Madness from Fox

Tuesday + 54
W and I had a shocking nights sleep. We had IV medicines a plenty plus his 3 weekly Immunoglobulins (which run for over 3 hours). He had a tummy ache too so I got him some codeine about 1am which has a similar effect to caffeine on him. Just before 3 he stopped bouncing around and went back to sleep. After disruptions to numerous to list and lots of beeping machines I had my best (and longest) sleep between 7 and 9am. We are having an ECHO ultrasound tomorrow (they thought it would be today but after waiting around they decided about 4 to tell us that it would be tomorrow) to rule out other possible causes of his faster breathing. They are fairly sure that it is because he is losing too much Sodium Bicarbonate through his stools (ooh get me and my medical terminology) and that this is affecting his blood gas. They have adjusted his TPN to include extra so that he should manage without the extra doses that he has been having from tomorrow. Hopefully when (!?) his fluid losses fall the balance will be re-established. Otherwise Mum has joined me until Friday with her invaluable pair of extra hands.

Wednesday and Thursday +55 & +56
William had an ECHO in the morning and they brought the fancy machine to us. With the help of Grandma, Thomas (the tank engine), Hamish (the highland cow) and Lamby (yes, you’ve guessed it, the Lamb) William managed to lie reasonably still for just over half and hour whilst they took lots of images of grey and black swirly stuff and some blue and orange bits (apparently there were shots of his liver and heart but it could have been anything!) Anyway the conclusion is that his heart is fine, phew! (and double phew!). I had a lovely lunch with Granma and Poppa who came up to visit me and we wandered over to Covent Garden too. On our way back we bumped into Claire, Adrian and Lucy (our former neighbours) I was delighted to see them all looking more relaxed and well and hear that they are getting on ok (thanks so much for getting in touch, if you are finding time to read this, which I doubt!). In the afternoon one of our new Immunology doctors came by and had a look at William and proclaimed him lovely! He slept for an incredible 3 hours on Weds afternoon, which was weird but we both also slept much better last night too. He has been quite perky today although briefly managed a temperature of 38. We were summoned to a parent/carers meeting this afternoon regarding infection about which I got a bit stressed and did lots of pacing but as they only gave us an hours notice, the meeting clashed with the new consultant doing her rounds so I got let off the hook and sent Mum instead! (The play assistant also put in an appearance during this very busy hour) Anyway the consultant says that his skin is GVHy and his liver function test is a bit skiwhiff for the last couple of days so they may give him a dose of steroids tomorrow if the ALT’s (whatever they are) are not improved. Also they would have anticipated more of an improvement in the diarrhoea with the cessation of all eating and think that it may be partly GVH too. Good oh! The nappy situation seems a bit better today so I hope that it will continue to improve. He did have some more Sodium Bicarbonate yesterday and they explained that they are only helping to top up the levels and not achieving normal levels which his why despite the Sodium his breathing is still so fast. He is expelling the unwanted stuff by breathing it out. Hope that’s all clear (if it is, can someone pop round and explain it to me!?) Grandma coped admirably as the Curtis advocate at the meeting which turned out not to be the gripe fest that I had anticipated and there was the opportunity to offer constructive criticism. Everyone whose child does not have the Novo (sp?) virus is obviously very concerned (as I would be). It lives on surfaces for 72 hours and is everywhere (!) (not just on Fox ward!) Mum did tell the other parents at the meeting that William had the virus since 8th Oct but fortunately everyone is still talking to us! We were questioning why it had taken 6 ½ weeks for them to spring into action; Jack has also had the virus for at least 3 weeks. William and Jack’s cases may be unrelated and equally the more recent cases amongst the staff may not be linked to either Jack or William. Our fab ‘in the week’ cleaner didn’t do the floor yesterday and we thought he had forgotten but it turned out that he didn’t do any of the floors because they had run out of mops (they have changed to chlorine bleach and disposable mops). How can they not get the floors cleaned on a ward that is ‘closed’ due to a virus?????? They are cleaning the corridor tomorrow (probably) so we need to clear out our lockers and they have turned the nurses room upside down cleaning it. On the grapevine I hear that 13 members of staff have been sick, yet none of the carers/parents!?!?!?!?!? Anyway the new woman next door is fuming, they are private patients (although there is a private BMT ward so I’m not sure why they are here, but I digress) and have paid about ½ million Euros for the treatment here and are shocked to find themselves on a virus infected ward (also griping about having to change her son’s cot sheets, which us common NHS patients do anyway! I hope they get extra nursing hours to cater for their extra ‘needs’ otherwise the nurses will just have to do more or make sacrifices elsewhere). Justina next door was fuming big time just now, she had waited all day for them to change a Hickman line dressing (which only takes about 5-10 minutes) because it had come loose and it is dangerous like that. They were short staffed today but nobody bothered to explain that to her and I wouldn’t like to be on the receiving end of her fury and she had waited an hour for them to answer her buzzer. The TPN has only just gone up and it is almost 9pm. The night staff are now trying to smooth ruffled feathers. Well a rather stressful day all around but William is breathing peacefully now and we have finished with the 3am meds for the moment so we look forward to a more restful night and day tomorrow.

