Tuesday +40

Today we had a visit from an excitable dietician who assures us that she will get us home! We are to introduce a bit of wheat (and she means a bit, a ¼ of a slice of toast) in an attempt to make William’s food more exciting and enticing. After all because of the gallons of milk that he is having put straight into his tummy he is not that hungry anyway but they don’t want to stop his feeds and wait for him to get hungry cos he (even W!) is too little for that and they need to stay big and strong to make lots of white cells and stuff (that’s a technical term btw). They do it that way around with older children although not necessarily those whose guts have taken a chemo hammering. By Friday he may be allowed a teaspoon of fromage frais (although sometimes they need to wait another month for Dairy). William is asleep now. His nappies have not been too bad today until this evening when he chalked up an impressive three nasties in an hour! The volume of the TPN is back up a bit to give his kidneys an extra flush today, a couple of his levels were a bit wonky (don’t ask me which!) but we are still hoping that he will be off it by the weekend. The folks on Fox need all this extra fluid to counteract all the dodgy chemicals (sorry, medicines) that they are still getting chucked into them. The docs have changed their minds about the Cyclosporin swapping to oral until Friday, instead they are going to swap the Aciclovir over from tomorrow (if they remembered to change the prescription). It’s all quite exciting, it will mean less time on IV lines and a happier Mummy because they won’t need to be in and out so much in the evenings and will therefore have less opportunities to wake W up! (the Aciclovir usually doesn’t finish until after 11pm and the next dose starts anytime from 4.30am depending how annoying/organised the night staff are feeling!). The hospital clowns (no, not the doctors, the ones with red noses and big shoes) came down the corridor today and William looked horrified, cried out and legged it back across the room to me and Grandma. Not much therapeutic value for him there. What is it that is so creepy about clowns? Congratulations to Carolyn, Kev and Harvey on today’s arrival Aeryn Faith, love and happiness to you all.