We woke this morning to a leaking bag of Noah's - it's a good way to get us out of bed when he comes close!
As it had been on for nearly 48hours we didn't worry too much but gave him a bath. We had none of the convex bags left just a collection of big and childrens bags (until supplies open again after the holidays) so used one of the big bags. About two hours later Noah told us it was leaking - he was right and that meant the second change of clothes for the day along with all his sheets (its a bit like laundry for a newborn all over again). With another big bag on we went out for his choice of first time eating out to McDonalds. After his food he wanted to play on the playground, Paul checked his bag first and it was leaking again. Noah was determined to still play which was obviously impossible, so although we felt very sorry for him as havign the ileosotomy is impacting his life so much, he had to be dragged out of McDonalds in the end by Paul and I displaying his bag and stoma to all as he struggled making his t-shirt lift up. We came home (as we certainly do not yet have the confidence for a bag change in McDonalds) and Paul put on a children's bag for another try while I did another load of washing.
We are looking forward to the day when we find the right bags so that we can do as the stoma nurse has suggested and change them every 3 to 4 days, so far we have not lasted to a planned bag change at all!
Noah's output was very liquid today and had reached 350ml by lunch time - this is supposed to be our 'take action' point, but he seems well so we've just given him a loperamide tablet and some extra drink for now.
What Now?
3 years ago
1 comment:
Angela, obviously all your posts are affecting me, as last night I dreamed that Pete was all booked in for the same op as Noah, and I was desperately asking why Pete needed one and trying to get him out of it.
It all sounds very hard what you are going through. I hope things get much better soon. It must be driving you batty.
Anyway, hugs to you all,
Bridget
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