gonna take some time to truly unwind. my mind is stuck somewhere in that trauma induced state of 'flight or fight' response. none more evident then when the phone rang around 6pm tonight. 


when i saw the number was coming up as a seattle area code... 
i nearly coded.
must be the surgery clinic. i immediately jumped to the conclusion that the call could only mean bad news.
i felt panicky
and
actually started noticeably shaking. 
got clammy. felt faint.


heart in throat, i picked up the phone
and
hesitantly whispered "hello"
and
then braced for bad news.


it didn't come...
the cheery voice on the other end was just calling to CONFIRM parker's appointment for tomorrow.


oh my. i nearly burst into tears of sheer relief. 


think i need to get myself back to my trauma therapist...i just need to find some trauma free time in order to free up time to schedule an appointment. ironic.


surgery will take place tomorrow at 11am. they have to check into the clinic at 10:30am. we would appreciate your prayers. parker is coping but certainly has anxiety about the surgery. today, was a terrible day for him pain wise and he had to be pretty doped up with morphine. i'm hoping he'll be feeling a little better tomorrow. 


well, i'm zonked...yet still running on nerves or adrenaline or something. hoping a little ativan and zopiclone will knock me out for the night...and hopefully, a mere 14 hours from now, parker will have his new PICC and we'll all be resting easier.

GET YOUR MOTOR RUNNING!

at 4pm today, we finally secured surgery for parker.


parker's PICC replacement surgery is set for this wednesday morning at 11am in seattle - for the blow out price of $740. this is by far the cheapest price - the alternative was at seattle children's hospital and the "best" price we could secure from there was $3000. so we feel like we've gotten a slamming deal.... as odd as that sounds.


thank you everyone for your prayers and support. please pray for the surgery to be straight forward and go smoothly...and for our van not to break down on the drive down. can you imagine? uh, yeah, actually i can...in fact, that has happened to us before. one of our doctors, dr d, has an office in seattle. the one time we tried to do a "all in one day travel plus doc appointments round trip" - our van broke down about 30 minutes into our drive and we ended up having to rent a vehicle in order to get to our appointments...and we ended up being 90 minutes late. the stress. the scrambling. the being stuck by the side of the road thing. the last minute car rental. well, it was all very costly.


so, for this reason, parker and graham will be leaving for seattle tomorrow. they will spend the night in a hotel very close to the surgery clinic (if we had a camper, i'd push for them to camp out in the parking lot).


we're very relieved we've got the surgery set...we are very pleased with the clinic and the staff. i spoke with the IV nurse who will be assisting the surgeon and she was awesome and so super accommodating. i had a lot of questions. i expressed my concerns about the use of general anesthetic for parker. that we felt it really wasn't necessary etc. she talked with the surgeon and he was totally on board with doing it without general anesthetic.  


i also wanted a very specific type of PICC. no, i'm not a PICC snob (ha ha) nor am i "picky" but there is a difference between the type of PICC used in the states versus canada. one is not better than the other. there are pros and cons to both. i prefer that parker's new PICC be a 3 french lumen "groshong" as opposed to a "solo". they generally use the solo in the USA. after discussing this all with the nurse, she spoke with the surgeon, and he agreed to use a groshong PICC as parker's replacement. i believe this is the right choice for parker...i'm so relieved about that all...albeit, i don't think i'll actually breathe easy or heave a sigh of relief until all is said and done. hopefully, i can start fully breathing again by wednesday afternoon.


get your motor running
and
head out on the highway
NOT looking for adventure
just a new PICC for our little sparky

UP IN THE AIR

so graham and are parker are NOT up in the air...yet


at the time of my last entry, we fully expected they would up in the air flying to san jose by sunday the latest. but, as per usual, we never have a straight line to run between point a to point b.


