Saintly hickman line well holely

Thursday +21
We have had a (reasonably) good nappy day and W has drunk a total of 150mls of chocolate flavoured rice milk! The dieticians will not be increasing his NG milk feed from 5mls/hour until his tummy is more settled still but hopefully at the beginning of next week. Unfortunately the nurse discovered 2 tiny holes (possible bite marks, although I’m not entirely sure that it reaches his mouth, I will have to surreptitiously check as I don’t want to give him any ideas!) in his Hickman line tube this afternoon. After a momentary panic (thinking he would need it replaced, involving another operation) they revealed that they can fix them, phew! A specialist nurse with lots of sterile stuff, snipped the end of and glued another end on and covered it with a cover (what else would you cover it with?) and it now has a splint (the middle of a syringe) bandaged to it for 48 hours until it gets better! We did have to hold William down for several minutes which was a bit traumatic for him but he was very brave and soon got over it. They have had to wait 4 hours before they can use it so some of his meds have been delayed and they are about to attach them now so fingers crossed that it still works!!!!!!! (it does!!)
He has otherwise been a happy chap today and has been playing contentedly with his new toys and even watched a whole 4 episodes of Postman Pat (his first postal encounter) without screaming ‘tract’ (which means please put Tractor Ted on NOW Mummy or I will keep shouting ‘tract’ and cry until you do or until I get bored and play with something else and then try again in a few minutes (or try Grandma now she has learned how to work the DVD player!)) Am happy to have included considerably more brackets than I have been using of late (did you miss them?)!

Friday +22
The consultant popped by this morning for chats about W whom he is still pleased with, progress wise. W was very well and happy today. A play assistant even stopped by for a while (for only the second time during our stay, which has been very disappointing) and W played quite happily with her for a short while, at one point I wasn’t even in the room. Hopefully they are coming back on Monday for more fun play. Unfortunately he woke up around 7.30 this evening and was promptly sick so we watched some TV together for a while which made I nice change, I couldn’t face yet another evening spent in the half light, trying to be calming to get him to go to sleep, so after some more meds and obs he went to sleep again past 10.30 but slept well until 5. I do wonder how on earth we will settle back into a routine at home but I am sure that we will, given a bit of time (after all it only took me a year to get him to sleep all evening!!!!! (Ahh!!!!!))

Saturday +23
It’s Daddy day and the Bloomsbury Festival so there is music and people on stilts which, was pleasant enough to walk around but would have been much more fun in the company of Rob and William. I walked over to Covent Garden this afternoon for a mooch around the shops. A pleasant evening meal with ‘ribena’ (well, illicit wine actually) although W is awake again now but happy. Rob is staying just down the road this week. W’s white cells are back down and his neutophils too so I think we might be in for another boosting dose of GCSF if his counts don’t pick up tomorrow. Our doctor for today went to school in Trowbridge and her parents live in Melksham! And on a Wiltshire note congratulations to St Paul’s Primary School in Chippenham who raised over £250 for Jeans for Genes Day following Rob’s talk (spectacularly because of, or despite of, he is not quite sure!!) The school contact for Jeans for Genes, son also shares our Lifetime nurse, it’s a small genetically challenged world!!!! I was pleased to read that they have found another donor for Luke Hartley and that they will be back in GOS before long (http://www.teamhartley.co.uk/) and wish the family a successful journey through their 5th transplant and can only imagine how hard that will be. Rob was v excited to meet Otto last night and see David and Nicky in their new home (which looks v organised as they have only been there a fortnight and Otto is a week old, they really are superparents!), I was v sad not to be able to go too. Well we must check the rugby score so bfn.