To put my mind at rest I decided to dial the 111 service and I asked to speak to an out of hours district nurse. I spoke to a doctor first and he agreed that we shouldn't have been sent home with out information and contact details for a PEG nurse. A District nurse rang me a little while later. I explained things again and she started talking me through the cleaning of the PEG etc. She asked me if I had any gauze or gloves, I said no, all they gave Chris was a syringe and a bottle of sterilised water. I said I had been washing my hands thoroughly and then using an antiseptic wipe as I couldn't find any gauze in the shops. She said that wasn't ideal as it would probably sting, but to use them till they come out. They will bring out extra syringes, gauze and gloves and then set up a regular order for Chris. I told her about the oozing and she said a small amount is normal, but that it can burn the skin, so Chris may need a barrier cream. She will show me how to undo the white part of the PEG next to the skin and clean it properly and to 'plunge' it, still a bit confused and scared about that bit. People have told me about this, but I still haven't a clue how to do it without being shown.
Apprently there is only one PEG nurse for the whole of Cornwall. She is based in Bude which is two - three hours drive away. There used to be one based in Helston, but she also looked after stroke patients and the work load got too much so they took the PEG work off her. The DN said she is brilliant with PEGS and will try to get her to come and see us if she can. I did feel a little more relaxed after I spoke to her and hopefully there won't be any problems with them turning up today. Chris also has a visit from the physio this morning, so yet another MND themed day.
Despite how it seems Chris and I do have a laugh, though he tells me off if I make him laugh at the moment because it hurts. He was wanting to write his diary yesterday evening and he said he couldn't think what he had done during the day, so I said that he ate his breakfast in the morning, his lunch during the afternoon and his tea during the evening. We both laughed, because that literally was true. He is so determined that he is going to eat what he used to eat, even if it is soft or puréed, but it takes him so long and he really is spending most of his time eating. I'm not sure it's funny or good really, but it did make us laugh. It will be good when he starts his night feeds as that will take the pressure off the eating during the day.
This disease is hard enough without the added stress of those who can't do their jobs properly or lack the necessary knowledge. Without the help of people who are/have been through this, we would have been left high and dry and in the dark. I shall write and complain, have no doubt about that. I hope Chris is glad that he has me in his corner, because he is so laid back he is horizontal and wouldn't dream of complaining about anything. I used to be like that, but it's amazing what our protective instincts bring out.
MND is like a leech, it is sucking the physical life out of Chris and it is trying to suck the mental life out of me, but it won't work because I am not alone. We have wonderfully supportive family and friends, but I really want to thank my 'MND' family, where would we be without you.
