Why I hate Mondays!

Monday +4
Well I was in bed asleep by 8 last night but an hour later the nurses were doing their usual and were in and out every few minutes doing something or other so it was past midnight before I slept for a bit again. William slept reasonably through most of the cafuffle and beeping though. He has been a good, brave boy today. He ate a whole slice of toast this morning. Unfortunately his NG tube came out again, the plaster holding it in place had seen better days. He screamed and went v red when they put a new one in but he soon forgave the nurses. The play assistant finally pitched up to offer ‘helpful’ suggestions on ways to get William more comfortable with having his BP taken, sadly she had nothing new to offer but was at least impressed by Grandma’s latest acquisition of a toy BP cuff with pumping action! I escaped for a breath of fresh air and my routine trip to Waitrose leaving William in Grandma and Tractor Teds capable hands. It was also dressing changing day for his Hickman line so more torture for the poor wee man but we did it mid Jaffa cakes so at least there was a chocolatey reward at the end. A different Consultant breezed by this morning (a small team rotate every 6 weeks so hopefully we won’t be here to meet the next one) who seemed nice enough and not worried about W at this stage. W was less struck on him but is now wary of people he doesn’t recognise wearing plastic aprons. We were glad of Grandmas company today on what has been one of the more wearing days. Keller the 9 years old a couple of doors up was allowed out of his room for the first time post transplant today so that gives us all hope to see him walking up and down the corridor. I am very proud of Robert today who went to a primary school in Chippenham and did a talk for Jeans for Genes day in front of an audience of over 250 children. Did you know you share 50% of your genes with a banana?

Tuesday +5
A rather traumatic evening for W last night, his NG tube was somehow blocked and they had to put a new one in. Two in one day isn’t much fun at all, for anyone. Anyway we were finally resettled just past midnight so were only just waking up, mostly thanks to the fire alarm which someone’s toast sets off most mornings, when Daddy arrived laden with goodies once again. In the past few days we have changed A LOT of nappies not to put too finer point on it and his petit derriere is suffering. He has been having Dioralyte through his NG tube at a fairly slow rate all night and day plus the odd IV fluid top up. He is not losing weight at the moment which is good and they will probably put a milk feed up tomorrow and see how his tummy copes with that. He is encouraged to eat anything he likes and today has taken advantage of that with chocolate buttons and jelly tots a plenty and just a small bite of pear and spoonful of yoghurt. The last couple of days have felt long and tiring, the end seems a long way away and the frequent nurse visits, especially when he is just dropping off to sleep have become increasingly tiresome. I popped into the chapel today which is beautiful. Very ornate, apparently they moved the whole thing from a different building. I am reliably informed that it was featured on Blue Peter some years ago. William is about to be freed from his tubes for an hours run around before bath and bed and more tubes so I shall go and enjoy this time with him.