THE FIRST TIME...

no sooner did parker get his PICC installed, then it started:

"this is my first time on FB with a PICC"
"this is my first time eating with a PICC"
"this is my first time in a hotel with a PICC"
"this is my first time driving in the car with a PICC"

this is how the story goes - i can't even remember how the first time thing started (it preceded this trip) but it has taken on a life of it's own.

this afternoon parker had his first dose of rocephin.

say it with me, "it was his first time running iv with a PICC"

the momentous occasion was done at DR H's office. the first dose is administered in office and under observation "just in case" - there are all sorts of possible side effects the meds can cause - ranging from a mild allergic reaction to life threatening. technically it is the job of one of the nurses on DR H's staff to prepare the meds and administer the first dose. technically, mother's should back off and let the nursing staff do their job. after all, they are more than capable. technically, THIS mother has been administering IV meds for 2.5 years. technically, this mother has earned an honorary degree in nursing. so back off. this mother is taking over. this mother re-constituted and administered her son's first dose...she kindly agreed to let the nurses oversee HER doing THEIR job. ha ha


so here's the bombshell - i figured if i want it done right, then i'd better do it myself...if I do it, at least i KNOW it is as sterile as sterile can be. over sterile. i am fastidious about sterility. paranoid. super fussy. it wouldn't surprise me if i'm eventually accused of causing a world wide alcohol swab shortage. that i should be so brazen as to override someone with an RN after their name because i think i know better probably outs me as a bit of a control freak but so be it. this business of having sick kids is hard. really, really, really hard and it leaves you feeling really, really helpless. watching a disease attack your children strips you of the (maybe delusional thinking) that you can protect your kids, keep them safe or make things better. when critical illness strikes your kids, it shatters your world. technically, no mother should have to watch her child(ren) suffer.


our appointment was booked for 1:30pm. with taylor's insomnia consistently keeping him up until 4am, 1:30pm is the equivalent to an early morning wake up call for him. even still, taylor insisted we get him up so that he could come with us. he really wanted to be there for his little brother. i love that it was important to him to support parker in this way - even if it meant getting up way before his body would want him to.

we were at DR H's office for about 3 hours.

"this is the first time i'm walking with an IV pole since getting my PICC"

we are relieved that parker had no reaction or side effects to the IV med. now that he has a PICC we can better address his dehydration issues. (these due to intense nausea). i am very relieved about this. his meds could be administered in 100ml bags of saline but we will be using 250ml bags to help keep him better hydrated.

IV treatment will now move full boar ahead. parker is being given 1 gram of rocephin, 7 days a week. for the first 2 weeks, his infusions will be run at a slower rate - over a 1 hour period. this will give his body time to adjust. eventually, the goal is to infuse the meds in a 30 - 45 minute time frame. DR H said we should prepare for him to start herxing within 4 days. fortunately we'll be back home in canada by day 4. so at least, he will be back in the comfort of home before the meds start killing bugs which will in turn make him super sick.

i suspect that his first herx on IV will be delayed. i'm not a doctor but hey, given my own experience with this disease, i've probably earned some sort of honorary degree...or two...or three. i could be wrong so we'll brace for impact on day 4 but parker was in really rough shape the week before we left for SF. he didn't even make it to school at all that week. it is difficult to distinguish whether his symptom flares are due to herxing or are just 'bad days' because his body still harbors a very high load of bacteria - which wreak havoc on his body either way. in the past 2 months, we have started to see the beginning stages of a more defined 4 week cycling of symptoms but it is still not completely identifiable.

"this is my first time on DR H's couch while running IV since getting my PICC line"

the borrelia (bacteria that causes lyme) are most susceptible to the antibiotics about every 4 weeks. which is why, with time, patients tend to have really big flare of symptoms (herx) every 4 weeks - this is because a bigger number of bacteria are killed off during that phase than at any other time in that 4 week cycle. overtime and once the overall bacteria load has been significantly reduced, there becomes a more readily identified respite period after a herx. which means that immediately following a kill/die off phase (herx), patients tend to experience a significant reduction in symptoms and some semblance of 'wellness'. as treatment progresses, the herxes become less intense and shorter in duration, and the patient's symptoms begin to become less pronounced and debilitating between them.

last week was a really, really bad week for parker. over the last couple of days, he has been significantly improved. this makes me suspect that he may have just come through a death to bacteria phase. if i am correct, than the next time those suckers can be annihilated in a note worthy amount will be about 3 weeks from now.

time will tell, i suppose.
but sometime in the next 4 weeks, parker is bound to have his first herx since getting a PICC.

