We have a plan. This has reduced my stress levels at least somewhat.
We had forgotten what surgeons are like, so our idea that we might have a long conversation weighing up lots of options did not happen. Instead the surgeon came in said "Happy New Year, what did the x-rays show?" We showed him our print out of the barium enema and a photo of the prolapsed stoma and he said Noah needs to come in for my next list to reverse his ileostomy and have "a bucket full of botox in his anus".
Basically he says the very dilated bowel is not the worst he's seen and that so long as the anus is no longer tight we can keep it empty with daily enemas or washouts. Check this link for a full description and imagine how Noah (and us!)will enjoy this even though it is a lot less dangerous than our present situation.
The surgeon has his lists (operates) on Friday and Noah needs three days of bowel prep. So we need to go in next Tuesday for full bowel prep and washout which will need a drip to replace the fluids he loses. He will probably be in for 5 days or so after Friday's surgery.
We are tryign to arrange that Hannah and Isaac, Paul Noah and I will go down on Tuesday and get a room in Ronald McDonald house (on a temporary site at the moment) Paul will sleep on the ward that night then fly directly from Wellington to New Plymouth to do his clinic there on Wednesday and Thursday. That means he'll be back for the surgery on Friday when he'll take a weeks holiday (0r maybe even ask for compassionate leave) and Hannah will be able to get a bus back to Palmy wheever she wants from then on leavign Isaac
So we now have to try to keep Noah lying absolutely flat for 6 days, or as the surgeon says you can take him in for the bowel to be reduced in Palmerston North if need be before that - they can cut a bigger hole so it can be reduced but don;t let them remove any bowel!
Unfortunately Paul has to do a clinic in Gisborne tomorrow and Friday leaving me to manage alone and after the extra movement and sitting up Noah has done today the stoma is very unstable and keeps protruding about 8 cm and going purple and being hard to reduce. When it goes in the other bit of bowel (the good stoma) pinks up and starts producing loads of gas. We are on a real knife edge but will now treat Noah as a total invalid and give him a"soft, light, non-gassy diet" - surgeons instructions.
We are trying to think up ways of keeping Noah still - wearing pyjamas is one, watching new DVDs in bed, having Paul give him a present on return from Gisborne if Noah has not been downstairs. I'd be grateful for any other suggestions.
Please keep us in your prayers over these next few difficult days - I am really not sure we will make it without visiting ED in Palmerston.
143 days....Weird Goal, huh?
5 days ago