The need for feed

After a bit of a trial last week, and we've discussed it with our nurse, we're putting Pads on a 'see-food' diet. Basically the Jevity (liquid PEG feed) was not really agreeing with him. So tonight it's another battered sausage for tea! The only thing we have to keep an eye on is the fluids.
It's been quite busy in the house with Ann, the play therapist visiting (and getting soundly beaten at Uno), the tutor (who watched some DVD with him), and Jane, as well as a few others. I was buried away in some urgent marking most of the day.
We've been taking quite a few calls and messages following the update I posted on Saturday night. Thank you for all the interest and concern!
Thankfully the pain has been kept at bay so that he's not needed any more breakthrough pain relief and we have plenty in stock in case it does come back. There will be another 2 days of this dose of steroids and then he'll have to be brought down off them in steps again. So he's thinking positively about going to 'Hanes' (History) on Wednesday and even the LATCH Brain Tumour Support Group meet on Saturday afternoon.

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...