No.211. 'District nurses etc.'

OK, the district nurse came and said that Chris didn't show any signs of pressure sores at the moment, the pain in his foot is more to do with the swelling and his dropped foot. Hard to explain, but I knew what she meant. She did say though that Chris was at risk of pressure sores, especially on his elbows and heels, so this afternoon another nurse came with a blow up wedge for Chris's feet in the bed and blow up arm things to go on his wheelchair. They also brought the silicone pads for his elbows, but the special tape has to be ordered to fix them in place. I have also contacted the wheelchair people to see if they can change the arm rests.

I also heard back from Plymouth and we have to go back tomorrow for Chris to collect a cough assist machine, he was told however to return the NIV. We did chat about things and Chris, at this moment in time, has decided that he does not want a trachaeotomy ever. If NIV is not suitable then what will be will be, we had a few tears over that decision I can tell you. He did not want to be kept alive while the rest of his body is dying around him. As much as I want my darling boy to live forever, I do not want that for him either, though I would support whatever decision he makes and if he changes his mind then I will support that too.

Oh all this travelling is a pain, necessary, but a pain, I just hope the cough assist will do the trick with this mucous build up. All this suction and gagging is wearing him down.