ANOTHER week begins...

Monday +25
William had his Hickman Line fixed (again) this morning which he didn’t think much of, but they did rule out teeth damage and think it was weakened plastic tubing anyway lets hope we have no more problems with it. The play specialist did turn up this morning bringing with her paint, glue and glitter which was the most fun. W was hilarious, pouring the glue out from the tub and putting his hand in it to get it out rather than use a brush. He produced four masterpieces, two in mixed media (bits of shiny and fluffy stuff stuck to paper) and two paintings (rather abstract)!!! The consultant came round too with much the same story, it is matter of time really waiting for W’s insides to sort themselves out and is much what they would expect at this stage. His GCSF gave his white cells a boost to a reasonable 5.something and chivvied up the neutrophils a bit too so we will wait and see what happens to them now. We had a fun afternoon playing with Grandma and mega blocks. All quiet for ¾ hour until W was awoken by the nurses so now he is bouncing around the cot getting very tangled in his lines (uh oh) (at least he was asleep long enough for me to grab some tea). He did give me cause for (minor) alarm earlier when he spat out his chocolate milk but did concede to drink it later on. Still no more milk feed or food. He is losing a bit of weight now so they are keeping a close eye on him so that he gets enough calories from the TPN which always seem to be too much, too little, too much fluid, not enough blah de blah and rather over complicated and it takes at least 2 days to get any revisions through from pharmacy and more if it’s the weekend. The ward is running very low on size 5 nappies (all the cool tots are wearing them this season on Fox), and have run out of mouthcare packs (we use 4 a day) and sterile, wrapped straws (W does like a nice straw) which believe me is a frustrating state of affairs (it’s just that nothing is in my control at the moment).

Tuesday +26
W broke free from his TPN late yesterday evening and it can’t be reconnected so he had fluids overnight instead. This morning he broke free from his newly repaired Hickman line. A sharp tug broke the new ‘fix’ and the was some leakage of the red stuff but a flurry of staff soon had him clamped and the IV team came and repaired it AGAIN with a few harsh words from the senior nurse. Have you ever tried to wrestle a toddler attached to a tall pole with up to 4 (varying) lengths of clear tubing? Well I don’t recommend it!!!! However a few mouth packs and a couple of packs of nappies (to share) have appeared and I haven’t checked for straws!!! Otherwise medically it’s business as usual. William’s white cells are a bit depleted again at 1 point something and his neutophils are back under 1 which is still a bit disappointing but he will most likely have a top up of GCSF tomorrow. He will be having some red blood cells later on as his haemoglobin is a bit low. He has seemed a bit tired today but that may be the shorter nights sleep that he is having as well. I sloped off to London Bridge and met Tasha for lunch today which was divine!!! (ha ha) I had a lovely time and my chocolate stocks have now reached an all time high, hoorah! Rob and William had lots of fun drawing and watching Tractor Ted and Spot. I’m all alone now (ahh) but I’m sure a nurse or two will pop in numerous times this evening so I shall enjoy a moment of peace and listen to W snoring. Our buzzers are broken (and are likely to remain so for a couple of days) so every time we need anything we have to pop out of our rooms to find someone, taking off our aprons and on our return put another one on and wash our hands. This evening as a minimum I will need a flush (the first dose of medicine is already running)(the flush gets the remaining medicine out of the tubes and into William), another dose of medicine, a flush, a heplock (this clears the Hickman line and stops the blood clotting in it) and some fiddling around when the blood transfusion finishes. By 7.30am he will have also had his bloods taken (they do that every morning from his line) and his first medicine started, a flush and another medicine started and his TPN taken down so that’s quite a lot of routine stuff plus they check him every 4 hours and the machines hourly but at least I don’t have to call them to do that! Enough ramblings or my quiet time will be over…….(hope you are not all too bored or think that I’m moaning again either, I want to give you an idea just how much goes on!)