Friday +57
This week has been so tense making, we have lurched from wonky blood gasses to suspected fungal infection and possible CT scan to an ECHO to rule out Pulmonary Hypertension to starting steroids for GVHD I can’t bear to think what they might throw at us next week. William’s liver function tests came back high again so they have started him on Methypredisolone which is a steroid that will suppress his immune system to stop the fight that is causing his liver the problems. Unfortunately it will also hinder his fight against the virus and has a number of side effects including bloating of the face and tummy, high blood pressure and increased appetite (not sure how that last one will manifest itself at the mo). Not sure how long before we will see some of these things but it will be a few weeks of treatment. William’s Cyclosporin has a rather bizarre side effect and is currently boosting his eyebrow growth and he is now sporting a darker, more bushy look that is very fashionable on Fox ward this season (and most other seasons too). I think that this is a fairly usual occurence to need steroids at some point post transplant so we are trying not to be too concerned just yet. His diarrhoea has not improved as much as I had hoped after an almost nappy free changing night and his blood gas is all over the shop this evening so they are topping him up with some more IV fluids and he may have some more Sodium Bicarbonate. Well the corridor clean has gone ahead so is all sparkly and germ reduced. I cried, actually sobbed would be more like it earlier when I found out that they had confiscated my ‘spare’ chair, apparently we are only allowed the one allocated per room (not the additional one that I acquired several weeks ago). Justina next door and I had found it very useful cos there are often two of them too and it means there is, well I’m sorry this is really dull and a lot more complicated to explain than I had first envisaged so I shan’t go on and I am sure we will manage fine but it was the straw that broke the camels back. I was quite worried that a nurse would come in an think that I had taken leave of my senses crying over a chair but I can laugh, well raise a small smile about my ludicrous behaviour now!

Saturday +58 and Sunday +59

Saturday +58 and Sunday +59
Well things got progressively worse last night (not with William), I can’t believe that I was worried about a chair!!!! The ‘acting’ plain clothed sister came round with a letter saying that we are no longer allowed to eat or drink in the corridor amongst other things. They suggest that you ask the nurses to listen out for your child (there are speaker phone type things) and that they will come and get you if you are on a pre arranged break. I simply don’t believe that this is feasible especially as the busiest time on the ward is between 6 and 8pm and that’s when most people want to eat. I am not happy to be away from William when his has lines running to his Hickman line which has a repair on each side. Only the other day a nurse told me about how they had found a child covered in blood where he had twisted himself in his lines so much in his sleep that he had damaged his hickman line. That is SO dangerous and happened within the last few weeks to a child not much older than William who was being supervised by the nurses overnight. The older children can be more easily left because they can ring the bells for assistance and can learn and understand why they are not to pull at their lines but you still can’t guarantee how long it will take to a nurse to turn up to see if they are alright. The situation is highly unsatisfactory and now means that we have to eat in shifts away from the ward in a grotty room with 2 small dirty, soggy sofas and no windows. There could be up to 40 people eating in that space if each room just had 2 of their 3 carers on the ward. Anyway in the wee small hours of Saturday night I woke up and wrote down our concerns regarding this and some other issues in a letter which I am getting Mum to print off at home and will give it to them on Tuesday. I felt a bit better and constructive after writing it having felt utterly miserable and powerless. I appreciate that they are trying to protect the children from infection and some of the changes around the place are really positive and overdue but it is so hard to relax and maintain relationships here that it just feels that they are taking even more away from us and I want them to at least appreciate what the changes will mean to families. Rob and I did had a nice Saturday evening watching a film on the laptop and William slept soundly through most of it. I was a sad and grumpy bear on Sunday, not cheered by eating alone and spending a not inconsiderable time sat next to a tumble dryer doing the laundry (the change in Rob’s visiting patterns means that I can no longer take advantage of Granma Curtis’ superb laundry service, boo). We cheered ourselves considerably in the evening with secret consumption of chocolate in the room (!!) and watching my extravagantly purchased box set of Cold Feet. It made Rob laugh so hard that he woke William up!!!

