so I’m very pleased to say that jacksons episodes are not seizures, they are just like them. Neuro have said that what they think is happen is he is having pain (we don’t know where from) which brings on the screaming episodes which then causes Jackson to breath hold and effectively, pass out – which is what is causing these really deep sleeps as it is taking him ages to recover from.  The one today he was out of it for about 4 hrs afterwards.

His heart rate dips really low which is scary for me to see because he is normally on the higher end. He has had a ECG which has shown normal heart rhythm but the spiky lines have taller bits then they should be this could be caused by an enlarged chamber or by him been skinny and the sticky pads been closer to his heart (hopefully it will be the latter!)

Anyway, cardiology are coming over from the Freeman (the heart hospital) to check him out hopefully today and depending on what they say will depend if he can go to theatre tomorrow for his central port.

As always when he is behaving he is laughing and smiling and been very cheeky – he will get over this hurdle like his has the rest.