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.