1 DAY OLD
4 WEEKS OLD
if you're not familiar with our family's slightly odd, off beat sense of humor, the fact that we named a medical device may be confusing. and the name "viral" may further confuse you. first off, you can read about felix here and and about mortimer here for some background on our family's penchant for naming inanimate objects and assigning them personalities.
you can read about the story behind the name for parker's last PICC, raymond PICC-aso here . in case you are unfamiliar with what a PICC is or what it looks like, here's a picture that'll help you at least visualize what is...
The photo below is Raymond Picc-aso post-mortem... he donated his body for the sake of science
between the 2 blue push pins
is the pressure cap, hub, and wings. those are the external part of the picc. the pressure cap is where IV tubing and syringes are attached to administer medications.
between the green pin and the red pin
is the long, purple line.that is the part of the picc that is internal.
below is a diagram of a PICC and how it lies internally in the body... i hope the pictures at least familiarize you with PICCs enough to help you understand the rest of this post. (i hope). no worries if you don't, there is no quiz contained in this post.
the name "viral picc" stemmed from 2 sources - first, "going viral" is lingo for something catching on (usually on the internet) and nearly overnite gaining massive popularity. considering all that we went thru and the buzz that must surely have echoed thru the halls and behind the closed doors of BCCH, well, this new PICC practically went viral before it's conception. ha ha.
secondly, our whole family and especially parker have been weirdly entertained by a you tube video about "viral dog". click here to watch viral dog . it just really strikes our funny bone...trust me, i doubt few will find this THAT funny but we do. it's ok. we know we're weird. and we're proud of it. we raise eyebrows and elicit head scratching and blank stares where ever we go.
case in point: when parker went for his new PICC surgery, he asked the surgeon if he would be so kind as to give him raymond picc-aso once he had removed him because he would like to take raymond picc-aso home.
graham and parker said the surgeon looked blankly at them and then said, "ummm, i guess so. in all my years as a surgeon, that may be the strangest request i've ever had. i've never had anyone ask me that."
RIP RAYMOND PICC-ASO
we goertzens? we're medically weird trailblazers.
viral picc is 4 weeks old today.
we nearly lost him this past week.
last pic of Parker and Raymond PICC-aso
losing raymond was traumatic. replacing raymond with viral was a nightmare. the mere thought of losing viral is an undulating stresser....as much as we hope the need for viral picc will not be long - we would like him to stick around for as long as we do need him. we do not want parker to have to go thru another PICC surgery... and besides, we're running out of clever PICC line names.
parker waiting for surgery to install viral (in seattle)
when parker lost raymond, we tried to balance the down side and upset of that with looking for something positive to focus on. after all, raymond had been a pain in the butt right from the start. he never stayed in place. with every weekly dressing change, he would inch his tubular body further and further out of parker's body. a PICC can only migrate or move out of it's point of entry in the arm before it is rendered useless. ultimately, in the end, raymond's persistent pushiness and uncooperative behavior caused his demise.
we hoped that a new picc would be less pushy and more co-operative. that it would hang tight and stick closer than a brother.
parker with nurse karen in OR (in seattle)
secondly, as awful and upsetting as it was to not be able to obtain a PICC replacement in canada at BCCH, the "up-side" was that a USA born PICC meant that we could choose a different type of PICC. BCCH only uses "open ended" PICCS. i am not a fan of that type. in my opinion, the open-ended lines tend to be more prone to blood clots.
parker in OR about to meet viral
unfortunately, life is what it is, and viral picc has been just as unruly as raymond. viral is just as pushy as raymond and this has made weekly dressing changes incredibly stressful. and b/c of parker's weird vein anatomy, the surgeon ended up having to use an open-ended PICC.
parker's xrays and crazy collateral vein anatomy
at barely 4 weeks old,
viral's already developed his first blood clot.
when the nurses come to do the dressing changes each week, they aspirate viral. this is done by attaching a syringe to viral's pressure cap and drawing back until blood return can be seen in the external part of the PICC line tubing.
