September 12, 2011


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...
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....
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.

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