Today is one week from admission and Noah put on real clothes again to go for a walk (took a bit of persuasion as he now in a rather teenage way like lying in bed in pyjamas being waited on by nurses).
I'm not sure whether the elastic waist of his shorts is supposed to be above or below his stoma = it falls naturally directly on the stoma (usually the stoma position is carefully planned before surgery but obviously this wasn't possible in Noah's case)
I changed the stoma bag for the first time today with the stoma nurse there to guide me. Noah covered himself totally with a sheet in the hope that we wouldn't notice him and would leave him alone then fought for a long while. The nurse said "But he was so quiet last time" so we explained that was how we knew he was sick!
Anyway I did it and Noah showed a bit of interest and helped roll up the end of the bag.
He is still producing too much fluid in the ileostomy to be able to replace it by drinking so we will probably be in till Thursday by which time it is hoped the ileostomy will have settled somewhat.
I'd explained that Noah loves bubble gum flavoured pedialyte but children's ward wasn't able to get any from hospital pharmacy. (All children prefer the bubblegum to the fruit flavour - that's why children's ward had run out) However by the entrance to the hospital is an independent pharmacy and they had a bottle and were able to get five more in by early afternoon and Paul was able to prescribe it so it only cost $3. Noah immediately drank 2 cups of this which may even help replace some of the minerals he is losing.
He will have his blood electrolytes measured again tomorrow and hopefully his haemoglobin as he looks a bit pale. He has walked a bit further today (he was allowed a two hour window without his drip which meant he could leave the ward) but gets very tired. Paul also has to work this week as many doctors are off for holidays over Xmas, this meant I had both Isaac and Noah with me which was a little awkward at times. On Weds and Thurs Paul has A clinic in New Plymouth so it will be even more interesting then.
Now need to catch up on washing, bath Isaac and maybe think about how far behind we are with Xmas preparations while I (Angela) have an evening at home.
143 days....Weird Goal, huh?
5 days ago