Sam had a settled night last night with just a few morphine bolus doses needed to keep him comfortable. This morning he was smiling a little and spoke for the first time in 3 days - he said 'bye' to the blood lady. He still is only comfortable lying on his back and we've only sat him up slightly when we've needed to change his clothes or the Dr checking his epidural line.
The pain team called in at about 11am and felt it was time to turn off the epidural (which had been running continuous since the op) and to put on a low dose continuous morphine with bolus as required. He seemed to remain comfortable with this change so at 3pm his epidural line was taken out.
For info the various sites on his body haven't changed position which is not what I was expecting. When we were told his ilieostomy was getting moved further down, I assumed on down his torso, but actually they entered his gut through a mid line cut and manipulated the bowel and moved the bowel internally with the stoma being in a new position on the bowel (44 cm further down than before) but coming out the same hole as before. The same is for the G tube - it is in a different position in the stomach lining but comes out the same hole....
The surgical team seem happy with his progress and it's just a matter of time for him to heal and recover. My laymans take on what has/may happen is: we are waiting for his bowel to wake up. When the bowel is handled the nerves aren't happy and it closes down. Due to this he has been having high outputs of dark green liquid from his G tube, as the bile is not being propelled forward as the small bowel is effectively on strike, so it's being forced back into the stomach. The next 24 - 48 hours are crucial as this is the time it is hoped and expected that the bowel will start working again. This would be shown by fluid appearing in his poop bag and the gastic loses to decrease and change colour. In the last 2 days his gastric loses have halved so that is a good sign. So we are being patient and praying that this new part of his bowel that has never been exposed to fluid before, would wake up and work.
The ward play specialist brought in an array of dangly toys for above his bed and he has his favourite music playing....but mostly he's just comfortable, lying quietly with the odd bit of interaction. The only thing that sparks a big reaction is each time a helicopter takes off or lands and he becomes really scared and hysterical. It's so awful as I can't do anything about it, not even able to lift him to show him the helicopter (which usually settles him). He is so very brave with so much, but the sudden loud noise really scares him.
The girls have missed Sam, having not seen him since Monday and are really looking forward to coming up tomorrow and hanging out. They have been such little stars with a week of continuous sleep overs and living out of a suitcase and I'm looking forward to having them up here for the day, snuggling on my bed with books, games and snacks and seeing Sams face light up knowing they are here. He adores them and I know he will be totally thrilled to see them.