As the title says,My gorgous brave little boy is back in hospital. I have posted a few times on here but never really got to know anyone. Harry is 2.5yrs and has a very rare epilepsy syndrome. He is quadriplegic, registered blind, unable to eat and drink and has gastrostomy tube. He can ahve up to 150 seizures on a bad day. Winter is always a bad time for him cos he gets a lot of chest infections. We took him to alderhey last week and they wanted to keep him in, but we pursuaded them to let us home with antibiotics ( we have spent the best part of a year in hospital in total-so if at all poss we like to be at home). well he is no better, we have been up every night for the last 4 weeks but last night was the worst. He was screaming and arching his back in pain and was inconsolable.He stops breathing regualry but last night we were suctioning him all night to clear his airways. This is not like him as he is always so calm and queit and never, ever cries. Took him back to alder hey and he is now admitted. He has a chest infection (his lungs are covered in white marks), urinary tract infection and a gastrostomy site infection, no wonder the little angel was feeling like crap. His temp is now 40 and he is covered in a rash from head to toe. So...dh is with him till 7.30 then i take over for the night shift. we dont leave him for a minite when he is in hospital.