June 12, 2013


we're dealing with a worst case scenario.

sparky's veins have been collapsing for the past 4 weeks & using peripheral IV lines to administer his meds is no longer a viable option. this means he cannot receive IVIG treatment & because he has not been getting his doses of IV antibiotics, his health is de-stabilizing. 

the only option left is to get a vein study & PICC surgery done in the USA...but this is complicated by action taken by children's hospital. just over a year ago, they made threats that culminated in the removal of the PICC line he had in place at the time and they then instituted roadblocks designed to keep us from getting a new one put in - either in canada or the USA.

a year later, we still live with their threats echoing in our ears and fear the consequences.

when this all happened back in february 2012, we blogged about it here but never went into full details. we remained vague for good reason, at the time, we were absolutely traumatized. dumbfounded. blindsided. terrified.

we were between a rock and a hard place.

sparky went without IV treatment for the next 3 months.  

his deterioration undeniable.
his suffering agonizing. 
the cause of it criminal.
their interference was incomprehensible.

despite, DR H's best efforts to stop the decline with oral abx, sparky spiraled downward without IV abx
we knew, without a doubt, that he needed that which had been unjustly removed. 

but how?
we were between a rock and a hard place.
but God...

it was by way of miracle that God provided a way out of that rock and hard place situation. the peripheral IV plan was our miracle. our way out. our way of getting sparky the treatment he needs. 

now his veins have crapped out. even when they get a line in, it quits working in short order or his body just rejects them. no one could have ever anticipated that this would occur.

last week, the doc tried to access his vein 6 times...but to no avail.
even after enduring all those pokes, sparky piped up,

"too bad i'm not an octopus. at least we'd have a few more options."

i am continually amazed at how he maintains in his humor in the face of suffering and adversity - he truly is a unique and unusual kid - but, unfortunately, his uniqueness does not include 8 arms.

and so,
we are between a rock and a hard place. again.
but God...

we pray and wait for God to make a way out.

over the past 3.5 years, we have had to go to extraordinary measures to get sparky the treatment he needs. 

we will continue to do so.

and God has moved in extraordinary ways to provide a way thru.

we know He will continue to do so.

1 comment:

Anonymous said...

I'm thinking of all of you..know this is a really hard place, Shannon...hoping someone steps up to take this on. We'll be home on the 24june...hoping to connect then.
Wishing, hoping, sending positive vibes across the miles for a positive resolution....
hugs, hugs, hugs and strength,