Hi folks. Just wanted to say, we're home .. and thank you so much for all the messages on this and Ellbell's thread.
Little DS (Alex) is fine but I have no idea how I am ever going to relax again! We are getting a baby monitor with a camera/screen asap.. then maybe I will go back to sleeping in my own bed! Slept on floor next to him last night even though we bought a normal baby monitor on way home from hospital yesterday. Not enough to make me relax it seems.
I don't know how any parents whose children have or have had siezures cope. If there are any reading this, please give me some advice if you don't mind!!
The scariest thing, which I keep replaying over and over in my mind, is that poor DS has probably been fitting away alone in his room for some time when I found him!!! Nothing like it had ever happened before despite his CP and other problems. The rectal diazapam that the paramedics gave at the house had no effect!! They gave him other stuff in the ambulance with little effect and were trying to radio ahead for more advice but the radio wouldn't work! Luckily, with oxygen, he was maintaining his SATS ok.. thank God.. because in total the fit lasted at least 2 hours!!!!!!! I kept thinking in the ambulance that we were going to lose him. Turns out that DH, following in the car with DD, was thinking the same and he never thinks that way.. even when DS was newborn and really in SCBU! Ialso thought that if he made it through, there was no way he could come round from a fit like that and still 'be Alex'. But he is. Thank God.
DD (age 6) was a star.. she was crying and terrified because she had seen DS fitting.. but she did exactly as I told her.. got herself dressed and sorted and went up the road to the end of the walkway (our road is a funny shape and nobody can ever find us) and jumped up and down and waved her arms over her head so that the paramedics saw where we were straight away!! I am soooo proud of her.
At the hospital they gave DS so many drugs that he slept for the rest of the day. They were doing constant obs on him and I was terrified he wouldn't wake up or that if he did he would be damaged. It was a nightmare. By the next day he was awake but very unhappy and the whole time he was in he had IVs three times a day/night which took 2-3 hours at a time and which he fought the whole time which made him even more wiped out. I had to hold him in a death grip!! DH and I both stayed the whole week.. we managed to arrange care (best friend/mum/sis) for the other two because it was obvious they needed both of us at the hospital and not just for the IVs. DS has many needs when well.. he was a million times harder to handle ill.
They have done so many blood tests and put so many lines in that he looks like a pin cushion. He is covered in bruises and scabs! He has had a CT scan which was to check for tumours/masses/bleeds which may have caused the fit.. but all clear thank God. The EEG was clear as well although I know this does not mean he does not have epilepsy. Now he is home is on so many drugs. We have to soon start weaning him off the anti-seizure drug they put him on initially (Phenotoin) and gradually work up to a max dose of the one he is going to stay on long term. (Epilim.) He is going on all the drugs straight away because of the CP which so often goes hand in hand with epilepsy. And I must admit it makes me feel a little better that he is.
Thanks all for caring. It was lovely to read all the messages, thanks to my sister and Ellbell.
SJ x