Well today was a day of frustration. Chris`s PEG was oozing around the tube, which may or may not be normal. I contacted Chris`s MND nurse to see if she could help with finding out who the PEG nurse was. Unfortunately she was out all day and could only find me the number of the East Cornwall nurse. It was around 5.45pm by then and I knew most people wouldn`t be available at that time anyway. I then rang Chris`s GP as there is a huge blister on his epiglottis, which must have come form the endoscopy tube and it is causing him to gag. She prescribed him an antiseptic spray which I collected, but I also asked her about a PEG nurse. She had no idea either, but said that Chris should have been referred on discharge and it would have been on his discharge form, which it wasn`t. He should also have been given leaflets on how to care for the PEG, yet again he wasn`t. She suggested I speak to the referring surgeon`s secretary to complain and get things put in place, which of course I couldn`t do today because they go home at 4pm !!
To say I am annoyed is an understatement. This whole PEG process has been a cock up from start to finish. I can`t seem to find anyone who can help us physically and will have to spend tomorrow trying get hold of the right person who can. Chris is his usual, laid back self, letting me get on with this while I am close to exploding !!
Just when I thought I couldn`t hate this disease anymore than I already f*****g do !!!
I`m swearing , I must be angry !!!
