the whole fluid on the brain thing (a type of intracranial hypertension - IIH) has had me laying low for the past week...not even been up to keeping up with my daily drama posts...i am responding to the specific treatment for the IIH and that is a good sign; my vomiting and nausea have dramatically improved ...but i am weak, drained, easily fatigued and dealing with some significant neurological stuff still...will update more specifics when i'm able...for now, i've roused myself from my bed long enough to put out the following prayer request...it is urgent
parker has not been well either (duh)...he is on a rigorous IV treatment schedule - he has IV infusions at 7am, 3pm and 11pm every day (add 2 more time slots if its a bad pain day and he needs iv pain meds) anyhow, i'm getting caught up with details that a fairly unimportant right now...the short of it is this - parker's PICC line (seemingly out of the blue) stopped working properly today. our home care nurse was at the house "trouble shooting" for over an hour earlier this evening. his line will flush but the meds don't (gravity) infuse and they cannot aspirate it (draw blood from it). his home care nurse sent him to the hospital.
graham took him to hospital and at the hospital it was determined that he needs to have a new PICC line put in....
it is rare for anything pertaining to parker's care here in BC to be easy or straightforward or come with out a fight...and even then, it has rarely been forthcoming... we are desperate for this surgery to be done HERE...pls pray that this will happen... graham had to be incredibly persistent with the ER doc but the doc did eventually agree to write the order for the surgery...do we dare hope? i don't know...i won't believe it until he's in surgery...nothing is written in stone yet...so we need prayer for repair -
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parker's 11pm dose of meds was run at hospital tonight with IV pump. graham has to take him back tomorrow at 7am for his morning dose. hopefully we will find out tomorrow morning if he will be scheduled for PICC surgery.
i will update as soon as we know more...it's gonna be a long nite...honestly, it's just all too much and twisted and i am tired of the fight and upset that i couldn't and can't be there to comfort parker. he is understandably very upset. he is so brave and has been thru so much crap. when is "enough" enough?
Hi! I have been semi-following your blog for a while. I am sorry you and your son are struggling so much! I know you are going some of the roughest stuff, I understand.
ReplyDeleteSaw your prayer request about Parker's PICC line and had to think, why don't you go ahead and have a port placed. Its obvious that his IV treatment is no where near over and a port is a great long term solution.
Anyway, I just had to put that out there. Just incase you hadn't thought of it yet. I hope that everything works out and that you will feel God's love surrounding you and your family. Blessings!!
hi lynelle
ReplyDeletethx so much leaving a comment - we are so appreciative of support... and your suggestion of a port. it is a good long term solution and we did consider a port but decided agst one for several reasons...
#1 we had to pay out of pocket and go out of country and couldn't afford a port surgery
#2 we are familiar with care & handling etc. of a PICC and we weren't sure if we'd be able to obtain any sort of nursing care for port once back in canada
thx again for touching base and for your prayers.