Last night, Nick was very wide awake, more animated than we have seen him so far, and very mobile. A couple of nasal tubes went as soon as the nurse left him to let us in, he is questioning his surroundings ( we ‘read’ his eyes, asked him what we thought he was asking and had it confirmed with nods and head shakes so we could reassure him). He is very scared and frustrated. He is not in pain at present, but had to be reassured that he is in one piece. However, he also responded to general conversation by very appropriate facial movements ( no mistaking the expression when we told him Alex had crashed the bike again).. and he is now wiggling both his fingers and toes… minutely, weakly but even so… on the paralysed RIGHT side. His left side is becoming surer and he can make quite precise movements with hand and fingers. He is stick thin, but retains a lot of physical strength… nearly breaking my hand while they reinserted the nasal feeding tube.

My son’s mind is definitely ALL in there at a level we could not have hoped, and he is fighting back. The connection between body and brain, however, is still appallingly fragile, and he his very scared, frustrated and desperate to move. It is the most heartbreaking thing in the world to see him imprisoned in his own body. Yet, he retains himself and there are even flashes of humour and the odd smile.

He dislikes the feeding tube and ‘informed’ us, in response to questions, that he is hungry and wants a beer…. Indicating he can hold it himself, thank you! He is fighting back with that stubbornness I told you about, and, it seems, winning another small battle each day.

I have faith in my son’s determination to beat the odds… the word ‘impossible’ has always spurred him on to greater effort.

My major concern at present is the lack of correct information that is being passed around with the lack of continuity in his care. His nurses had no knowledge of either the circumstances of the events which caused this, no medical history at all, even the past few weeks, and no idea of what he can and cannot do for himself at present. They did not even have an emergency contact number for me. This incorrect or incomplete information seems also to have been passed to Professor Wade, although I will rectify this when I meet him.

I have had no meetings with the team looking after him, in spite of requests, apart from questioning a doctor who was doing routine checks one day, and the feeling of the family who have visited Nick is that they are simply ‘babysitting’ until Nick can be moved to the next bed elsewhere.

We have been told that rehab doesn’t matter… it isn’t important if it doesn’t start for months. I feel this is the wrong attitude, as I’m very sure it is important to Nick who is fighting very hard to get himself back. I, with my very little knowledge and a bit of common sense, am working on instinct, here of course. But I know my son better than the staff here, and can see how hard he is trying. I understand that structured rehab will have to wait, but he wants to get on with it and there is nothing in place for him. I am getting to be a very demanding parent…For goodness sake.. he even asked for a pen last night to write what he wants to say.. though he has only a shaky left hand and could not do it ( we do not even know yet if he CAN write.. if the language centres will prevent his brain from using language in that way.. he may be severely dyslexic). The illegible scrawl we followed closely as he wrote… and though we could not read what he put on the paper, the shapes of the letters he appeared to be trying to put there spelled ‘love you’. I thought this was imagination… but the two others with us at the time also thought that, and when asked, Nick nodded.

Which crucified me.

He has indicated that he has a problem with his left ear and right eye. I have wondered about tinnitus and know the eye muscles are also affected, so his focus is out on the right.

We are very aware of the possible long term effects and damage we may yet have to deal with ( I’ve done a lot of research lately and picked the brains of a good many survivors, their families, and whatever healthcare professionals I can) and also, that we are at the start of a very long road. However, the stubborn little sod seems to be refusing to be beaten, and I would like to support him as much as possible in that fight. I just cannot yet seem to get ANY support in this from the hospital.. and the next person who says ‘funding’ to me is likely to get a mouthful.

I have demanded a meeting this week with his healthcare team.. not that he seems to have one..and unless I get some reasonable responses, I envisage headlines in the press ‘The miracle the NHS screwed up..’

Please continue praying for Nick.. he is so desperately trying and his mind seems quite clear.. he is suffering badly.