Jack managed to get home from school without needing more Midazolam. He was asleep when I got him off the bus so I thought that he would definitely sleep this one off. Of course, my wee man had other plans and even though he was asleep his breathing kept becoming laboured and his eyes were rolling as if the seizures were still breaking through but not enough to cause his body to jerk.
By the time Marion, Jack's carer, came in he had woken up and was bright for a few minutes but you could tell that he was going to have a seizure just by the look on his face.
I left him with Marion at 5.30pm but by 6.05pm she was calling me on my mobile to tell me that he'd had two seizures in quick succession and was onto a third and she'd given him his 3rd dose of Midazolam but it didn't seem to be stopping but that she would keep me informed. Ten minutes later she called again to say he was still fitting and I just told her to call an ambulance.
Holly and I had just met up with my dad for a meal and we were still waiting on my sister to arrive when I got that call so I just had to high tail it out of there, with Holly in hot pursuit. We ran into my sister on our way out and quickly explained the situation and arranged to meet up a few days later. I think the news had spoiled the mood and my dad and sis bailed out too.
Holly and I could hear the ambulance sirens as we ran to my car. That noise just strikes fear through my heart cos we have been in this situation so many times. We met the ambulance just as it was turning into my street and the lights were flashing but the siren was off.
It took only moments for them to assess the situation and then they got him onto the trolley, with a bit of difficulty as they couldn't get it into the living room. We had to bring his chair out so far into the hall and then four of us lifted him using his sling onto the trolley.
The I was running about getting his equipment, pyjamas, nappies, you name it and then Marion and Jack went in the ambulance and Holly and I followed in the car.
We were only in A & E for about an hour and then we were taken straight up to the children's ward. He had another seizure after he was settled into the bed and the nurses did all their observations. He was on oxygen and they were monitoring his heart beat and oxygen levels, fairly routine stuff.
Holly and Marion fetched Jack's stuff from the car, while I filled in forms and spoke to the doctors. While out Holly also phoned my dad cos in my panic and haste at the house I forgot a vital piece of equipment, the MAGNET! Luckily he has a key to my house so he was able to get it for me.
Emma and Mark came up for a quick visit and he did open his eyes for a little while but he was so exhausted. Emma kindly took Marion back to mine to get her car cos it was way past her finishing time but she really is such a star and I know she wouldn't have left until he was settled or til I was able to take her home.
They had only been out the door 10 minutes or so when it all kicked off and went into a prolonged seizure lasting nearly an hour. It was very very stressful but the doctors were feverishly setting up a drip to give him a loading dose of Phenytoin.
Finally, at around 10pm he seemed to be at peace and that's when I took Holly home going via the take away.
I am way past being tired but I am off to my bed anyway cos I have no idea what will happen through the night. Here's hoping the medication does the job, if not there is a few more they can try before we get transferred else where.
Fingers crossed. Now my bed is calling cos I am running on empty.