It’s been a tough weekend.
Toby had a seizure in the bath on Friday morning and then another Friday evening after having his hair cut, he also had one on Saturday evening. They were all under 1.5mins but on each occasion he stopped breathing and went very blue so we gave him several rescue breaths to start him breathing before getting an oxygen mask onto him.
Toby had been seizure free for 8 days which is great but it means we get out of practice, fortunately we were both there for all of the seizures and can work as a team to get to him, get the oxygen and breathe for him as well as consider the next steps we might have to take.
He was out for less that 0.2% of his waking time but it’s terrifying and it set us on a self destructive path of nervousness.
We never let him out of our sight but this weekend has been worse, we’ve made sure we were close to him to catch him if he fell (on Saturday he went face first onto the patio when the seizure started) and have jumped at every twitch or spasm his body has made.
Emotionally this is the toughest for us, we are crippled by fear of what might happen, and when/if it does how far it will go….will he stop breathing? Where’s the oxygen? Will he need rescue medication? Will we need an ambulance? Will he end up in hospital? What if it doesn’t stop? We’re always very aware that it was only a short time ago he was in a coma in Intensive Care, we know how bad it can be.
Weirdly, having been there before makes it a little better, we know what to expect and how it will happen but it doesn’t stop it being a scary thought.
We’ve kept close to home, not really doing anything, just watching Toby and letting him play. We were brave and walked to town for some shopping but when the idea of a pint was mooted it was quickly rejected, too risky.
We like our own space, we’re safe in it, we have our routines, plans and procedures for when the inevitable happens but it makes us self imposed prisoners.
As Toby has been on good form we were due to take him to see my god-parents on Saturday but felt too nervous disturbing his routine and of course being away from home, it turned out to be the right decision.
It’s also tough on friends, they have to come to us more than us to them which isn’t fair, what’s worse is when they witness seizures and sadly end up feeling bad as they can only sit back and watch as we need to do what we have to. We feel bad abandoning people but also for the situation making them a spectator to something unpleasant to witness.
By the end of the day and bed time we’re exhausted, living on edge is tiring, constantly alert to every nuance of Toby’s body, looking for signs and continually planing and thinking is all consuming. People say we should try and relax a little but it’s hard as we know what is coming and what we’ll need to do and that’s impossible to ignore.
Maybe we’ll get better at it over time?
For the moment, it’s days of sitting and watching as life sails past while we’re on edge.