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!