Breathless in London

Friday 16th +50
Today we had our first excursion out of the room for 57 days! We were expecting a repeat x ray but were most surprised when our nurse turned up and said ‘lets go, they are waiting for us in x-ray’. Once Mum and I had recovered ourselves, she did explain that they get a better picture and that it had been checked with Infection control so off we went with time to grab a jacket for William. He was a bit overwhelmed by the short trip down the corridor, into the lift, then a hundred yards or so on the other floor and back. He was wide-eyed and clinging on to me. Those 57 days have obviously had an effect, we will need to introduce him gradually to the outside world again and I’m sure it won’t take him long to readjust. William was sick again today but just after they had dumped 100ml of water in his tummy so it wasn’t that surprising really but unfortunately most of it went over Grandma who rushed back in as we were stood watching him through the window with the consultant at the time (She had to have a shower later to wash those germs right out of her hair!). He does have a nasty cough but the x ray showed that his lungs are no worse. They are going to rationalize his antibiotics to see if that helps with the diarrhoea because contrary to my earlier optimism things have not improved. It seems likely that it will take a couple of weeks (possibly at least, but hopefully not at least) to get back on track and homeward bound if we don’t have any other set backs.
I feel, for the first time that his care has been mismanaged today which is disappointing. The nurse gave him his antibiotic (the purple face inducing one) without the Piriton first and at twice the rate he has been having it. I did notice the rate difference but not until mid way through because he had been asleep and he was a bit red when he woke up. Fortunately the reaction was milder anyway but it does make you worry, although she did apologise for her mistake. Also the Doctors instructions about his fluids have been ‘misunderstood’ and she has just been in to explain that he is a ‘bit’ (! Quite a lot I should think if she felt the need to come and mention it) negative with his balance and they have just chucked some more IV fluids up. His hands and feet are cold and are slow to recolour when squeezed (and have been for a while now and his breathing is quite fast) these are signs that often accompany a temperature and indicate infection (because all the white cells are gathering at the infection site and miss out the extremities) but also can be a sign of dehydration so in W’s case it may be a bit of both. Fortunately nothing serious but it knocks the ‘blind faith’ that you need to have in those making the decisions and interpreting them.
Rob is arriving later bringing my favourite cheese and tomato topped circular bread based product and is staying (in a dad’s dorm of 3!) so it will be great to have him around.

Saturday 17th +51 Sunday +52
Last night they tested Williams blood gas and things were a bit skiwhiff so they gave him some Sodium Bicarbonate. He has since had 3 more doses which will help him balance his pH. His breathing has been fast again, he had those cold fingers and toes and he had a temp of 38.2 on Saturday afternoon so Rob had a visit from the weekend consultant (now that’s alarming) and they decided to continue with all his antibiotics and have added an IV anti fungal just to be sure they have all aspects covered. The first dose required an even smaller test dose which, of course ran up to midnight and then the dose for an hour or so after that. Why do we always end up starting these new things at night!? Since then his temperature has been more stable but a bit higher than average. His nappy situation has not improved and he is having ¼ replacement fluids. He has been perkier today (Sunday). The weekend Doctor has been very thorough and popped back to see all the children before she left which was very impressive, although we prefer to not see the Dr’s more than once a day cos usually it’s not a good sign! I met Tasha at the V&A for a wander around and a chat, we did more chat than looking (which is the way it should be) and it provided a nice backdrop. Rob and I have been eating expensive (but delicious) takeaways all weekend because of the kitchen closure. It will have to be pot noodles for the rest of the week as we have blown the food budget. The nights have been quite disturbed with the late anti fungals and the 3am antibiotics continuing and we still have the 6 ish IV’s as well as the 4 hourly obs and he has been a bit restless and needing extra nappy changes.

Monday + 53Rounds today and I’ve changed my day during the week to come up to see William and Cath and it’s a chance to meet the consultant, only he didn’t come! The news from the rounds is William may well be here for about another four weeks until he is able to tolerate a level of milk feeds and get off the TPN without getting dehydrated. They are giving the graft the best chance to fight the virus by reducing another of the immunosuppressants. Unfortunately there is not much else that they can do. At least we are only fighting the virus, his blood results indicate that the transplant remains a success and the virus is the cause of the diarrhoea rather than GVHD. William has come off one of the antibiotics and will come off the anti fungal in the next couple of days as the doctors now believe that W’s fast breathing is due to the acidity of his blood caused by the diarrhoea. The day has been spent hooked up to try and get more fluid into him but this has not stopped him playing when he felt like it. We will probably be transferred to the care of the Immunology Team rather than the BMT team but we won’t be moving rooms because of the virus. I don’t think that this will really make much difference. We are obviously disappointed by this lenghthening of our stay but as you hear so often on Grand Designs, we really hope to be home for Christmas.
We do not normally like to list what people have given William during his stay at GOSH as everyone has been so kind but a big thank you must go to B for the lovely suprise of a get well card from William's favourite sheep dogs down in Devon. When I got home there was also a large package containing a Photograph of all the dogs from Borough Farm. So I'm off to buy a frame so it is hung ready for the master return.

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.