A change of PEG

Pads is having a visit from the PEG nurse based in the community. He's been talking of pain in that area recently. Without much activity he's been putting on weight and so we'd moved to a lower calorie (1.5-1 Cal per ml) feed. PEG's are great as we can do a lot of self-care. He cleans the site himself and applies the hydrocortisone that prevents granuloma. However it has not had a decent review for a while. He still has terrible memories of the time the Mickey button needed changing. He got in a terrible flap of distress. We've talked it through this week though and he has clearly moved on, realising that the skill of the nurse made it a really quick and painless event - out with the old and in with the new. Even though he's right, it really wasnt much to get worked up about, this is still an impressive bit of reflection and maturing. Well done Pads!
The nurse says the Mickey has got a bit old. In fact we're supposed to check the 'balloon' which inflates with water keeping it in place regularly but we've not been as dilligent as we could have been...

Keeping on keeping on

Another day slips by, thankfully almost without incident. His midday collapse was less pronounced, possibly due to less activity in the morning. There was some consternation amongst the staff about the slightly high speed that one drug was infused but there were no ill effects. In fact, it opened up a good conversation with another of the consultants. They were saying that there are about three modes of behavior they see from people in our circumstance: 1. Believe, hoping against hope, that everything's going to be fine, 2. Block, keep head down and go stoically into a descent into misery, or 3. float somewhere between the two poles, enjoying the moment as best we can, knowing that time is short for all of us, and that there is still a chance of cure. For Al, working in a cancer centre makes it quite awkward just seeing the words '2nd line' on the treatment plan. But we learn from Nehemiah, a great Bible hero, that everyone can feel scared. As a mere captive servant before the Persian potentate Artaxerxes, he confesses, 'I was very sore afraid' when the King asked him why he was sad. No-one was allowed to be sad in the king's presence, but Nehemiah could not hide the overwhelming burden he felt for the state of Jerusalem and Israel. Instead of summary execution, the king took the astonishing step of sending Nehemiah to re-build Jerusalem at the kings' expense. A painted smile or stoney stoicism would not have melted the kings' heart...

Pads walked home from hospital across the park and enjoyed a quiet evening. We've set the enteral feed up again overnight as we think his appetite is starting to fall off a bit. At 40ml per hour, it should go through nice and slowly. Hopefully it won't alarm too much in the night, eg. which it does if the tube gets kinked.

Another day in bed

Pads was in bed all day yesterday again. He spent most of the time asleep, with the 'DS' coming a close second. He'll have to shift today though because he's lined up for the swine flu jab at noon. This sometimes produces a 'false spike' in temperature so we'll have to be vigilant. The night before was slightly bewitched by the feed-pump alarm going off. There seems to be a quite a bit ambient noise which is like it, at the same pitch. Only by listening intently for the regularity we're familiar with can one relax.