last wednesday, we got the news we didn't want. parker needs to continue with IV treatment. it's disappointing news and not what we had hoped for but we are not surprised. parker is understandably upset. he is fed up with taking pills and dealing with IVs. it's safe to say he's hit the wall. he has treatment fatigue and is battle weary. he has also spent the last 4 weeks having mentally arrived at the end of IV. he knew that it was a possibility that he could have his PICC pulled and be done with IV. he is having a very difficult time coping with the knowledge that he now must continue IV...and most likely get a PORT to boot.
since IV treatment needs to continue, we naturally assumed that we would need to rapidly move forward with getting parker's PICC replaced with a PORT. we immediately began trouble shooting where in the USA we could have it done and then how best to make arrangements for that to happen in a timely and the most cost effective way.
first order of business was to touch base with the surgical team that put in parker's last PICC. (the ones that discovered his collateral veins. based on his vascular issues, they did not think his PICC would be viable for more than a few months and recommended that his new PICC not be left in long term.) we wanted to know if we could have parker's PORT surgery done at their clinic or if they could recommend a surgeon that could. additionally, i was concerned that the collateral veins and subclavian occlusion could potentially complicate a PORT surgery.
i was put thru to the vascular nurse who assisted with parker's PICC surgery. she clearly remembered him...who can forget the ORDEAL that poor kid went thru. she definitely confirmed that parker's collateral/subclavian occlusion could potentially complicate a PORT surgery. for this reason, his PORT surgery should be done in a hospital setting.
in passing, i remarked at what a shame it was to have to lose this PICC - especially since, aside from the few issues we had with it in the first 6 weeks, we'd had absolutely no problems with for the past 2 months.
"hold up," she said, "no problems?"
"nope. no more blood clots. no more lymph drainage. aspirates perfectly. runs no problemo"
she then surprised me by saying that his PICC might actually be fine to leave in ...but that we absolutely must get a venogram done. (a vein study) if a vegnogram revealed that his vascular issues were not worsening then it was actually advisable to keep the PICC in - and it could even be viable for another 4-6 months.
in fact, she went on to say that if his veins were holding steady with the existing PICC, that it could potentially be more damaging to his vascular system to pull the PICC and put in a PORT. especially, since the occluded subclavian vein means (most likely) a PORT would need to be accessed thru his jugular.
had't crossed our minds that the PICC he has could actually be safely kept in longer.
now, the challenge is to get a venogram done. again, this needs to be done in a hospital setting as parker reacts to contrast dyes. (a complication due to his mast cell disorder). obviously, it would be ideal to have that done here in canada. duh. if only it were that easy. this is a simple and common procedure. of course, all things pediatric go thru the children's hospital in our area. and well, we're all aware that help or assistance has not been forth coming from any doctors there. they have made it implicitly clear that, "as an entity they do not believe in the existence of chronic LD." - apparently stating something does not exist absolves them of any responsibility in managing or providing care either for the disease or anything treatment related. after all, how can you provide care for treatment associated with a disease that does not exist?
however, the IV team of nurses at that hospital have been wonderfully supportive - unfortunately, they can't provide any sort of care without a doctor's orders. regardless, i put in a call to them anyway. i updated the IV nurse on the situation. she was in complete agreement with the recommendations made by the american vascular nurse; that a venogram should be done and that keeping in the existing PICC was an option. she also stated that requesting a venogram (here in canada) was a completely reasonable request.
of course the challenge is scaling the enormous wall of denial in order to get a venogram done here. the IV nurse was hopeful she'd be able to find a doc to help. she said she'd try her hardest.
she got a big fat NO at every turn.
we have one last option left to try and obtain the venogram here in canada. we will be pursuing this avenue this coming wednesday. if we get another big fat no then we will journey to the USA. again.
we remain hopeful that some doc will say yes to the venogram.
whatever the outcome, we are resting in the knowledge that we can trust God to chart our path