blood return is good.
no blood return is NOT good. it can be a sign of something as benign as the patient being a little dehydrated or indicative of something a little more sinister such as a blood clot.
we were all hoping that dehydration could be blamed. viral could still be flushed (meaning meds/saline would go in) so we new there was not a total blockage (which would have meant an immediate trip to hospital) so we were very hopeful, viral picc was just throwing a little tantrum and the lack of blood return could be blamed on dehydration.
our nurse felt it safe to give it 24 hours and would return the following day to give it another try.
the following day arrived and with it the nurse
no blood return.
that which we dreaded most and had hoped not to hear was said, "i'm sorry, we need to send him to the hospital."
parker was in tears and mad. he is so tired of dealing with all the additional complications. more and more, he's been vocalizing his dismay and bewilderment, "isn't it bad enough that i have lyme? why does all this other stuff have to keep going wrong?"
i don't have an answer for that.
i am struggling with those very questions myself.
it was a long drive to the hospital. stress and anxiety hung heavy in the air. parker sat in stoic silence, tears quietly rolling down his cheeks. graham and i tried to reassure him. awfully hard to do when one's gut is in their feet and a lump of tension is in your throat. given our situation and based on prior experiences, we never, ever assume that care will come readily or easily.
we arrived in the ER. and then waited to be seen. canucks were playing. only one TV in the waiting room. the problem? it had been commandeered by a toddler watching sponge bob. the solution? we knocked out the toddler and flipped on the game. ok. kidding. the kid got called in. no toddlers were harmed in the pursuit of hockey viewing. game provided some welcome distraction and helped to pass the time - until the canucks started getting creamed...
fortunately, we were not subjected to their further demise as we were saved by the nurse's call.
a nurse and doctor came in to talk with us. i explained to them that our home care nurse had sent us to the hospital because she suspected that parker had a blood clot in his line. thx to the whole PICC debacle with raymond, our home care nurses have a better understanding of exactly what we face and had called the IV team to let them know that we were coming. the IV team knows all about us...and was wonderfully supportive thru our last ordeal. they know that parker has a new PICC.
once we were finally called in, i naturally assumed that the nurse that came in to see us, was one of the IV team nurses. we were a little caught off guard by her grumpy and unfriendly demeanor. she flushed parker's line and declared nothing wrong with it.
i was slightly bewildered by that as our home care nurse is the head nurse for our city. there is just no way she would have sent us down there without good cause for concern.
i cautiously re-iterated the reason for us being there.
"no" she said, "if there was a blood clot it would cause a total blockage and i wouldn't be able to flush his line at all."
keep in mind, the doctor is standing there listening to all of this.
"well, our home care nurse is concerned. there is more resistance in his line when she flushes it, his IV fluids are not running as easily and she has been unable to aspirate." my heart was pounding in my ears.
"what? you don't aspirate picc lines! we never aspirate picc lines." she scolded.
ok. super awkward. i didn't know how to respond - here is the thing i've learned that PICC care protocols do vary city by city. so, this could very well be the case. however, i also know our home care nurse is an IV educator...and i know she has been in dialogue with the IV team at BCCH in regards to parker's PICC care and at this point, i still thought that this nurse was one of the IV team nurses...so i was totally confused that i was getting such conflicting information.
"it flushes fine for me. we don't aspirate piccs. you can go home." she dismissively said
none of this made any sense to me - i didn't want to offend this nurse nor question her expertise but i just had a gut instinct that this needed to be pushed. i was not leaving without further investigation. period.
"well, our home care nurse is very concerned that a blood clot is forming. our understanding of why she sent us down here was because his line should be looked at and possibly TPA'd. if there is a small clot than she wants us to be on top of it before it causes a total blockage."