after getting the final, resounding "no, we won't help you" from BCCH late friday afternoon, we went into action with making arrangements to get down to california for the surgery. we'd already tentatively scheduled surgery there for monday morning. well, um, yeah, we called to confirm - and in the midst of the intake process learned that pediatric PICCS are now done in hospital and not at the clinic. (parker's first one was done at clinic - this is a new regulation that has been implemented since then). we were stunned. obviously, having to pay a hospital fee on top of surgery?? gulp. 


the receptionist, who sensed are despair, how could you not, it was oozing through the phone, said she'd try to get a hold of DR C (surgeon) and have him call us. DR C called us back almost immediately...and tried to trouble shoot some options with us. he knows a surgeon at Seattle Children's Hospital and said he would touch base with him personally, tell him about our case and see if we could arrange something thru that hospital - at least sparing us the travel cost of going down to cali. he suggested we give Seattle Children's a call and get started on the intake process.


we called.
keep in mind, by this time it was 4:45pm on a friday nite. we felt panicked and sick and stressed and just wanted to have some concrete plans before days end- fearing the impending weekend would delay the ability to do that.


seattle children's was so helpful. it sounds like it won't be a problem to have parker taken on as a patient and have his PICC replacement done there...however there is a catch. both are significant catches. the first is cost -ball park figure for surgery is $2000 to $4000. additionally, they do all PICC procedures with kids under general anesthetic. that upsets me terribly. in our opinion that is an unnecessary risk - for parker's case. he didn't need general anesthetic for his first placement - not even light sedation. he's brave. he's tough - and this is his second go around, so he is even more prepared and calmer because he knows what to expect.


so those 2 reasons kind of gave us pause...
and
anyway, by this time it was well after 6pm and really the window of opportunity to set anything in stone to move forward with first thing on monday morning had kind of evaporated.


at any rate, even thought we have some misgivings, the referrals were sent in to seattle children's...but we have to wait til monday to move forward with scheduling surgery. DR C was also going to talk to the surgeon there and express our concerns about the non-necessity of sedation - see if there is a way to work around that. additionally, we are waiting to hear back from their financial aid services.


even while we were dealing with trying to set something up with seattle children's we were "shopping" around at other facilities. trying to find other more viable, more affordable options - all the while ensuring that we are not compromising our son's safety and care in any manner.  friday afternoon was like PICC line command center. at one point, we had three phone lines in use, home line and both our cells. it was exhausting. basically, we shopped until we dropped. i've done a lot of shopping in my life but never for surgery - it's a rather disconcerting thought and a dreadful position to be in.


that is pretty much where things stand now.
every thing is up in the air
no plans yet
the weekend definitely hampered our ability the make further plans - 


now, monday morning is upon us and we are back up and running at PICC line command shopping center. following up calls. waiting for calls to be returned. trouble shooting problems as they arise. following up with other options. we've been on the phone with DR H's office, they're working to see if they can find a surgeon for us that is closer to home too. additionally, we have to face the possibility, that we may have to have parker's PICC removed for the time being. we are concerned about letting any time lapse between getting his iv meds into him...but there is only so long that it is safe to keep in a malfunctioning PICC.


we knew we could "safely" keep parker's picc line in place until today. after all, he was discharged from BCCH, with a plan for us to continue to administer his meds thru it (gravity infusion doesn't work however syringe pushes "bolus -method" work)...until he had his replacement today (which, of course, we all now know then got devastatingly terminated). we feel like we are working on a bit of borrowed time after today because running his IV meds through this "bolus" method was a very short term solution. 


we've had several emails from other lymies and friends whom all have had wonderful suggestions or alternative options. we are so grateful for all the effort, time and energy, folks are taking to help us find a solution. i know there have been some questions too - as to the nature of the issue with his line and still pushing for medical care here or at another local hospital. 


first of all, from our understanding and why we've dead ended here in canada is that BCCH is the only hospital that places pediatric PICCS. even the big, metropolis, out lying hospitals in our area don't do PICCS on kids. 


