So ... he’s back! I am trying to remain positive, we had 31 seizure free days which is more than double our 15 day record, so that’s something. If I had written this post earlier, as I had intended to, it would definitely be a ‘woe-is-me’ kind of post. I was devastated by it all. But H continued to have seizures so funnily enough there wasn’t much time to blog about it. I’m less upset now so hoping to retain something of a positive feel to my post. Ridiculous as it sounds, I am convinced it’s my own fault for talking about it in Little H’s presence or writing a whole blog post about how happy and excited I am! Almost serves me right for tempting fate! Silly, I know. (Thinking that I mean, not actually talking about it in the first place).
So, Little H had a lovely morning. The wonderful ladies from KIDS came out and created a little (removable) sensory wall for him. He loved it and all the hugs he got. And I was delighted with all the comments about how much he’d grown, how much he looked like a big boy and how much he had developed since they had last seen him. This afternoon I decided to take Cheeky to the library to return his books (which are well overdue) and strapped H into the buggy for the short walk round. About four roads away from us, lives a little old lady who lost her husband back in December. I’ve known her for a while, she’s the local lollipop lady and Mr. M and his dad used to have a pint or three with her husband. I met her at the hospital just hours after her husband died, we were there for a routine appointment, the shock and pain in her face was still blatantly raw. I’ve not seen her since then. Illness and childcare arrangements for H meant I couldn’t get to the funeral (Mr. M went) but as I passed the end of her road today it occurred to me that I’d not seen her for a while, so after a little hesitation that it might appear rude (I have never been to her house in my life, except to drop her husband home after the pub that is) I decided to go and visit.
Whilst there I could tell, I could just tell, one was coming. H was asleep in the buggy but he kept startling awake and had a strange expression before he fell asleep again. Normally I pray ‘not now, please not now’ for H or for me, but today I prayed for Una, the little old lady we were visiting ‘please not here, she doesn’t need to see this, she’s been through enough already’. My prayers went unanswered and Little H went on to have two seizures in her living room. They’re not pretty when they happen and have been known to upset the nurses on the children’s ward. They’re not overly dramatic and at first you genuinely wouldn’t notice anything was happening, but they progress quickly, and in the time it took me to un-strap him from the buggy and lie him on the floor he was already grey/blue in colour. All the while, I tried to reassure Una that this was normal for him, that she needn’t worry and that I had all the equipment needed to handle it. I then proceeded to breathe for him using oxygen and a bag and mask while waiting for the fit to finish. Cheeky, bless him, was playing with a train in the corner and took no notice. I prayed it wouldn’t be an ambulance job and at last after a minute and a half it ended and he finally took a breath.
Thankfully, I think my matter of fact attitude and forced calmness seemed to do the trick. Una was concerned but not overly so. She did, however, ask at least 10 times if he was okay, as he crashed out in his post-seizure state. Inside I was shaking and desperate to get home, but felt I should stay; ‘please let that be the only one’ and I tried to continue our conversation. Unfortunately that wasn’t the end of it – he went on to have another seizure. Again, I had to support his breathing with oxygen and a bag and mask. I thought it was probably time to leave. The trip to the library went out of the window! Thankfully, with a bit of bribery, Cheeky accepted that we’d be going back home and with lots of assurances that this was fine and everything was OK we left.
I was devastated as I thought about it on the way home. I’d called in to Una to see if she was OK. Instead, I had placed extra stress and worry on her. I cried. Not because I was gutted that our seizure-free reign had come to an end (although disappointing it was not altogether surprising) but because I had exposed an elderly lady to the horrors of H’s epilepsy.
His third seizure happened as I arrived at our front door.
When he’s going like this – seizure after seizure without recovering in between - we call it a cluster and have a medicine called clobazam to administer via his NG tube. It’s not an emergency situation yet – that’s when one seizure lasts 3 minutes, in which case we administer Midazolam.
Once home and his medication given he had three more seizures, each requiring oxygen, but finally after two hours he fell into a real sleep (as indicated by the change in his breathing – it’s calm and like a normal sleep rather than laboured). He has since woken and so far seems happy and relatively unchanged and is still practising his rolling! Yay!
I wouldn’t say I was the most religious person in the world. (Although I was taught by nuns and I class myself as a Catholic, I don’t go to mass every week). Still, when I’d got over the initial distress at what I’d done to poor Una, I began to wonder... why had I gone to her house today? Had I not been there, those seizures would’ve happened at the side of the main road. And that would have been awful to contend with, particularly as I’d have had to be concerned about the three year old Cheeky as well as Little H.
So, I guess the upshot is, it could have been an awful lot worse. H has woken and doesn’t seem dreadfully changed by the episodes and we are only in the early days of his ketogenic diet so there is still hope that it will have an effect.
I think the Seizure Monster just wanted to remind us it was there and is still a force to be reckoned with.
We’re not beaten yet though!