Update on Paul's current condition

Since last year Paul has been in hospital three times as a direct result of encephalopathy. We have had to give up our jobs and I am now his full time carer.

Usually, when his symptoms start its a case of getting him admitted to hospital as quickly as possible. His GP visits him at home, runs a couple of diagnostic tests on him and then if he considers that his life is in danger he will admit him.

One of the tests is the simple "clock" test. Paul is asked to draw a clock face and put the numbers around it in the correct order. Easy enough for you and me, and also for Paul when he's normal, but what he actually does is put all of the numbers in one quarter of the clock at random. Sometimes he doesn't even bother with the numbers - just a load of lines and squiggles.

The other test is to see if he can hold his arms outstretched in front of his face and keep his palms facing out. Again, a simple task, but if his hands can't stay palms out, then he's probably got the disease. They call it the "flap" test.

He's been ok since November which was the last time he was hospitalised. He was admitted and discharged within 24 hours, and then I had to have him admitted again 2 hours later. The problem was that the hospital doctors seemed to assume that he was drunk rather than encephalopathic, so they just kept him under observation overnight and discharged him the following day.

I went to the hospital at visiting time expecting him to be hooked up to intravenous drugs etc only to find him sitting in the hospital waiting room. He had apparently been there for four hours waiting for me to come and get him. No-one had bothered to call me. He was pleased to see me and asked me where I'd been. He was like a child on Christmas Day! It was not my Paul.

I knew straight away that he was far from well, but when I challenged his discharge I was told by the sister on the ward that the doctor felt that there was nothing wrong with him.

We walked down to where our car was parked and Paul tried to climb into the boot of the car. It was obvious to me that he was far from OK. I telephoned his GP who advised me to take him straight back to Accident and Emergency and insist on him being re-admitted. I think I've mentioned in this blog previously that his condition is such that if he doesn't get immediate treatment he could got into a coma and die, and as such I was absolutely livid with the hospital doctors for discharging him without giving him any treatment!

After about four hours I finally persuaded the staff at the hospital that they should re-admit Paul, but this was under protest from the staff who were adamant that there was nothing wrong with him. The next day they were proved wrong after having taken a good look at Paul, and he remained in hospital for another three days until his condition had improved.

As I write, I am again confronted with a dilemma. Over the weekend Paul started to display symptoms of encephalopathy again. Drowsiness, confusion and loss of spacial awareness together with incontinence and aggressive behaviour.

Strangely though, he appears to have picked up again without any medical intervention. This has never happened before and I have to admit to being slightly suspicious. Normally, it just one way - downhill rapidly! At present its as if he's hovering on the verge of it, but not quite there yet. I'll be watching him closely for the next few days just in case he takes a turn for the worse.

Thanks for looking and hopefully I'll be back blogging again soon. One of the reasons I haven't been on here for a while is down to my new business venture. If you would like to see what I've been up to by all means pay a visit to www.myteamshirts.co.uk and let me have your comments.

Speak soon!

Chrissie