what about just going thru ER at BCCH again? after all, they diagnosed the PICC problem therefore they should be responsible to "treat" that diagnosis. well, truth be told, we thought about that too. what happens if we just keep showing up in the ER? better yet, we have discharge papers from BCCH that say "diagnosis" is malfuntioning picc line. AND come back monday for replacement surgery. so we have proof - maybe we could just somehow by some miracle slide in under the radar....
nope.
after risk management told us the answer was an unequivocal no, we were also told that all departments in ER and radiology had been notified of the situation and had orders to "not touch" us. 


a media outlet was alerted to our story and they contacted us over the weekend. it is a large media outlet. they want to pursue this. however, at this time, all our time, energy and effort must go into trying to secure surgery for parker. and telling our story will make us relive the horror of the past 48 hours...and we are just too emotionally raw to go through that again. way to raw. 


i've also been getting questions about what the nature of the problem is with parker's existing PICC. i want to be clear that the line itself is not infected. there is no blood clot nor blockage that could be detected through x-ray - the problem with it is two-fold; first, the tip (internal end) of it is way out of place. it should be in place just above his heart and it has moved much further back - i believe it is somewhere around his shoulder. in addition, the line itself is internally kinked.   - and now we're in crunch time. we feel desperate. panicked. scared. not a good way to feel, when you are in the midst of trying to make medical decisions and plans.


please pray that we'd have a concrete plan of action by end of today.

NO RECOURSE

we've fought
we've lost
there are no options left here in BC
and
we have no recourse


our son has been denied access to medical intervention. period. end of story. the only other option we'd have is to try to press for a reversal of denial thru media outlet and/or trying to get our situation heard by the health minister through our MLA. but time is of the essence here. and that would take time, energy, effort and all with no promise or guarantee of a favorable outcome.


these last few days have taken a tremendously enormous emotional toll on us. most importantly, parker has been exposed to all of it. again. he's been in every appointment and heard with his own ears, doctor after doctor deny him care. 


at this point, we have to do what is RIGHT for our son...and not try to make our medical system do right for him. they won't. they've made that clear. at this point, the continued denials are as damaging to his emotional well being as the denial of care is to his health.


parker and graham will be leaving for california as soon as possible. PICC surgery is scheduled for monday morning with DR C in san jose.


nothing more to say. thank you so much for sending your love and support our way. it is what keeps us going.

DEVASTATING DENIAL

we just received a phone call from the ER doc that wrote the order for PICC replacement surgery yesterday.


her order for replacement has been DENIED by the head of pediatrics at BCCH.
yes.
they have DENIED parker vital medical intervention. 


we are devastated. when graham left the hospital late yesterday afternoon, it was with the understanding that they would be moving forward with the PICC surgery - possibly on monday. the IV nurses and the surgeons came in to see parker before they left yesterday and everyone agreed that his PICC absolutely needed to be replaced - and with some urgency. after spending 5 hours in hospital, an ER finally wrote a new order for the surgery. and we were to call in monday morning and hopefully he'd be slid in on a time slot for that day. 


we were so relieved and grateful...but still incredibly on edge...i couldn't even utter a breath about this being a possible go for monday because i just thought, "what if..." i didn't feel we could really breath nor let up on intensly persistent prayer until he was actually on the table monday morning....


but
i wanted to keep folks updated and as current as possible...so, i was actually just blogging an update about it when the phone rang...
when i saw that is was BCCH on the call display, my stomach hit the floor and i started shaking.


i knew. i just knew.


yup.
denial of surgery.
devastating denial.


on the phone was the ER doc that wrote the order yesterday. she's not the one who has denied it, her superior did, her superior just made her do their dirty work - she was calling us to let us know that the head of pediatrics has denied her request and they are withholding medical intervention. i actually felt bad for her...and as much as both graham and i wanted to unload on her, why shoot the messenger? i tried to hold it together but i just broke down and bawled on the phone with the doctor. even after all we've been through, we were totally shell shocked. blind sided. wind knocked out of us. crushing, crushing, crushing. devastating.