MEET RAYMOND PICC-ASO

this is raymond PICC-aso...aka parker's PICC line




why name his PICC? well, why not? i was going to say we encouraged him to name his PICC as we thought that would make getting it and having it seem more normal - but now that i've written that, i'm realizing just how ludicrous that sounds. ha ha, let's name and humanize an inanimate object that is surgically implanted in your arm. oh, yes, sounds real normal and comforting. then again, not much about our family is normal either. so, in goertzen world, this makes perfect sense. after all, avery named my PICC "mr picc" and she insists on always giving him a goodnite kiss at bedtime. and who can forget felix, my deceased gallbladder whose remains were donated to igenex for lyme research? so strange as it sounds, it would have been weirder if we hadn't named raymond.

why raymond PICC-aso? parker likes the name and it is the middle name of his best bud, chris. he is hoping that raymond will help him be able to see a lot more of chris in the coming months. and the PICC-aso? - well that is compliments of (taylor's GF) mara's genius creativity.

today, raymond was integrated into our life. DR H told us to expect raymond to be in our life for the next 6 months to a year. we spent the morning in appointments with DR H and then went straight from his office to the surgeons. parker was understandably really scared and nervous and so we tried to distract him with as much humor as possible in an effort to keep the mood as light as possible.



soon after our arrival, we met with the surgeon, DR C. he came in to examine parker, explain the surgery and answer any questions we might have. he was so kind and sweet. he took his time with us and this soft spoken man's caring demeanor had a very calming affect on all of us.

parker and DR C

a nurse then came in to further examine parker and prep him for surgery. she had a long list of questions she had to ask him. even though parker was really nervous it didn't stop him from being cheeky as the monotonous questionnaire endlessly stretched on.

"how much do you weigh?" the nurse asked
"68lbs. actually, 68.2lbs to be exact." he quipped
" thanks. i'll put 68 - i don't do decimals." she teased back.

the questions continued...then she asked him, on a scale of 1 to 10, what level his pain was currently at.
without missing a beat, he cracked, "it's about a 7.5 "


we all nearly lost it. it's a good thing the nurse had a great sense of humor. whilst that was going on, taylor snuck off into the hall and added a little extra something-something to the surgery line-up board:

look carefully - upper left hand corner

shortly after all our shenanigans, parker was taken into the OR.



over the past couple of weeks, i've endeavored to prepare him - we talked about the surgery, what he could expect, what part would hurt, etc; i also had him help me flush my PICC and hook up my line to my meds; and of course, we encouraged him to pick a name - and i made clothes for raymond PICC-aso. raymond doesn't actually have arms but with a few minor adjustments, i was able to make him a cool jersey.


parker's relieved that raymond is a canucks fan - even though he is american. the green gingham sleeve is raymond's raincoat. he isn't a fan of water.



i really hoped and prayed that doing all these things would help him prepare for the surgery and cope with living with a PICC long term. i remember how very nervous i was when i got my first PICC line. i've gone through an additional picc placement since and even though i could prepare him based on my own 2 experiences, i still really can't imagine being 10 and going through it. his courage astounds me.

we expected that the surgery would take only 30 to 45 minutes but it ended up taking a lot longer. over an hour. the wait was endless. even though it felt like an eternity, i did have peace and calmness through out. that was due to the power of prayer. and parker came through with flying colors and sporting the purple raymond PICC-aso

post-op and feeling pretty rough and in a lot of pain.

internal view

please pray for the insertion site to heal quickly and that parker would not develop any complications. i have had my current PICC for just over 2 years now - and besides a minor reaction initially to the inclusive dressing used to seal it and a few bouts of phlebitis, i have had no problems with my PICC. that is the exception to the rule. we're praying that parker's body will take to raymond as well as mine has to mr. picc. having a PICC line is not without risks, such as infection, sepsis, phlebitis and blood clots. due to extenuating circumstances, parker is at a greater risk for developing an infection, so we ask that you pray for protection.

before we'd even left the surgeon's office (which was in san jose), parker's smile was back (thanks in part to pain meds) and raymond was resplendent in his jersey.

ironically, the san jose sharks skunked the vancouver canucks tonight.