"what? TPA? you don't use TPA. TPA is a dangerous drug - we only use it in cardiac arrest or stroke patients." she huffed
oh lordy. i'm thinking was i hallucinating when our home care nurse explained everything to me? am i way off in my understanding here? i didn't think so. the open ended picc type is new to me, but i'm also no spring chicken here - i've dealt with 4 picc lines (b/n parker and i). i'm no nurse, but i do know a thing or two about picc lines.
and keep in the mind, the doctor is still standing there, taking this all in.
we were completely bewildered. but i am stubborn and i don't easily back down.
"oh my!" i said, "maybe i've completely misunderstood our nurse. i certainly don't want to introduce a dangerous drug to my son...however, i'm feeling worried and concerned and not comfortable with the resistance in his line. i KNOW that it is not running how it should be. is there anyway, aside from flushing it, to just double check that there is no blockage?"
this is where the doctor stepped in.
"well, that is reasonable." the doc said, "why don't we do an x-ray? sometimes piccs can move slightly out of place and that can cause problems."
hallelujah. the voice of reason. and the doctor was so super kind and sweet.
off to xray we went.
still completely perplexed by the whole thing. so odd. and i don't know what was more odd - that the nurse was so argumentative and unwilling to help OR that the doctor was so pleasant and willing to help!! usually the complete opposite.
wasn't long before it finally all made sense.
the doctor came back in. xray was back. there was something up. and then she went on to explain,
"my apologies for the ER nurse. we don't generally deal with PICCs in the ER. she was right in that they never aspirate PICCs - in the ER anyway and TPA is used in cardiac patients but the information you had is also correct. IV nurses do aspirate lines and they do administer TPA when there is a blood clot. i have now called the IV team. one of the nurses from the IV team will be down to see you shortly. if she determines that TPA is needed than i will write the prescription for it."
i nearly passed out.
i have to say, this visit was a positive one. nice change.
we absolutely LOOOOOOVED the IV nurse from the hospital IV team. she was wonderful! she already knew all about parker (in fact, she had been one of the very supportive nurses he saw during the raymond PICC debacle) as soon as she walked in, and we saw a familiar, friendly face, we were truly at ease...probably for the first time in the history of our hospital visits. it was total gift.
the x-ray revealed that parker has a kink in his new line, viral. part of what contributed to the demise of his old line, raymond (aside from being super pushy) was that he developed a kink too. argh! this was upsetting to hear - kinks in lines do happen according to our IV nurse, but they are pretty rare. to have a kink develop in 2 different PICC's in the same patient is even rarer. kinks SUCK! and with an open-ended line it means his risk of developing blood clots is higher.
parker is so super sick of dealing with weird and rare occurrences cropping up in his life.
the IV nurse was concerned that it was the kink causing the problems and not a blood clot. IF the problem was mechanical (re: kink related) than there is little that can be done...which means we were looking at losing viral. we nearly had a coronary...forget TPAing viral, i NEED to be TPA'd.
the other possiblity was that there was a small clot forming at the site of the kink. she said that she would administer the TPA and then we cross our fingers and our toes. if it works and the line could be aspirated, then the problem was stemming from a clot. if not, then it's mechanical.
the TPA was administered into viral. TPA is a high potency blood thinner that is able to dissolve blood clots. we told parker it is like liquid draino for viral. the TPA is administered with a syringe and only enough is administered to "fill up" the length of the internal portion of the line. it is than left inside the line for one hour. one can only hope and pray during that hour that it is working it's magic on the clot. when the hour is up, a syringe is attached to the pressure cap and the TPA is "sucked" (aspirated) out of the line. if it has worked than there should be blood return during this procedure.
it was a LONG hour.
the nurse returned, she attached the syringe, began to aspirate and we all held our breath....
BLOOD! BLOOD! BLOOD!
i have never ever thought i would be so ecstatic to see blood coming out of my kid!
we were all whooping and hollering and high fiveing...even the nurse! i turned to her and exuberantly blurted out,
"you are a bloody awesome nurse!"
ha ha. i know...totally inappropritate tongue and cheek...but she totally got my meaning and responded with a giggle,
"wow, in 20 years of nursing, i've never been told that! thank you...it's the best compliment i've ever gotten."
i love IV nurses.