i have been sobbing hysterically for the past hour. shaking. and let me be honest, expletives have been exploding out of my mouth with lightening fast fury. 


i cannot tell you what it does to one to have your child DENIED needed medical treatment. urgently needed emergent care. it is beyond devastating. beyond.


the basis of denial is that the head doctor (of whom the ER docs referral had to be "approved" by) doesn't agree with parker's diagnosis. he's never even met parker. but he "consulted" with the docs that were initially involved in parker's case (18 months ago) - remember these were all the doctors that were unable to diagnose him with anything. and they all (privately) agreed that his condition improved once he started treatment for lyme. but none of them will step forward and publicly admit or acknowledge that to their superiors...they all jump ship and say they don't agree with his diagnosis or treatment therefore they can "absolve" themselves and deny him care. worse than that, is that we're not asking him to agree with the diagnosis or treatment - what we're dealing with right now is a medical emergency - parker has a malfunctioning PICC line that requires fairly immediate attention. 


so what to do? well, after hysterically sobbing and swearing and screaming at the injustice of it all, we picked up the phone and started making plans...parker is tentatively scheduled for surgery in San Jose, CA with the surgeon who put in his existing line. the surgery is scheduled for this monday morning. we have a friend who has offered us use of her air miles for flights.


and we have also put in a phone call to the patient advocacy/risk management team at BCCH. we are still fighting to have it done here. we deserve care in our own country. this is about a little boy...not about a disease - whether recognized or not...this is a child, our son, with an emergency situation that requires medical intervention and as such it should not be denied. 


we're not holding out a lot of hope that risk management will be able to turn the tide here (they were "well aware" of the "lyme issue" and reminded us that BC doesn't believe in the existence of "chronic lyme disease" but they also stated that this was an emergent issue of a child that should be tended to...) they said they will investigate and will let us know by 4pm today if there is any re-course here. 


so we will hold tight until 4pm...continue to microscopically hope...and pray...and scream...and grieve...and rage...and cry and cry and cry...and eventually, i'll mop up my tears, and wash out my potty mouth with soap and try to repair this gaping hole in my heart. i don't want to be bitter...there is already enough burdens to bear.  

PRAYERFUL PERSISTENCE

graham and parker are still in the hospital. i just spoke with graham and our suspicions have now been confirmed - the doc from last night NEVER wrote the order. it's not a surprise but it is still a huge emotional blow - a shot in the heart. a big one. 


graham is being persistent and thankfully, the IV nurses at the hospital are advocating on our behalf. the surgeon has been in to see parker and everyone (nurses, us and surgeon) are in agreement that the surgery needs to move forward...but that cannot happen without a written order from a doc...so there is still a chance...i am a wreck, parker is fed up and graham is tired but persisting.


please continue to persist in prayer.


i am so grateful for the messages of support. i am tired. i am crying a lot. i don't get why every step of this journey has to be a fight. i am faint and weary of heart. your support really means a lot.

A LOST CAUSE?

graham just called from the hospital and the surgery (for today anyway) is a NO GO. somehow between last nite at 11pm and 7am this morning, the order for the surgery has gone missing. i am not surprised. not at all. when i spoke with graham last nite, i told him to get a copy of the order before he left the hospital...unfortunately, he didn't. he tried - but it didn't happen (it's a busy place) and parker was so sick and tired and it was midnight and the doc said he'd write the order...but now that order is no where to be found...and we have no record of it or proof of it...the surgeons cannot do surgery without an order from the doctor.


the IV nurses down at BCCH have been and are amazing. they have been wonderfully supportive and are working hard to find the mysteriously missing paperwork. if it has simply just gotten lost in the shuffle (as is possible in a busy hospital) than we still have a shot at getting the surgery done next week...the earliest would be next tuesday as PICC surgery at BCCH is done only on tuesdays and thursdays. we are now trying to problem solve the logistics of administering parker's IV meds until then...graham can't keep taking him down to BCCH every 8 hours for infusions indefinitely...and naturally, in case this is a lost cause, we are starting to make preliminary plans for scheduling an unexpected trip back down to california to have replacement done by surgeon down there...just in case 

of course, we are semi-hopeful that the ER doc kept his word and did indeed write the order and that the paperwork is just legitimately "lost", and that our whole hope for surgery to be done here is not a lost cause but, well...hope is waning...being hopeful can be exhausting..

