Thank you for all your posts and support!
Well, yet more drama but we are home. His 4.5 hours of surgery went very well, they repaired the soft palate as his hard palate will need bone grafts Anyway, DS is also a grade 4 intubation (most people are a grade 1) so we always know he'll be gone a while whilst they set him up. He got back to the ward (that's another days rant) but soon after started bleading quite heavily and was really fighting to breathe. His NPA was blocked, his NG was in his other nostril and blood (fresh) was pouring out of his mouth but also pooling at the back of his throat. He was also in alot of pain (even though I'd been asking over and over for pain relief!) so was not at all happy. He got himself into such a vicious cycle of crying, which made him bleed more, which made his breathing worse etc, etc.......
Luckily, his surgeon had come to the ward (ward from hell!) to see him and spotted how upset and messy he was. Next thing we know, PICU and theatre are being prepped and off we go again! In respitory destress and with an emergency airway kit at the ready.
He had the bleeding sorted and was put on a ventilator for 3 days in PICU so he could recover. His airway was very swollen so they kept him sparked with loads of sedation which was for hte best but very upsetting to see, especially for Gma and DH. They aren't used to seeing him like that. I just seem to get on with it, I go a bit numb and just accept the situation for what it is but DH still struggles - understandably!!
Eventually we got the tube out and he was well enough to go to the ward and home on Saturday. They have said that the next time he needs surgery, he'll be booked an ICU bed as a matter of course rather than risk going up to the ward to be ignored and end up back there!! They are so short staffed. I have no idea how any children make it out of there in one piece. They are so stretched on that ward - unlike the cardio wards he's been on. I know general surgical wards get more traffic but it really is ridiculous. It's no surprise that lots of parents have little or no confidence in the NHS. It's hot, noisy and not always clean. Thank God parents can stay with their children to make sure they are okay!!!