Last night was difficult as his bladder drain blocked, which was noticed by the nurse when she checked his drains each hour, and it had stopped draining. At around 1am he was looking quite rotund and a surgical House Officer came and we changed the drain - sounds easy enough, except Sam was very unimpressed with the lights going on ,'Go away I want to go to sleep'.....'Me Too!' I told him, so we just need to get on and do it! He was grumpy and sore and it required restraint.... So picture me in my Jammies (black with red and white hearts - on special at Countdown!) lying across his legs and holding his arms whilst 2 yellow gowned 'minions' - 1 a surgeon and 1 a nurse changed the drain. For a boy whose lungs are struggling, you would not have not known it last night. As soon as the drain was changed it drained, his screaming subsided and his stomach visibly deflated and went back to sleep!
Sam's pain has been so well managed this surgery, which I am truly grateful for. The morphine pump was turned off today, but the IV line was left in so that if he needed a bolus we could give him one - it wasn't needed! He has been sitting up, moving about, pushing his legs up and down and he has coped fine.
Francis and the girls escaped hospital land and experienced Hobbiton - it was lovely talking to the girls about what a great day they had had as they bubbled away with stories of Oak leaves, movie sets and all things Lord of the Rings.
The huge challenge ahead for Sam, and the medical team, is the chest drain and the large volume of chylo still draining from this cavity - around 400 mls in a 24 hour period. This has dropped off a little in the past 24 hours, but it needs resolving.
Slow and steady for us - we will aim to get Sam up more each day whilst the medical teams grapple with his oxygen requirement and chest drainage.
I am hoping for no blockages tonight and for us both to have deep sleep. I am tired, but I have needed to be here. Sam is now happy for Dad to stay - another great sign he is on the up!