May 26, 2010


overtired sailors and a minor emergency meant our plans for a laid back sight seeing cruise through SF did not happen today. rather, we were forced to navigate through a sea of lines and before the day was done we even ended up (unintentionally) dancing in a riptide - thankfully, even though we broke some rules, we survived.

my picc line (peripherally inserted central line) provides access for my iv meds. the blue cap (resting on my forearm) is where i attach the iv tubing and iv bag when i run my iv meds. the skinny blue line that disappears through an insertion point in my skin travels up a vein in my arm and exits just above my heart. it is about 50cm in length. because the line is semi-exposed (meaning insertion sight is open) the sight and area surrounding it must be kept exceptionally sterile. the entire is cleaned and re-dressed (or covered over) with a big, clear "band aid" once a week by my home care nurse. it is a very sterile procedure.

every week the nurse brings the sterile kit that is used to clean and change my dressing. for several reasons, my kit is very specialized and contains several different components that are not included in your average, run of the mill picc kit. whenever we travel i always take a kit with know, just in case something happens. in all our travels, nothing has ever happened. in fact i almost didn't bring the kit with me this time. space in our luggage was at a premium and the kit is bulky and awkward to pack. i seriously debated leaving it behind. let me tell you, today would have been a shipwreck of a day had i left it behind.

while i was waiting for the boys to wake up today, i hit the treadmill in the hotel's gym. (how fabulous is that?!!) which was great with the exception of one slight problem. i got overheated and my arm got all sweaty under my picc dressing "band aid". this resulted in the band aid lifting. which meant that my line and insertion point were exposed and no longer sterile. which meant that i needed to have my picc arm sterilized and re-dressed pronto. now what we should have done is made a beeline for DR Hs office. he has a nurse on staff that could tend to this delicate and very sterile procedure. however that would have cost money. so graham and i decided to undertake the procedure on our own. after all, we had the kit and i have watched a nurse do this every week for the past 2 years. i bet that i could do it myself with my eyes closed... utters she who was an absolute stressed out, freaked out, shaking wreck as she directed and nervously shrieked orders at her husband as he donned the unwanted role of picc nurse.

anyway, we managed. got 'er done. dangerous seas safely crossed and shipwreck avoided. phew.

neither of the boys were up before 1pm so by the time they were functional and we had mucked through our hour long foray into sterile procedures, the day totally got away on us. we ended up not being ready to leave the hotel until 4pm. we figured it was a little too late to tour the city so we headed down to half moon bay instead.

we 'discovered' half moon bay on our second trip to california. at that time, another canadian family was living there while their daughter was undergoing treatment for lyme. over the years they have become very dear to us and so we tried to connect with them as often as possible when we were in town. after spending an afternoon with them in their temporary residence in half moon bay, we ended up stumbling upon this little italian restaurant. and there we discovered the most majestic pizza ever. yes, i meant to write majestic. i've not mixed up my adjectives.

now it has become tradition to go to half moon bay for this majestic pizza on every trip. we have ended up having the same really sweet waitress every time too.
which has kinda added to the specialness of the experience. we took parker in december but he ended up getting really really sick just shortly after getting to the restaurant and so we had to pack up and leave pronto. we promised the kids that we would take them this time...despite the fact that avery "hates" pizza. half moon bay is a really pretty little seaside town with fantastic beaches so we were hopeful that a trip to the beach would be a fair compensation for avery. she LOVES the beach.

parker was in pretty rough shape when we set out but we hoped he would regain his sea legs in time to enjoy the beach. lately, he has had very dramatic fluctuations in his symptoms. he can literally go from laying on the couch writhing in pain to a minute later, standing up and asking graham to go outside and play hockey with him. yes, as incredibly insane as it sounds, it is true - in the blink of an eye, his condition can change that dramatically.

we had a really incredible time. parker did temporarily regain his sea legs and was able to horse around on the beach. both the boys engaged in a favorite past time - torturing their little sister.

for me there is something incredibly healing about being by the ocean. i have often said that it would be my dream to have ocean front property. and hey, that may not be such a pipe dream - graham and i often joke that we are so broke that we will probably have to retire to a cardboard box under a bridge. but hey, where there are bridges there is water, right?

as i sat on the beach, breathing in that salty air and getting lost in the sound of waves, and watching the kids race around, i could almost pretend that this was a vacation. i could almost forget that we are sick. that a wheelchair is not just a stone's throw away waiting for the moment that ability is once again snatched away. i could almost ignore the ache in my heart and my fear of the storm that is brewing just beneath the surface of my smile and jokes and the kid's carefree playing. amidst all my pretending and forgetting and snubbing my nose at reality, i neglected to realize that i was allowing my children to dance with a rip tide.

note to self:
pay close attention to large signs that say DANGER.

oh buoy!

in reality we dance with the riptide of lyme everyday. i often feel like i am one wave away from being swept away in a sea of pain and symptoms and confusion and discord.
today, for a moment, i could almost pretend that we were just your average family enjoying the sand and surf. i cherish these little moments of respite and i hold on to their memory for dear life. it is these moments that somehow keep me buoyant amidst the turbulent seas that we sail.


Renee said...

Don't you love those average family/people type of moments! I hope they continue on for you becoming more and more of the norm....

Kara said...

Gotta love the picc line change story. My husband (Don) can now get with graham and swap stories. Don was my picc line change nurse for a very long time. About 2 years I think. He had it down to a science. Your line is truly tiny, by the way. :-)

The beach pictures are terrific. It's great to see Parker up and about -- at least at times.

Hope you and Parker and Taylor and, well everyone, are having a 'good' day! {{hugs}} ~Kara