September 9, 2011


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.
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....

i wanted to keep folks updated and as current as, 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.

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.  

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