September 29, 2010


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.


VictoriousVixen said...

I totally don't blame you for insisting on the first infusion duties...sterility is paramount when it comes to those pesky PICC lines! Thanks for the update. =)

Julieslymediseasefight said...

Wow you all have been through a lot! Keep on fighting!!!