I had hoped originally that Noah would return to school full-time with staff able to easily manage his ileostomy so that I could sit around at home drinking coffee or go gallivanting around having a great time (or just get on with ordinary life including massey study) - this was always a bit of a fairy tale but it's good to have dreams.
Anyway with the trouble we're having with the prolapsing full-time was obviously not an option so I kept the date with the teacher on Monday to explain things taking Noah along and we talked about him maybe doing two hours a day between 11.30 and 1.30 thus avoiding playtimes, mainstream rush around time and PE sessions. However the faces of the teacher aides really said it all when we discussed emptying bags and showed the photo explanation of bag changes. This is where we were back in December so can't blame them. Two of the least squeamish teacher aides said they would do bag emptying but would call me for anything else.
This uneasy situation soon resolved itself though because as we left the school grounds (about 200m walk from our home) Noah said his stoma was hurting and by the time we got home it had prolapsed quite a lot and was quite hard to reduce.
This meant he was obviously not going to cope with any moving around and needed to stay invalid like at home so I phoned the school next mornign to wsay he would not be coming in after all.
Yesterday he did quite well during the day - moving very little and cooperating slightly with my attempts at home-schooling. But just as we were to leave for a BBQ! for our home group the stoma popped out and became quite purple and oedematous. Paul managed to reduce it and we went (perhaps not a good idea but we want some semblance of normal life) to the BBQ. While there it came out three times needing frozen peas to reduce it the final time and leaving a bag full of blood and mucous). Once he was in bed lying flat and then asleep it was fine - although we were not quite so fine and checked it a few times!
Today we are working on keeping Noah almost completely quiet - I've told him he's in hospital but at home so musn't move much and Paul is going to talk to the surgeon and see if there is any way we can hurry things up in Wellington as obviously this situation is not sustainable.
Noah is pretty well in himself, although a bit subdued about the thought of needing to go back to hospital if we can't get the stoma in.
I had said to him we might order a special book just to keep in his hospital bag (we now have a ready packed bag for him and us!) and when I next looked at the computer the book had been ordered from amazon.co.uk by Noah (this is what happens when you have a one-click order system set up with amazon and forget to lock your computer) so we are now ordering the epic mickey photo book (an American book) from amazon.co.uk at twice the price it would have cost from amazon.com!! At least it shows Noah is still well!
Isaac was really pleased to be back at school and went roudn hugging everyone. At the moment he is tryign to copy almost everythign we say which is really sweet and it will be great if it ends with some understandable words he can use spontaneously.
143 days....Weird Goal, huh?
5 days ago