Thursday +49 (day 50 tomorrow?!)

Today has been busy actually. I had some training on a milk pump that we will be discharged with, fairly straight forward and we get helpline numbers anyway. ‘They’ whoever they are will coordinate deliveries of milk feed, ‘sets’ (the line that the milk flows through) and containers etc and the actual pump in due course. Bit tricky at the mo cos we don’t know what we will need but time will tell, as it so often does. Mum and I had lovely toasted paninis for lunch from Starbucks (due to kitchen closure) and have had a lovely posh picnic tea with sarnies, crisps, wine and choccy puds! William was rather unsettled this afternoon but slept for an extra bit after some codeine. He was very brave when they took some blood from his toe to check the antibiotic levels (they can’t use the hickman line because sometimes there is some residue in the line which gives a false reading). He does have a chest infection but already is taking sufficient antibiotics to cover it but they may repeat the chest x ray in a couple of days if he doesn’t seem any better. Sadly they have stopped his milk entirely now to give his tummy a complete rest. His TPN has increased further (and will be 16 hours tomorrow rather than 12) and he is having continuous IV fluids. He is also having no food now again, just sips of water. This feels like a huge step backwards (which it is) but it will hopefully allow us to make huge leaps forward in a few days! The nappy situation has improved as a result!