So we have pushed enough buttons whilst in hospital and shouted loud enough and our neuro has now asked for the dietician to come and see us next week re the keto diet. Hurrah! When I asked him about the 6 months waiting list he just brushed it under the carpet.
We have had such a hard time getting heard in hospital. I had often hear horror stories (riven, your story about the Keppra dose always stays in my mind), but had no idea just how bad things can be. Just a couple of points off the top of my head
- one night nurse wouldn't give DS the sedative during the night that the neuro had asked for should he wake up as she "didn't think he would swallow it as he wasn't fully awake"( this is liquid by the way and DS even takes tablets half awake!)
-the following night another night nurse called a Dr at 5.00am again re said sedative - she turned up at 8.00am and of course it was too late to give it him.
Battled to get another EEG to be met by the rudest Dr I have ever met.He was so rude to us we are putting in a formal complaint once we have finished this lot of stays! Basically accused us of wasting their time and that he could see no evidence of absences (our consultant, the SHO plus all the nurses had pushed for another EEG) DS just happened to cry all the way through the damn thing!
It just goes on. DS wet his bed twice one night. One of the nurses stripped the bed, dropped his wet PJs on the floor saying "Oh its a shame we dont have a washing machine any more." Not so much as a "Do you need a bag for those" Then went back to Facebooking
Sorry, am rambling. Have just come home after two days there. DS still in and had a very challenging day.
And some poor girl has been waiting for an MRI since Wednesday night - been home twice, promised today but then they cancelled again
But there are some fab nurses on DS's ward (well, three out of the whole team!!_)