Chapter 584 - Making Mistakes

I do not like admitting failure, making mistakes and errors. Recently I have often omitted to restart the pump after replacing the cassette or when reattaching the pump following showers. On those occasions she sometimes realises the pump is not running or I have checked the status of the pump simply from habit. Yesterday was different; I forgot to replace the cassette while she was having her morning shower. By mid-afternoon her dyskinesias became vigorous, she was uncomfortable and to keep an eye on her watching TV (although she was disinterested in doing so) I set up a camera to monitor her. Late afternoon I found her asleep, unable to be woken. In checking the pump I quickly discovered the cause, the cassette was empty. There is no alarm to indicate an empty cassette, the pump continues to cycle, making its normal pumping sound.. This has happened before when I have delayed replacing the cassette near bedtime and the cassette has run dry just before I got around to its replacement. On this occasion she was in a coma like state so I replaced the cassette and gave a bolus dose before lifting her into bed. Later I gave another bolus and replaced her incontinence pants and re-dressed the stoma. Then as she was "waking" I transferred her back to the wheel chair to have a light evening meal of soup. She was disinterested in returning to bed until 2200 when she asked to lay on her side. Several times during the night I found her awake, her light on reading a novel.

During lunch yesterday she choked on a piece of what I call "sticky bun", a blueberry filled bun made of small scroll shapes that she eats with a little margarine, quite an effort to dislodge the gooey piece. This morning at breakfast the same happened with a crumpet covered in melted cheese. We will need to take extra precautions with dough consistency food stuffs which have not bothered her before. Only nuts, biscuits, fruit skins, chunks of meat and leafy vegetables have caused her swallowing problems until now. Everything needs to be "soft". Not much left is there?

The stoma continues to worry me. Several weeks ago the pump which has always sat over her stomach irritated the stoma by pressing against the white triangular gadget attached to the tube, probably because of her need to clean objects close to the floor and to pick up fallen items. A week ago I began protecting the stoma with a rectangular piece of non-stick dressing beneath the triangular gadget. The area around the stoma has remained irritated, so on Thursday I requested a nurse visit from Wild Dog Carers; the nurse came and late in the afternoon took a swab of discharge away for pathology. I rang yesterday wondering why there had been no feedback and was told to continue my procedure until Monday. Each morning I cover the stoma area with Glad Wrap sticky taped in place to keep the area dry during showering.

We once had a should harness bag for the pump that she found uncomfortable during the early days of using a Duodopa pump. Unable to find that bag I rang Abbvie for another; unfortunately what was sent were two standard standard bags so I need to call again. However, the helpful person had suggested a vest with a pocket attached for the pump and this she finds ideal and comfortable, although she does not wish to wear it all the time because she drops food on it. After several days of use I do need to wash it  so I will ring again and ask for another.

Last Tuesday she enjoyed her first Skype chat with a volunteer on the supplied dedicated tablet. Although I did not remain present all the time the exercise appears to have been successful.