Friday, 9 November 2007
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, 8 November 2007
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, 7 November 2007
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, 6 November 2007
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.
Monday, 5 November 2007
The weekend
Saturday +37 and Sunday +38 and Happy Birthday Rob!!!!
A stressful start to the weekend thanks to British Rail and their engineering works delaying Robert’s arrival and then Accommodation services telling him that they didn’t have space for him. I went over and burst into tears in their office (for various reasons, not just to get a room you understand) and anyway later that day they did find space for him, which was great. I washed and tumbled all cuddlies due a sicky incident in the night. William was sick again mid morning and rather dramatically at 6am this morning, luckily all but 3 of the cuddlies were saved (Smudge, Smoky and Elgar are on their way home with Rob for another bath)! I had a trip to Covent Garden to pick up some shoes for Rob and it was heaving, so I beat a hasty retreat. We had a pleasant evening with pizza (we are such creatures of habit (although I did have a different pizza, I will have you know)). We watched a bit of DVD and then William woke up. He had been a bit unsettled and I thought that he had tummy ache so we got him some codeine but by the time the nurse had done his BP, taking his temperature and checked his pulse his was wide awake and bouncing around his cot like he’d been drinking espressos! (is that the plural of espresso?!) Rob left and I turned the lights off in an effort to encourage sleep but he worked out that the best way to get my attention was to stand up and pull at the milk feed and bag of TPN hanging just beside his cot and then try and press the buttons on the machines. Finding himself hilarious and saying “no no no” when I told him off. I couldn’t push the machines out of reach because the lines aren’t long enough and pull. Anyway he finally went back to sleep at around midnight much to my relief. William’s mouth has been a bit less sore today and we have tempted him over the day with 4 wafer biscuits and most of a portion (one of those hotel breakfast sachet type affairs) of blackcurrant jam! (it was spread on a rice cake but is better licked off it and scooped out of the little plastic container with a finger! Not your traditional diet I agree but desperate times and all that. I am hoping to see the dietician tomorrow as she failed to materialise on Friday to get some more food ideas. Today I went back to Covent Garden to exchange Robs shoes (which were faulty). I went about 11 to get there and back before it was too busy, it was quite quiet actually but that’s because the bulk of the shops don’t open until 12, duh! This afternoon Rob purchased some gluten free jaffa cakes and I asked housekeeping to portion them up for us (we can’t offer W anything from an already open packet, so its sachets, individually wrapped food or packets that they have split up and repackaged for us (just to keep as many of those germs out as possible)) but there was a knock on the door and they were mouldy in the packet so I shall be storming back to Holland and Barrett with them tomorrow, crying (not the teary kind, the assertive (but not shouty) kind) “my son has no immune system, he doesn’t need your fungus!!!” (or words to that effect!). There is another mum on the ward with whom I haven’t yet had a conversation without her saying “my son has no immune system” so it’s becoming a bit of a catchphrase!!! William has developed a rash (different to the other one which was really something and nothing) which is a bit dotty and bumpy and looks a bit like acne in it’s early stages and it may well be a bit of Graft versus host. Nothing to panic about (yet) they say a little is good blah blah so we shall see what the doctors say in the morning. Rob isn’t back until Thursday this week which seems a long time but we have Grandma from tomorrow morning until then to keep us sane. I am sad that Rob must spend his birthday evening travelling away from us but at least he will have the lovely Gillie for company later. At least 3 of us were able to be together for most of today and he and I did have a particularly nice birthday almond croissant for breakfast!!
A stressful start to the weekend thanks to British Rail and their engineering works delaying Robert’s arrival and then Accommodation services telling him that they didn’t have space for him. I went over and burst into tears in their office (for various reasons, not just to get a room you understand) and anyway later that day they did find space for him, which was great. I washed and tumbled all cuddlies due a sicky incident in the night. William was sick again mid morning and rather dramatically at 6am this morning, luckily all but 3 of the cuddlies were saved (Smudge, Smoky and Elgar are on their way home with Rob for another bath)! I had a trip to Covent Garden to pick up some shoes for Rob and it was heaving, so I beat a hasty retreat. We had a pleasant evening with pizza (we are such creatures of habit (although I did have a different pizza, I will have you know)). We watched a bit of DVD and then William woke up. He had been a bit unsettled and I thought that he had tummy ache so we got him some codeine but by the time the nurse had done his BP, taking his temperature and checked his pulse his was wide awake and bouncing around his cot like he’d been drinking espressos! (is that the plural of espresso?!) Rob left and I turned the lights off in an effort to encourage sleep but he worked out that the best way to get my attention was to stand up and pull at the milk feed and bag of TPN hanging just beside his cot and then try and press the buttons on the machines. Finding himself hilarious and saying “no no no” when I told him off. I couldn’t push the machines out of reach because the lines aren’t long enough and pull. Anyway he finally went back to sleep at around midnight much to my relief. William’s mouth has been a bit less sore today and we have tempted him over the day with 4 wafer biscuits and most of a portion (one of those hotel breakfast sachet type affairs) of blackcurrant jam! (it was spread on a rice cake but is better licked off it and scooped out of the little plastic container with a finger! Not your traditional diet I agree but desperate times and all that. I am hoping to see the dietician tomorrow as she failed to materialise on Friday to get some more food ideas. Today I went back to Covent Garden to exchange Robs shoes (which were faulty). I went about 11 to get there and back before it was too busy, it was quite quiet actually but that’s because the bulk of the shops don’t open until 12, duh! This afternoon Rob purchased some gluten free jaffa cakes and I asked housekeeping to portion them up for us (we can’t offer W anything from an already open packet, so its sachets, individually wrapped food or packets that they have split up and repackaged for us (just to keep as many of those germs out as possible)) but there was a knock on the door and they were mouldy in the packet so I shall be storming back to Holland and Barrett with them tomorrow, crying (not the teary kind, the assertive (but not shouty) kind) “my son has no immune system, he doesn’t need your fungus!!!” (or words to that effect!). There is another mum on the ward with whom I haven’t yet had a conversation without her saying “my son has no immune system” so it’s becoming a bit of a catchphrase!!! William has developed a rash (different to the other one which was really something and nothing) which is a bit dotty and bumpy and looks a bit like acne in it’s early stages and it may well be a bit of Graft versus host. Nothing to panic about (yet) they say a little is good blah blah so we shall see what the doctors say in the morning. Rob isn’t back until Thursday this week which seems a long time but we have Grandma from tomorrow morning until then to keep us sane. I am sad that Rob must spend his birthday evening travelling away from us but at least he will have the lovely Gillie for company later. At least 3 of us were able to be together for most of today and he and I did have a particularly nice birthday almond croissant for breakfast!!
