The nurse said he could have something to eat, but because they didn't know he was coming they didn't have anything prepared, so she brought him a bowl of soup, two scoops of mash with gravy and a bowl of custard. Let's say I was glad I took up some of Chris's Resource milk shakes up with him as he was starving. When I texted him in the evening and asked him what he had for tea he said a bowl of the same soup that he had been given for dinner, that was it. I was not pleased! I think the staff obviously have no idea of the nutritional needs of a MND patient, but I guess they can only deal with what is on offer. It was almost as good as the Deputy Sister in the endoscopy department last week saying 'Oh good, at least you are skinny, we usually have to work on stroke patients and they are usually fat' and that was in the waiting room in front of other patients. Insensitive and rude. MND patients are mainly skinny because of muscle wasting and the energy used just to function. It just shows that we can create all this awareness within the general public, but if the general medical profession aren't taught enough about MND, then the health of those with MND could seriously be threatened if they had to stay in hospital for any length of time. I can only go by this one experience of course. I only hope Chris's experience isn't the norm. I don't think we are ever going to get round the fact that MND is a rare disease and how do you teach medical staff about something that they may never, ever come across? I think this information should be passed on to the wards when MND patients are booked in. Of course it doesn't help that on two occasions now a bed hadn't been booked in the first place for Chris, even when it was requested by his consultant. It's hard to inform the ward then. It's not the nursing staff's fault, the logistics need to be better.
At least Chris will be home today.
Later in the afternoon Chris had a look at his tummy and saw this tube coming out of it, no dressing or anything to hide it away. I think it freaked him out a bit. He got quite emotional and said he hated it, hated MND, and hated having to have the PEG, even though he knew it was the right thing to do. The reality of this disease is s**t.
Chris was so bored too, even his copy of the 'Farmer's Weekly couldn't appease him. He really needs his dose of fresh air. His sister visited him in the evening, at least that passed some time and she gave Chris another of his energy drinks.
I'm glad this is all done now, Chris is sore, but in a few days he will have healed and hopefully accepted it better. The Staff nurse showed us how to flush the tube with water everyday until he starts using the feed pump at night in October, though she admitted she knew little about how to care for a PEG, not very reassuring ( all advice from those experienced with this will be gratefully accepted ). No one knows MND like someone with MND.
Oh I wish this bloody disease would just do one and go away, we don't want you in our life and I just want to bring my farmer boy back home. Thank goodness I am doing just that today.
