Life changes so fast. We had a really good week with all sorts of Christmas events and at the Friday Down syndrome party I even dared say "I've stopped having to worry about the boy's health ."
He was fine on Sunday lunchtime then suddenly got tummy ached and just lay down and complained and wouldn't even get off the couch to watch a personalised santa message on the internet.
He went to sleep OK but still had tummy ache din the morning enough that I didn't want to leave him to take Isaac to eye clinic. When he said his shoulder hurt, I phoned the GP surgery(shoulder tip pain can be a referred pain from the diaphragm being irritated) they couldn't fit him in till 2.45 but when I phoned Paul obviously worried, Paul said he'd go down to children's clinic and talk to a paediatrician.
We thus bypassed the usual referral system and were seen at 1pm, x-rayed immediately which showed air under the diaphragm and dilated small bowel (signs of perforation) and in theatre by 3.30.
The paediatrician involved is the same one who was miraculously present at Noah's birth (who we knew from our church) and he is now literally days away from retirement so Noah will be one of his final patients.
They considered airlifting Noah to Wellington - the paediatric surgery unit - where his previous bowel surgery was done. The paediatrician spoke to his original surgeon in Wellington who said it was such an emergency though that Noah should have surgery in Palmerston North (this is of course more convenient for us).
Two and a half hours later (and some heavy duty antibiotics and a lot of questions about what pain relief as Noah is probably allergic to morphine) the surgeon came to tell us there was a very small hole just where the small intestine exits the peritoneum (Noah has no large bowel since his neonatal surgery) but that the lower bowel looked chronically obstructed functional not mechanical (ie not a blockage or twist) so he had spoken to another surgeon in Palmy and the original surgeon in Wellington and they all thought Noah should have an ileostomy to avoid a further perforation if they just repaired the hole and left the chronic obstruction.
The theatre and recovery room staff were wonderful and it was Hannah's best Friend Heidi from primary school who was the nurse on for Noah and of course had known and cuddled Noah as a baby.
Noah came back with 8 "tubes" as he is already proudly calling them - a catheter, abdominal drain, ileostomy, sats monitor lead, oxygen mask, nasogastric tube and two IV lines.
48 hours later he has dropped the oxygen and monitor but his gut is still not working so he is needing quite complicated fluid and electrolyte balancing along with pain relief - this includes IV panadol which I had never heard of.
Paul is sleeping there tonight and I plan to bath Isaac, shower myself and have a long sleep in a comfortable bed.
143 days....Weird Goal, huh?
5 days ago