So, we had to give the boy a Midazolam dose (his emergency medicine if a seizure goes on too long or he’s having cluster seizures) on Tuesday evening – fine, he averages two weeks inbetween doses and that was about 13 days since previous dose.
But then the next morning he was clustering & I had to give him another dose at noon. Phoned the hospital as that is two doses in 24 hours but as usual they said to stay at home and see how he is when he wakes up.
So he wakes up after four and half hours sleep and has couple of seizures. Right, I think, this is just him waking up and a bit hungover from the medication. Then he started to cluster, then he started to manically cluster so we had no choice but to take him into the hospital.
The nurses and doctors were lovely BUT it was really difficult as they are use to seeing a child come in having a (probably one off) seizure, gets medicated and that’s that. Samuel has seizures every day, it doesn’t work as simply as that for us unfortunately. The doctor would look at him twitching (I say twitching, it was seizure activity we know that) and want to medicate before it escalates and we had to keep saying that it might not escalate, this was normal for Samuel and we don’t medicate him on every little twitch.
They think, after many questions (to us, asking Sam would have just been silly) and prodding and poking that he had a virus of some sort and that was making his seizures so much worse.
The amount of medicines that went in that poor little man in such a short space of time is quite scary. I’d given him Midazolam at noon on Wednesday, then the hospital gave him another dose at 7.30pm, then at about 11pm he was given Paraldehyde up the bottom which stank the room out, that was useless and didn’t work at all so they gave him another dose of Midazolam. He then got another dose of Midazolam at about 5pm (they were alarmed that Midazolam was wearing off so quickly). Then at about 8am they gave him phenytoin through a cannula, not sure quite whether that made a difference but then by 9.30am he was given lorazepam which worked beautifully.
When we came home last night (Friday) he was fine until we got through the door and then had a seizure…he was then really unsettled until when we gave him his usual medicines and then his sleepy drug (Chloral Hydrate) just before his over night feed started.
Our morning today started at about 3.30am with a very unsettled and crying little boy, baby paracetamol didn’t seem to make much difference and he just carried on crying throughout the morning until I managed to get hold of his doctor (thank goodness he was on call) and he advised to give him another dose of Chloral Hydrate to settle him. He said that Samuel may have withdrawl from all the medicines he had and still may have some of the virus leaving his system which may be making him feel awful. Chloral Hydrate has done the job perfectly. I am typing this looking at a beautifully peaceful and snoozing baby…big sighs of relief all round.
Going into hospital was a massive shock for us. We spent 8 weeks in Neonatal after Sam was born and have been home 10 months and been so lucky that we’ve not had to go back in like this. It frightened us. We worried and I guess still do that this was going to become more regular, it was going to be ‘normal’ for us to come into hospital like this. It made us think about what we’d do if we lost him. When we lose him. He is our absolute world. Words can’t express how much we both adore him. Our whole lives, our whole world revolves around him. I can’t imagine a world without him.
We both had a cry last night. We are often told how well we are coping (which for some reason drives me nuts), but people don’t see us when we crack, when we break down and have dark, dark moments when we think about awful things and I torture myself with the guilt that I gave this condition to Samuel. I’m a carrier and I passed this (obviously unknowingly and I know of course none of this is my fault) on to him. Something in me made my boy, my angel so poorly.
BUT we made a pact. We will of course have down moments, we can’t help it, but we aren’t going to waste valuable time with him dwelling on it and are just going to carry on as we are enjoying every moment, every bath time, every cuddle.
We will continue to enjoy every single damn second with our beautiful boy and no hospital visits will dampen that.