THE RENTAL CAR DEBACLE

last friday graham, avery and i were involved in car accident. sigh. thank goodness graham and avery are fine - i've got soft tissue damage in my neck, shoulder and knee and our van? a total loss. gulp. the timing could not have been worse. (er, is there ever a good time for these things to happen?)

the accident happened 2 days before we had to leave for seattle for appointments with our doc there. so it was a mad scramble to secure a rental vehicle in order to get seattle - and not just any vehicle would suffice, we needed one that would fit 6 of us plus parker’s wheelchair. naturally, it just so happened that the only vehicle available was an SUV – with literally zero trunk space.

we crammed everyone in – which required a lot of flexibility but thankfully no bones were broken in the process. we were barely even out of our driveway before the moaning and groaning started;

i'm squished... i'm too hot... i'm too cold... i have no leg room.

with barely 10 minutes into our 2+ hour drive, we had to pull over and redo our packing job. everyone piled out. everything was pulled out. with some creative engineering, we finally came up with a seating plan that worked for everyone.

even though they won't admit it, i suspect the boys were thinking that our SF boat car would have made a sweet ride. avery, was greatly disappointed in our rental - but for very different reasons than we had - she was deflated as she had hoped we’d get an RV. oh my! an RV? where that came from no one knows. she is rather persistently lobbying for a motor home to be our replacement vehicle.
and the replacement vehicle ? well we're just having to trust on that one. currently we have no vehicle. with the pitiful payout we’ll get from insurance for our now deceased minivan, it will be challenging to find a replacement. for now, all of that will have to wait until we return from SF.

yesterday (sunday), we left for Bellingham, USA. it’s about a 45 minute drive from our home – across the border. we fly from there as it is far cheaper than flying from Canada to SF. our flight for SF left early this morning, so our friends drove us across the line last nite. thank you dick and tina for the lift! the border line up was minimal entering the USA but it was very backed up coming back – we’re hoping they didn’t have an insanely long wait.

our hotel kindly provided us with taxi service to the airport this morning. much to our amusement, 2 cadillac town cars showed up to whisk us away. we even had a race. the car with graham and parker took one route while mine and taylor’s driver took another.

we won. ridiculous what one finds entertaining in the wee hours of the morning.

our flight went well…and disappointingly uneventful. ok hold up, it’s not that i hoped for any excitement on the actual flight, i'm referring to the security and pre-boarding.... there were no sandeep sightings this time however we did manage to have a completely fruity security guard.
passing thru the first security checkpoint, i asked if it was ok for me to bring my banana thru

"sure, no prob – any fruit is all right." he replied

graham made some reference to some monty python sketch and that’s all the encouragement the security guard needed.

the guy proceeded to start listing off fruit:

oranges
passion fruit
watermelon
cantaloupe
pomegranates

whilst still continuing with his fruity rendition, he escorted us to the second security checkpoint

plums

grapes

pineapple

on and on and on went the fruit spewing guard. last I could tell, he was still reciting every fruit known to man as we departed.

once we were settled on the plane, i asked parker what kind of rental he was hoping we'd get this time around.

“anything but a car boat.” came his immediate reply

taylor said nothing about the matter. in fact, he had no comment on any matter. he slept the entire flight.

lyme exhaustion. one of the symptoms he struggles with the most right now is the brutal insomnia that accompanies lyme. that insanely horrendous insomnia. most nites he does not fall asleep until 4am – having to get up at 5am to catch our flight this morning was terribly hard on him. this extreme insomnia has been going on for months now. last week, when we saw Dr D (our seattle doc) she recommended some additional sleep aids. the melatonin that has considerably helped parker, has had little effect on taylor. DR D put him on a valerian/skullcap supplement and we’re hoping that will kick in. we're sure DR H will be adding in some meds when we see him on tuesday.



we landed in SF just after 10am. how amazing to arrive to find the weather warm - actually hot – piping hot! got all the way up to 95 today. parker wheeled and we trudged from terminal to car rental tarmac. the boys were already wincing at the thought of what the parking lot would reveal.

it's terrible that the first vehicles we passed were a camaro and a charger...having to walk past those was a tragedy for them! – and then much to their profound dismay, the agent pointed out our rental – a florida retiree's car boat

I nearly peed my pants laughing. taylor opened the trunk and exclaimed, “wow. this thing is so massive, i'm surprised there isn't a pool back here.”

parker was utterly disgusted.

soon after getting in the back seat, he muttered, “i’d rather get a PICC LINE than a nasty car. and now I’m getting both.”

once again, we bobbed our way across the san mateo bridge to our hotel.

avery stayed home this time. we gave her the choice - she opted to stay home because she didn't want to miss school! atta girl! my folks and graham's mom will be spoiling her this week. as much as we miss our sunny, joyful little girl and her spirited chatter – we are relieved she is not with us this time. we have 6 hrs worth of doctor’s appointments tomorrow and parker's picc surgery. it will be a long stressful day -

but tomorrow and all it’s stresses and worries can wait. today I'm gonna loll by the pool and soak in some rays. and i’m gonna try to forget that this isn’t a vacation.

