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!!!!

Friday +43

Am tense today. This morning I left W for ½ hour with a rather glamorous volunteer (she works for the charity side of GOS attracting corporate and personal donations they are aiming for 50 million this year and have got 10 million from those lovely people at Morgan Stanley, there are some children here who have never been home because they are so poorly and the current facilities do not allow a parent to stay in the room with them) whilst I went to accommodation services to get Rob a room for tonight and tomorrow, which I did.. hoorah. W didn’t think much of being left with her and apparently ‘took a while to settle’ but was happily sitting on her lap reading a book when I returned. He also smelt of expensive perfume after she had left which was kinda weird! The consultant is still pleased with W and hopes we can leave here next thurs/fri and GO HOME!! Must not count chickens until we are in the car but it’s a promising indication. Anyway I am waiting for Rob to arrive now and can’t wait (not just because he is bringing Pizza!) I think that Lucy next door isn’t doing so well and I am so scared for her and her lovely parents. She (and they) have been through so much (she has had 6 rounds of chemo in 7 months prior to her transplant) and were at one stage likely to leave next week. Now W has a temp of almost 38 again and his oxygen levels are a bit low and the nurse is getting another probey bit just to be sure. Aargh, also being here on your own is really no fun, am such a wimp. Tried to be creative yummy mummy this afternoon but only had water colours which are a bit sophisticated to use with a 21 month old and a spare mouth swab sponge! We have played with most things quite a lot (but this is NOT a plea for more toys) what we really need is not to be stuck in this room (bloody virus!) (and to get safely home!) W wouldn’t eat any of the delicious morsels offered to him today except for 4 organix crunchy thingmy bobs which is also frustrating (although at least it is not my home made delicacies that I am chucking in the bin yet!) I have drawn up W’s medicines today and given them. He needs and will continue to need for a while medicines 6 times a day and all in all today I will have given him medicines 26 times (not all different things) today!

Thursday +42

Robs train was very delayed this morning due to a fatality on the line but he got to us in the end at around 11. William went to sleep 45 minutes later with a temperature of just over 38 and Grandma arrived shortly after. Rob and I went off for a delicious meal and a short walk (mostly around Waitrose)! It was great to take a break together. William has been given some antibiotics as a precautionary measure although they have taken a nasal swab and blood cultures they like to get a pre-emptive antibiotic strike in rather than wait for results. His temperature has come down a bit now. Rob and I had our going home talk today. The going home guidelines are pretty comprehensive. Apart from all the medicines, community nurse visits, milk feeds and hospital follow ups there is quite a lot that we need to be careful of for the first 6 months post transplant until the magic day when those lymphocytes get going. The talk took almost 2 hours and we didn’t cover the medicines or milk feed aspects! There are quite a few restrictions about food and contact with ‘strange’ people in public places. The good news is that we can welcome healthy visitors to our house! Interestingly the different transplant centres in the UK offer different guidance. GOS say that all fresh fruit and veg is fine but apparently Bristol say only tinned or frozen for 6 months!? The team here have spoken to both Bath and Bristol so we will be in safe hands if we ever need local help and we can call here 24 hours a day for advice too. Coincidently Lizzie (immuno nurse specialist) called during the talk and we will be with Prof Adam Finn (as seen on the news this morning by my Mum talking about chicken pox vaccines!) who we know has worked with WAS transplant children in a previous role (his role now specialises in Immunology) and we have seen him and his team previously in clinics so that’s good. There’s lots to organise with the local community and hospital nurses but Nikki was very impressed with how helpful and positive all the people that she needs to liase with in the west country have been. I put William’s evening medicines down his NG tube for the first time! The scary bit is drawing them all up which I have to do tomorrow..ahhh..hope we get one of my more favourite nurses! We also made a landmark move to oral Aciclovir today! Only one IV medicine to go (not counting the antibiotics that he started today!). I have just spoken to Jill, Jack’s Mum who says that it’s his first birthday on Monday. It’s such a shame, they were so close to going home before he got the virus and now I think they will be at least another week or so. I stood there thinking that I was sure he was only 10 months old but then realised that of course he was when I first met them!! Time in here feels like it has stood still a bit, but that ‘other’ world keeps on turning. I believe it is now definitely Autumn and that we are hurtling towards Winter and Christmas!!

Wednesday + 41

Today I had a lovely lunch and catch up with Nicki and Ruth. Granma Ruth was able to come and spend some time with William to everyone’s delight. William has been a bit on the toasty side today and reached 38 degrees at one point so time to go to Bath! (previously we had to take him to the childrens ward at Bath hospital if his temp reached 38!) I’m fervently hoping that he doesn’t have an infection in his Hickman Line, the ends had a bit of a dunking in poo during a nappy overflow situation last night (not for the first, nor I expect the last time) anyway they all got cleaned up and the ends changed this morning and they have sent off cultures. His nappies have been a bit worse in frequency over the last 24 hours so rather than replace fluids IV as they did last night they have turned the milk down a bit. The extra nappies also mean that they have delayed the change of the Aciclovir to oral from IV until Friday if things are improved by then. They have also not reduced the TPN so we are a bit behind schedule for leaving next week but there is still hope... It’s a big day tomorrow, Rob and I are going out to lunch, together! It will be the first time that we have done anything together outside fox ward since W went into isolation (that’s about 48 days ago). Also its our ‘going home talk’ and Grandma is doing overtime so that we can relax and concentrate in the knowledge that W will be happy with her rather than random nurses. Not much sleep last night and have just got W back to sleep so will sign off and make the most of the moment of quiet (a noisy nurse is due to do some obs in a few minutes) and am typing in the dark and realising that it would help considerably if I could see the letters, my tiuch tyoing isn’t quite up to scritch!

Tuesday +40

Today we had a visit from an excitable dietician who assures us that she will get us home! We are to introduce a bit of wheat (and she means a bit, a ¼ of a slice of toast) in an attempt to make William’s food more exciting and enticing. After all because of the gallons of milk that he is having put straight into his tummy he is not that hungry anyway but they don’t want to stop his feeds and wait for him to get hungry cos he (even W!) is too little for that and they need to stay big and strong to make lots of white cells and stuff (that’s a technical term btw). They do it that way around with older children although not necessarily those whose guts have taken a chemo hammering. By Friday he may be allowed a teaspoon of fromage frais (although sometimes they need to wait another month for Dairy). William is asleep now. His nappies have not been too bad today until this evening when he chalked up an impressive three nasties in an hour! The volume of the TPN is back up a bit to give his kidneys an extra flush today, a couple of his levels were a bit wonky (don’t ask me which!) but we are still hoping that he will be off it by the weekend. The folks on Fox need all this extra fluid to counteract all the dodgy chemicals (sorry, medicines) that they are still getting chucked into them. The docs have changed their minds about the Cyclosporin swapping to oral until Friday, instead they are going to swap the Aciclovir over from tomorrow (if they remembered to change the prescription). It’s all quite exciting, it will mean less time on IV lines and a happier Mummy because they won’t need to be in and out so much in the evenings and will therefore have less opportunities to wake W up! (the Aciclovir usually doesn’t finish until after 11pm and the next dose starts anytime from 4.30am depending how annoying/organised the night staff are feeling!). The hospital clowns (no, not the doctors, the ones with red noses and big shoes) came down the corridor today and William looked horrified, cried out and legged it back across the room to me and Grandma. Not much therapeutic value for him there. What is it that is so creepy about clowns? Congratulations to Carolyn, Kev and Harvey on today’s arrival Aeryn Faith, love and happiness to you all.