PRAYER FOR REPAIR

the whole fluid on the brain thing (a type of intracranial hypertension - IIH) has had me laying low for the past week...not even been up to keeping up with my daily drama posts...i am responding to the specific treatment for the IIH and that is a good sign; my vomiting and nausea have dramatically improved ...but i am weak, drained, easily fatigued and dealing with some significant neurological stuff still...will update more specifics when i'm able...for now, i've roused myself from my bed long enough to put out the following prayer request...it is urgent


parker has not been well either (duh)...he is on a rigorous IV treatment schedule - he has IV infusions at 7am, 3pm and 11pm every day (add 2 more time slots if its a bad pain day and he needs iv pain meds) anyhow, i'm getting caught up with details that a fairly unimportant right now...the short of it is this - parker's PICC line (seemingly out of the blue) stopped working properly today. our home care nurse was at the house "trouble shooting" for over an hour earlier this evening. his line will flush but the meds don't (gravity) infuse and they cannot aspirate it (draw blood from it). his home care nurse sent him to the hospital.


graham took him to hospital and at the hospital it was determined that he needs to have a new PICC line put in....


it is rare for anything pertaining to parker's care here in BC to be easy or straightforward or come with out a fight...and even then, it has rarely been forthcoming... we are desperate for this surgery to be done HERE...pls pray that this will happen... graham had to be incredibly persistent with the ER doc but the doc did eventually agree to write the order for the surgery...do we dare hope? i don't know...i won't believe it until he's in surgery...nothing is written in stone yet...so we need prayer for repair - 
'
parker's 11pm dose of meds was run at hospital tonight with IV pump. graham has to take him back tomorrow at 7am for his morning dose. hopefully we will find out tomorrow morning if he will be scheduled for PICC surgery.


i will update as soon as we know more...it's gonna be a long nite...honestly, it's just all too much and twisted and i am tired of the fight and upset that i couldn't and can't be there to comfort parker. he is understandably very upset. he is so brave and has been thru so much crap. when is "enough" enough?

DRAIN THE BRAIN

i'm being treated for excess fluid on the brain. docs think this is what is causing my barfing, nausea, extreme fatigue, eye & head pressure. those symptoms have been going on for several weeks and getting progressively worse and this week it just all spun out of control - I started being incoherent, couldn't walk...even infusing straight IV fluids to keep me hydrated made me nauseated and vomit.
i don't have a ton of recollection of past several days - i know it got really bad wednesday afternoon. i remember Graham carrying me to the car. i remember the doc coming out to the parking lot to see me in the van. i remember searing pain. i remember being really, really hot & wishing i'd just melt away...into nothingness.

i don't remember coming home. i remember Graham giving me meds and saying if there wasn't big improvement by next day, doc said I had to go to hospital. i barfed again. and again and again...but by next afternnon, nausea was a bit better

and so the week has gone by. a blur of sights, sounds and pain id rather not remember.

i'm not able to be out of bed or around much noise or activity but yesterday & today, i managed to grt to couch on my own - had to shuffle and hold on to stuff, i'm exhausted, i've got arrythmias, i'm super tired, feet & hands on ice b/c of painful neuropathy, vision wonky, dizzy, blah, blah, blah...but pain has eased (thank you morphine) and horrible eye pressure and head pressure is improved...nausea and barfing have been significantly reduced. and I can lie here and type coherently... would write more but i'm just so tired...but we are seeing small improvements so we're hopeful docs are on right track in the whole drain the brain thing.

[Posted with iBlogger from my iPhone]