The Fox Report
Monday +39
The consultant saw W this morning and isn’t too concerned about the rash, still it is quite hard not to worry. Otherwise it looks like Bristol is really full so we will have to go straight home instead…hoorah! They are sorting out getting us a pump and training for the milk, so that we can do feeds through the NG tube at home. Rob and I are having our ‘going home’ talk on Thursday which takes an rather comprehensive 2 hours. It doesn’t mean that we are actually going just yet but at least we will be ready. I am hopeful for next week if we keep on as we are. We will also start doing William’s many medicines ourselves under the supervision of the nurses so that they are confident that we are up to speed with flushing the tube and measuring quantities etc. William was a jumping bean again last night and didn’t want to go to sleep but was obviously feeling a bit icky as he was sick 3 times in 2 hours. Not too much each time but lots of cuddles and clean sheets! He crashed out at about 11. They are going to change one of his medicines (Cyclosporin) from IV to oral this week which will be interesting. They can measure the levels in his blood to check that his is absorbing enough and that it isn’t coming straight out of one end or the other. William has a new book with Thomas the Tank Engine that has several buttons that make a noise, Grandma had him in hysterics last night by jumping up to salute each time he pressed the fanfare button. It was hilarious, it was great to see him having such fun. He has drunk some water today and eaten a couple of wafers and slice of wheat free honey cake! I am still trying to see the dietician for advice, I think that they are happy for them to eat just about anything at this stage, just as long as they eat, there are baskets of chocolate and all sorts of goodies lurking in the fridge for some of the other children. Took my mouldy jaffa cakes back to H&B and did get my money back but am not sure that the assistant really grasped the concern that I had about taking mould onto a reverse isolation ward! However he did assure me that he would check the rest of the stock.
I think that for once in my life (no, not the thinking bit, wait for it) that I have said nothing when I should have said something. I didn’t know what to say and wasn’t sure, anyway I want to say how sorry we were to hear of Roy’s death and would like to send love and condolences to Mary and everyone who loved Roy.
The consultant saw W this morning and isn’t too concerned about the rash, still it is quite hard not to worry. Otherwise it looks like Bristol is really full so we will have to go straight home instead…hoorah! They are sorting out getting us a pump and training for the milk, so that we can do feeds through the NG tube at home. Rob and I are having our ‘going home’ talk on Thursday which takes an rather comprehensive 2 hours. It doesn’t mean that we are actually going just yet but at least we will be ready. I am hopeful for next week if we keep on as we are. We will also start doing William’s many medicines ourselves under the supervision of the nurses so that they are confident that we are up to speed with flushing the tube and measuring quantities etc. William was a jumping bean again last night and didn’t want to go to sleep but was obviously feeling a bit icky as he was sick 3 times in 2 hours. Not too much each time but lots of cuddles and clean sheets! He crashed out at about 11. They are going to change one of his medicines (Cyclosporin) from IV to oral this week which will be interesting. They can measure the levels in his blood to check that his is absorbing enough and that it isn’t coming straight out of one end or the other. William has a new book with Thomas the Tank Engine that has several buttons that make a noise, Grandma had him in hysterics last night by jumping up to salute each time he pressed the fanfare button. It was hilarious, it was great to see him having such fun. He has drunk some water today and eaten a couple of wafers and slice of wheat free honey cake! I am still trying to see the dietician for advice, I think that they are happy for them to eat just about anything at this stage, just as long as they eat, there are baskets of chocolate and all sorts of goodies lurking in the fridge for some of the other children. Took my mouldy jaffa cakes back to H&B and did get my money back but am not sure that the assistant really grasped the concern that I had about taking mould onto a reverse isolation ward! However he did assure me that he would check the rest of the stock.
I think that for once in my life (no, not the thinking bit, wait for it) that I have said nothing when I should have said something. I didn’t know what to say and wasn’t sure, anyway I want to say how sorry we were to hear of Roy’s death and would like to send love and condolences to Mary and everyone who loved Roy.
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