WHERE DO I START?

where do i start? where do i begin?

it’s been a long time since I blogged. too long. i know. not since june 12. wow.
obviously I can't expect to catch up in one post – but where do I begin? do I pick up where I left off? or simply drop in after a near 3 month hiatus and just plunk out the latest? the more time that passes it becomes harder and harder to know where to pick up the story from.

i’ll start with the obvious...

A LOT has happened since my last post.

...now that you’re all caught up on the past, i can move on to the present.

kidding. ha ha.

but seriously, not knowing how or where to start is paralyzing. kinda like trying to catch up on that long neglected scrapbook - time gets away on you and when you have so much to catch up on, it becomes totally overwhelming. it's probably the reason why taylor - who turned 18 THIS WEEK, has only the first year of his life documented in a scrapbook. i am frozen with indecision.

where do I start? do i start at the beginning and work my way to the present or do I start with the present and work my way back? and all the while I am trying to decide between starting with the past or the present - the present becomes past and there is a whole other day, week, month to catch up on.
harrumph

and how'd i end up in this predicament to begin with? what in the world happened? what precipitated my self imposed blogging exile anyway? in a lot of ways we had the most incredible summer - we were blessed to be gifted with several mini get aways - these times were priceless and far too precious to not have an entire post exclusively dedicated to them. and in a lot of other ways, well, it's just been hard. really, really, really, really hard. quite frankly the reasons, both positive and negative are multifaceted and complex. bit by bit, i intend to break it down over time. for now, i need to break in slowly and briefly...

here’s the briefest of briefs on our health over summer:

Parker made some good progress – albeit he has a long way to go. but he was OUT of his wheelchair for 14 straight days in august. we celebrated those days and braced for impact when they ended. he still suffers incredibly on a daily basis but his suffering is interspersed with periods (hours) of relative wellness. given his overall progress, we were hopeful that he wouldn't need IV treatment. that has not been the case. we leave tomorrow for SF to see DR H. on Tuesday at 1:30pm, parker will be undergoing (minor) surgery to have a PICC line placed so that IV treatment can start. the surgery will be done by DR C in san jose. he and we have great anxiety about this. it is scary. it is tough to face. tough enough to finally bring me out of my blogging exile. after all, we're gonna need an army of prayer and support to get us through this next week.

Taylor didn’t start aggressive treatment until july – so he has had a bummer of a summer. that has been really, really hard for him and us. at a time when he should be preparing to leave the nest, he is completely cooped up. however, on the bright side of things, i don’t know too many moms who can say their 18yr old son spent more time with them than with their friends this summer. that is nice. they grow up too fast.

physically i had the best summer since getting ill in 2006….june was horrendous but july was magnificent. i had 3 weeks where I was 90% symptom free. that was remarkable. a first to be at 90%! and then for it to last so long. it was pure bliss. I made up for a lot of lost time with my kids. the boys weren’t always up to doing much, but avery was always game. we had many "girls only" adventures. she often remarked how nice it was to have a mommy who could play with her.

august brought with it more sunlight and the hope that maybe, just maybe, the good days would continue to outweigh the bad. i had one really rough, as in flat on my back, herxing week each of those 2 months – the rest of the time it fluctuated somewhere b/n “so-so” and “90% symptom free”! after what I’ve lived with even the “so-so” felt extraordinary!

emotionally, this has been and is the toughest, roughest, rawest time i have ever gone thru. my progress has been remarkable, yes, yet celebration of that is tempered by watching my boys lose their ability. there have been a lot of tough, dig deep, all hope is lost, types of moments over the past 4 years but nothing comes close to the toll it takes when watching your kids suffer. nothing.

really, at the heart of it, i guess a huge part of my self imposed blogging exile has to do with an inability to write about any of it - both the joys and the sorrows. after all, celebration so very often ends abruptly and the fall is far and the landing cruel. in order to cope, i just had to shove most of my emotions into the furthest recesses of my mind. something about me sitting down to write always forces me to delve deep - and I just couldn’t spare the energy to do that – it has been an immense struggle to keep my emotions in check and i feared i would come completely unglued if i faced them in black and white...

i'm relieved to see i've not come unglued as my thoughts have made their way back to the page. that's a start.

maybe I can catch up. maybe I can face my life.

past, present, everything in between.

yeah. maybe, just maybe, i’m back from my self imposed blogging exile.

it's good to be back.