Hi guys, what a week we've had!
I was right about needing time at home after the Flu jabs - Coo was poorly, he developed a cough and a temperature and additional seizures kicked in too - not an easy one to cope with but on the plus side I was absolutely fine and thank God for that!
We waited it out a few days in the hope things would settle and it was just some effects from the jab, but...no - never one to do things by halves - Coo got sicker and the dreaded vomiting seizures returned so it was time for a rethink!
I'm always concerned when the vomiting seizures show up, we had a nasty bout of
Aspiration Pneumonia before and it really was the worst of times! These seizures just makes everything scarier and so much more difficult to deal with. The noise, the choking, the fluids, the rest...getting the picture Yeah thought so...enough said!
#Visit to GP 1
Our GP is a lovely guy, he's good with Coo
and he listens...so first things first, AED (Anti Epilepsy Drugs) are usually all over the place when Coo's ill and if they're too high (or too low for that matter!) things escalate so - bloods done, next - chest, he's prone to infection after Pneumonia and especially this time of year!
Everything seemed ok so we sat it out, stayed home and just hoped for the best - not really a good week.
#GP visit 2
Fast forward a week, things are no better, maybe worse so back we go!
Blood results are back...they're high, not toxic yet but too high! - safe range is 10-20 and Coo's currently at 25 - there's a concern
but and it's a big but! He now
has developed a chest infection and needs anti-biotics and this will all effect the drug levels too!
#Decisions, decisions...
Do we stick and see if they come down on their own? Do we reduce the doses and trigger yet more seizures? Decisions, decisions! I think that's one of the worst parts about caring, influencing and making decisions for another person and sometimes there really is no easy answer, you just gotta trust the judgement, hope for the best and hang on for the ride!
Caring sure is a roller-coaster ride at times and...it's never boring that's for sure!
We've talked it over and decided to wait for a few days and regroup - hopefully by then, we'll have caught a break and things will be back on the up!
Meantime, another week at home is on the cards.
To keep me sane I'll be soup making (this week it was creamed butternut and carrot!) and crafting and my passion...harping! Not the scolding, angry type but...the musical variety and judging by the photo, harpings been soothing people for the longest time! lol
Enforced time at home used to bother me, I used to feel hemmed in and kinda caged but as time has travelled along, it's easier and it
so helps we have an
SDS (Self Directed Support) care package in place. It means however bad things are I can still escape for a bit and more importantly - sleep soundly a few nights a week!
Onward and upward!
As my granny always said - "It's a good life if you don't weary"
so...here's to not wearying!
(((hugs)))
Maz x
