argh

[needmorecoffee]

dd had a massive status epilepticus this mroning. 2 farking hours, 4 lots of benzo's. She is in hozzie and will stay the night there.
shitshitshit

she's back home. Still a bit dopey from all the benzo's yesterday and the doc has upped her keppra. Bloody hospital didn't feed her last nigt so when dh chased up food was offered a sandwhich. He explained she can't bite or chew as she has severe CP and eventually she got a banana. Buts it not good enough. Imagine if we hadn't been there!
Apparenlty if you miss the dinner trolley at 5pm cos you have gone out or are having something done thats your chance gone. And children like dd who need 6 small meals a day cos eating is so hard are not catered for at all

Thats appalling NMC You should complain. I'm glad she's well enough to come home. How are you feeling today (other than furious with the hospital)?

that's really disgraceful

should call the Daily Mail shouldn't I !
I'm very tired today and a little bit down. DD was doing so well with no status seizures since last July.
I was so scared she would die yesterday that I think I'm having a reaction to the whole thing

glad you've got her out of there, sorry that their attitude is so appalling.

sometimes I wonder if medical people sevretly think disabled children aren't worth saving

I don't think they're that secret about it nmc. Everything is judged by 'quality of life' by which they mean a normative quality of life. Grrrrr.

That is absolutely despicable of the hospital to not even take a few minutes to check your dd's notes to see her needs and to not make sure she was fed properly. I would put a complaint in, your dd has the right to be helped.

and

She's a little girl FFS. And they can't even be bothered to feed her.

I will complain of course, but last time i complained - when they tried to OD her - I found out the ward manager told dd's consultant we were rude and aggressive. Which we're not.
And of course, we're at their mercy every time we go in there.

oh nmc the food thing might not beCP/disablist related as such; just general hospital crapness. When ds3 was in hospital he was on a gluten free diet but because we hadn't ordered it in 3 days in advance (not realising that he was going to have a seizure 3 days hence ) there was no food for him.

Its not only food, when ds2 was in hospital with an infection & on IV AB's & other meds his canula came out & had to wait hours for it to be put back in & then, his ab's had not been prescribed so we had to wait again - ended up 12 hours without meds - he would have been better off at home with oral ab's.
Although in 5 years of treatment it is probably the only time I have had a problem with the hospital.
Food is something so basic, they should care more - complain.

it does bug me that they don't supply food for children who can't chew. So the choice can be fishfingers and chips (where is Kamie Oliver when youneed him) or a jar of baby food. dd can't chew the first one and the second makes her gag cos jar baby food really is vile.
And they can't cater for needing 6 small meals rather than the set 3. And that is a disablist issue. Its generally disabled children who have chewig/swallowing/amount issues.

Hi NMC, I hope that your dd is doing a bit better today?

I'm sitting here shaking my head in disgust at how she was treated in hospital. They shouldn't be able to get away with that. I'm sure that they bank on parents like yourself to be too busy to do anything about it