EB today- otis this time.
Went over to Dads to help with new fridge freezer delivery and to accompany him to urologist. When I arrived he was in pain re his catheter . Called district nurses who advised some changes and pain killers helped a bit. Fridge freezer arrived but couldn’t be lifted into position for 4 hours! Dad no better after an hour so called nurses again who came out to see him but couldn’t change catheter as there was blood in the catheter bag. They advised A and E or waiting for urology appointment and hoping they could deal with it. Dad wanted to wait for urology even though in pain. When we arrived he was seen a little earlier as i explained he was in pain. Urologist confirmed he needs a long term catheter unless he is suitable for and agrees to surgery. Thought we were going to have to go to a and e to get catheter changed but they managed to get a nurse to come down to the clinic and do it. Dad was immediately much more comfortable - the nurse thought there had probably been a partial blockage and also maybe an infection so after a bit of chat urologist agreed to issue a prescription for penicillin.
Got home and waited for G to come and help lift fridge freezer into position. It was a struggle but we managed it in the end. He and C saw consultant on Monday. He said he had no diagnosis as yet , though could be after effects of pneumonia. Decided to have an MRI - C not happy about it! Exhausted when I got home about 7.30