Reporting live from Holburn

well it's day 50. lots of beeping machines last night but nothing else too eventful to report. expecting new neighbours later today. sorry not to have posted all this 'stuff' sooner suprisingly busy. thanks for your lovely comments folks. bfn C xx

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!

Wednesday +48

I had steak and wine for lunch with Dad today YUM! We had a lovely time although sadly he wasn’t able to come onto the ward. They are shutting the parents kitchen for 48 hours too for a deep clean which will be a bit inconvenient but better than us ALL getting the virus. Lucy went home today HOORAH. I was so happy to see her heading out with her coat on in her buggy and her parents laden with bags but also a teensy bit sad (well actually I confess to having bitten my quivering lip rather hard and then having to reach for the tissues as they disappeared from view). Claire has been a great support, always a wise word or two and I shall miss such friendly, cheery neighbours but wish them a happy new beginning (should I get a job at Hallmark?) Actually the other day, Rob and I were only discussing a gap in the card market we were wondering about a ‘Thank you very much for being my bone marrow donor’ card! No reaction to the antibiotic that ran between 3.15 and 6am although William did think that he would bounce around the cot for the first hour or so just to be sure. I confess to having fallen asleep when the flush was running but did catch forty winks mid morning and had our morning consultation with our doctor (who is lovely and doesn’t look at me as though I am odd and W likes him too) with the blanket still wrapped around my shoulders and my hair standing on end (maybe that’s why the others think I am odd? Or am I just paranoid? (rhetorical question, they really are talking about me behind my back (ha ha) no really, they are)) (having re read that I would like to prevent misunderstanding and point out that I was fully clothed). Otherwise we have taken some backwards steps the nappies situation is not improved (and by the sounds of it there will be another for the pile in a mo, but that’s probably more info than you really need) the milk feed is running at 5, he had to have water down his NG tube, he was sick twice (but they did stop one of his anti sickness meds! which is now available ‘as required’ which btw I can’t quite figure out, what wait until he’s sick and then give him a dose and then wait until he is sick again?!?!) his TPN is up again and for the first time he is getting the ‘fat’ element with extra calories (it seems to be a bag of which stuff containing ‘fat’) yummy but hopefully all this will help, one step back and two forward or something?!?!?!?!!? By the way my reflexology was most interesting and relaxing and only a teensy bit tickly on two occasions, I am glad I took the opportunity. Must go now, sleep to catch up on and meds to look forward to at 3 yikes! (just felt like using the word yikes, have gone a bit Scooby Doo!) defo time for bed.

Tuesday +47

Rob was with us bright and early this morning with only a 4 minute delay on the trains! I had a lovely trip to the Science Museum today to meet (Aunty) Karen who was on a King Alfreds trip with just the 180 students! It was great to catch up. This afternoon William had a bit of a reaction to one of his newer antibiotics, his whole head went a bit (well quite a lot, actually) purple. It’s a common side effect that they call Red Man for obvious reasons. Normal colour has resumed but lucky for us, the next dose is due at 3am (!) so will make sure that I keep a close eye on him then. The milk feed has come down in volume today so the TPN is up again (boo!) but the nappies are a bit improved (hoorah!) He has been a tired bunny today again so hopefully that is just his body taking the time to repair itself and muster troops to attack the virus.

Monday +46

The beginning of week 9 and NOT going home this week (unless there’s drastic turnaround with the fluid intake output situation) so rather depressing situation battling this virus but on the up side am having my first ever (complementary) reflexology session on Wednesday and am quite excited although nervous about having tickly feet (not sure that’s really the up side at all but am desperately looking for silver linings!). The ward is closed to visitors for another 72 hours as another member of staff has bug. Saw rather scary suited Infection Control lady this morning with clipboard and tweeds so if the virus saw her I expect that it legged it. We had surprise chest xray this morning. Out of the blue the radiology girl and her portable machine arrived. I was quite frankly a bit annoyed that nobody had thought to mention it to me but anyway it’s good that they are ruling out any bacterial infections. Neutrophils are back up a bit, no one else concerned, must stop worrying unnecessarily! Consultant handled me with kid gloves this morning when discussing the not going home situation and the other doctors looked at their shoes a lot! I think they thought that I might have got a bit emotional but really I had realised that we can’t look after William at home as things currently stand. The moving hospital thing is really off the cards at the moment too, no one wants us….well not with this virus. I had a very tasty slice of Jack’s 1st Birthday Cake made by the hospital green kitchen. We got the new Shaun the Sheep DVD today which made William laugh out loud. He ate Jelly Tots and maize crunchy crisps and slept quite a lot and it only felt like Grandma had just arrived when it was time for her to leave. I walked up to see the new St Pancras station, there’s a fair bit to do before it goes international in a couple of days time! The shops are mainly opening in December and next Spring but it is an amazing building/space, I do like a nice train station!

Saturday and Sunday +44 & +45

William and I have had a good weekend with Rob. It made the weekend feel much longer having him arrive on Friday. William’s temperature has been grumbling up to 38.4 and then down again and then up again. His neutrophils are under 1 again today. His nappies have been frequent and his poor little botty is so sore with the Thrush, he had codeine earlier to take the edge off the pain at nappy changing time. He is a bit bored but we spent a bit of time with glue and felt tip pens today so he has some interesting glittery bits and some unusual tattoos! The ward is currently closed to visitors to try and keep a lid on the virus that William and Jack have, they think that Unfortunately Grandpa was going to come up tomorrow for the day to see me and William, he has rescheduled for Wednesday in the hope that he will be allowed on the ward by then. William slept well yesterday evening and Rob and I watched Harry Potter and the Goblet on the laptop without disturbing him which was fun. The ward round will be in the morning when I hope they will be able to say when we can go, although with the temperatures I am not sure they may well defer the decision for a couple more days but who knows? He is still on the TPN and they haven’t switched the Cyclosporin to oral yet but I know that they are desperate for rooms from Monday week! Also need to get milk pump training sorted and on top of feeding a bit. He did eat quite a lot today, some more crunchy maize snacks, wafer biscuits, half a fruit pot and a bit of Daddy and Mummy’s muffins (that last thing didn’t fall quite within the dairy free guidelines (he is supposed to be on wheat again by now but hasn’t fancied the toast or anything else wheaty offered) but he liked it and we think that is important too (and so does the dietician)!

Live from Tuttis (my internet cafe!)

It's all storms in tea cups. William's temp is still up and down but not a real cause for doctorial concern (just parental!) No oxygen required although his breathing today is still quite shallow and fast but I digress. Lucy is OK, her Mum says that she has a leaky valve in her heart due to all the chemo but that they can treat it with drugs and keep an eye on it but at least it explains why she has been needing a bit of oxygen. Clare (her Mum) is SO brave and seems to take pretty much anything in her stride, I am sure that I, like many others would be freaked out by developments of that sort. I really admire her. She has said that at times during her illness they have cried for days but I have never seen her less than together (but not in a cold uncaring way) she always finds time to wave at William through the window and find out how we are. She thinks that they are still on track to leave at the end of next week. Rob arrived safely last night and W woke up to say hello shortly afterwards and they had a ball! He had some blood overnight to boost his haemoglobin but otherwise nothing much else to report yet. Back to watch Babe later on, even W has tired somewhat of Tractor Ted!!!!