Tuesday +61

Grandma rejoined us today. The Consultants did their rounds this afternoon and are booking an endoscopy and colonoscopy for William for next week. This will help them see the damage to his insides and work out how to proceed. Until then we continue pretty much as we are. They will cancel it if he makes significant improvements in the meanwhile. His liver function tests are improving with the steroids so that’s good. He has been struggling to communicate what he wants today, partly because he couldn’t really work out what he wanted. He has thrown a few short but very dramatic tantrums which is most out of character for him, I am hoping that it is not due to the mood swings that the steroids bring (already?) and just down to a bit of overtiredness. His blood gasses have been better too with the oral Sodium bicarbonate but now his urea is a bit up which is a sign of dehydration so he will be having extra, extra fluids tonight! His nappies overnight are much improved but not during the day. I think we could consider that to be progress, of sorts. I gave our letter regarding the new restrictions on Fox to Camilla today who read it and said that I raised some good points and that they were having meetings and then some more meetings so they would bear it in mind. There is to be another parents meeting later this week. Jack is moving to Robin, the ward next door (despite the virus?!?!?) and I wouldn’t be at all surprised if we follow shortly. It wouldn’t be too bad, a seasonal change of scenery and you can eat in the rooms on Robin!!!!!! It is the Immunology and infectious diseases (!) ward where our new team of doctors are based anyway and is only a double set of doors away although I don’t relish getting to know a whole new team of nurses, although W might like a few new faces. The parent’s room and kitchen are shared between the wards anyway and there is generally a higher turnover of patients.