Today Sam got rather unsettled and was working really hard at his breathing - could be due to discomfort as written above. So his low-flow oxygen was increased slightly and that settled him nicely.
The gastro-team continue to challenge his stomach and are keeping a watchful eye on his input and output of all fluids. This is a complex balance and we will update you as and when we know more.
Sam is on 7 different medicines of differing volume, daily regularity and methods of infusion, so today I have been focusing on trying to learn how to say them (!), when, why, where and what for, so that I am fully aware of his care. It is a challenge for my wee brain, but again so good to have this concentrated time with him. I just LOVE being with him and hearing him cry and picking him up and having him settle in my arms with those big brown eyes.... He's lovely and a real gift to us.
Do pray for Sam as he gets to theatre again and for the bladder to stay in the right place.
With love, Shirley