The palliative care nurse came yesterday, she visits Chris once a month and is lovely. When we first heard a palliative care nurse would visit Chris I was a little shocked. Surely palliative care was for people who are dying, but then of course I realised that he is. The whole of the team are there to offer palliative care, to make sure Chris's needs are met as the MND progresses.
Angela looks after any medical needs Chris might need. She wanted to know how the visit to the respiratory doctor went. She knew about his referral to Chris's MND nurse and the prescribing of molazapram for the laryngeal spasms he is getting. She felt a higher dose of lorazepam might work just as well and is going to talk to the team, maybe even Chirs taking it daily.
She also asked if the doctor had mentioned any other kind of interventions. I think both Chris and I knew what she was going to say and although I thought the doctor might mention the ENT team, he didn't. He also didn't mention that Chris may have to have a trachaestomy one day and that was what Anglea was trying to bring up. It is possible that if the spasms get worse and the medication doesn't work that the only way of saving Chris's life is a trachaestomy. We have discussed it. Chris wants to live, he wants to be resuscitated so if he has to have one so be it. Angela is going to get a referral for him to see the ENT consultant, just to introduce him to him/her, so they are aware of Chris, yet another thing to take on board along this perilous journey.
Chris was listening the to The Archers the other evening and they were were out in the fields eating pork pie with egg in the middle, pickled onions and ham and tomato sandwiches and it made Chris really fancy them. He recited the list of foods to me lustfully. The way he was describing them, you would have thought he hadn't eaten for a week, oh... wait a minute.....he hasn't hardly eaten since Easter Saturday to be precise. He was laughing about it, but seriously my heart broke for him. My poor boy can only eat a couple of Lindor chocolate balls a day now. It is hard to imagine isn't it? The only thing keeping him alive at the moment are bags full of liquid feed being fed direct through his tummy wall into his stomach. I have no idea sometimes how he keeps smiling. He actually jokes that this beef farmer is now a vegetarian!
On another countryside note, we were going to visit the Royal Cornwall Show on Friday. We haven't been for a couple of years and I thought it would be nice to go, there will be lots of tractors etc, plus farm animals and horses among other things. He still has an upset tum from the antibiotics and I think he is also a little scared of the throat spasms. If it is dry it will be very dusty and I think he is a little scared of having one while we are out. It is a longish trip for us and it will mean being stuck in traffic for ages too. I don't mind either way, we'll see. He has had a couple of spasms today and I had to give him a lorazapam, (we are still waiting for the other medication to come in). It did settle him eventually.
Jeez I hate this disease so bloody much, people not touched by it have no idea.
