Could this really be our last night here?

Saturday +114 and Sunday +115 and Monday +116
I met Nicky, Andy, Hannah and Ella at the Science Museum for lots of educational fun. After a pizza (just for a change) we met Rob and William. It was so lovely to see William back with his cousins after so long. There was a, who can get the wettest feet competition which, as a result of Nicky’s swift intervention (or sabotage depending on your perspective) on Ella’s behalf William won!! Planning our exit strategy continues and I am cautiously optimistic that I will be posting this not from Tuttis but from home!!!!! The metaphorical (although am secretly hoping, actual) champagne is on ice. No TPN tonight hoorah and milk up to 44mls/hour. This evening William is refusing to sleep and is rather overtired. I am off to get his meds in the feverent (and somewhat optimistic) hope that he will be asleep on my return (he wasn’t, he had managed to pull the IV pole towards him and zero the milk rate!) During my stoic, I am ignoring you stance he had already managed to unscrew a crucial part of his milk dispensing system resulting in a minor flood!!!!! I received some worrying news this morning from Claire that it looks like Lucy’s leukaemia is returning for the second time, please pray extra hard for Lucy and her whole family as they face this unimaginable horror.

Tuesday +117
Well it’s been all go here. I had an interesting meeting with the dietician discussing milk feeds and dishing out the formula at home and nutrition generally so lots to think about, a fluid target of 1.2 litres (to help flush his kidneys) including 800 mls of milk to start with. All aspects subject to much change as we progress. We also had a lovely meeting with our CNS Rachel who is overseeing our discharge and a bit of a what to do and not to do when you get home recap (as it is a wee (!) while since our first going home talk!!!!!!!!) She is fab. Lots of things are getting organised now and I have bags of medicines to take home (he only has to have meds about 16 times a day now!) Rounds came and went, no much to report there. Kidney function a bit wonky but otherwise doing ok. He is having his Immunoglobulins tonight to keep him going for the next 3 weeks. Had a lovely day with Mum culminating in (another) bottle of wine and making up words to fit the crossword when we got stuck.

Wednesday +118
Another super hectic day. Lots going on and even a phone call from Dr Peter Rudd in Bath welcoming back to the county (only a little prematurely, we hope) and assuring us of our open access to the childrens ward and their availability if we have any probs. Had a Hickman line safety talk which was v informative and useful. Collecting together some more bits and bobs just to ensure that the car is packed to the rafters. There is still a bit of concern regarding William’s creatanin levels which they will double check tomorrow and unless they are WAY up I think that they will let us go, with repeat blood tests on Friday and Monday and then back to clinic on Wedneday. There is so much going on in my head, I wouldn’t be surprised if it explodes! Phyllis and Dad joined Mum and I today, and I was able to enjoy a lovely meal with P and D whilst Mum held the fort here. We all went to the park to visit the sheep and ducks and play on the swings. It was lovely. I saw Keller’s Dad today and he is really doing very well now and they hope to be back on Fox in few days and generally not much longer in the hospital so hoorah. Claire popped around today and it was lovely to see her although would prefer if we could meet in coffee shops not wards (with our children and husbands safely in tow!) We will be thinking of and praying for you and your darling girl over the weeks ahead.