Gavin: Water. Works.

We really only have two positions at the moment: at home, or in hospital. This is because no one really knows what's going on so the old football adage of 'each day as it comes' is all too obviously true.
It was a good one today. We went for the PET scan at UCH which is always a traumatic experience, but Sonny coped as he always does, despite being strapped into a proper piece of hospital kit the same size as our living room and staying completely still for two hours. Sleeping lions this ain't.
Back at home, we got back to the business of his fluid intake. A Nurse from a Pharmaceutical company came round early to give us training on the pump that will drip fluid down his NG tube. This will alleviate the pressure on him drinking 1.6 ltrs a day to flush out his kidneys. Before the flow is started, you need to draw some fluid from his stomach to check it's the right PH. 5.5 or below means the line is still in his stomach, above and it could have shifted to his lungs, meaning you'd then be pouring fluid directly into them. Eleven children died because of this last year alone, so it's a pretty important part of a process. After all that, the fluid goes in at 50ml an hour, meaning it would take 32 hours to hit his daily target... you do the math. Thankfully, Sonny has started taking small sips on his own again and even managed two rich tea biscuits which is a huge boost to his energy levels.
So, next time you're stressed at work, just think about us drawing bile from Sonny's stomach to see if we could kill him before we try to save him with fluids. Or have a rich tea, both seem to work.