§ The Limbo Dance: signifying an emergence from death to life. §
19 September 2016 – Email Update to friends and rellies – NHS care is doing the trick
Feeling a bit better
Just a quick note to say that, after two horrible days of high temperatures and experiencing the rigors associated with a high temperature, John is beginning to feel a bit better. His temperature overnight last night, and again during the day today, has stabilised and he is a lot calmer than he was. He’s even managed a smile and been able to keep his beady eye on us today as we’ve gone about caring for him. He has also had a bit more conversation with his visitors – me, and the boys at various times – as well as the nurses.
Testing, testing, testing...
The doctors are still doing tests to see what the cause of the temperature has been and, having taken his Hickman line out yesterday, they sent it off for the microbiologists to do their studies on it to see if there is anything lurking there…… So far, there has been a suggestion of a bug in his blood but that hasn’t been fully confirmed and, horror of horrors, John has had a day or two of a runny tummy which they are now investigating. For us visitors and carers, this has meant ‘gowning up’ when we go to see him, which has caused us some amusement – gloves sometimes, yellow apron (very fetching) and the glamorous masks which prevent the already ‘hard-of-hearing’ hardly hearing anything that you say very much!! Coupled with some frequently foreign accents among the nurses in particular, we have been playing an exciting game of Chinese Whispers. Who’d have thought being poorly could create such fun?
The amazing NHS – keeping tabs on things
John is in a room all to himself but not on the normal haematology ward (Ward 19) because there are no beds there. He is on the Cystic Fibrosis ward, where the patients all have rooms rather than 6-bedder bays. It transpires that there are quite a lot of haematology patients on the ward – goodness me, haematology are busy!!! His doctors are directing operations remotely, as it were, but coming to see him every day and instructing the nurses on the CF ward how to deal with the various problems that arise. They are looking after him very well, even though some days they are a bit short-staffed. I think they are quite grateful for me being there (I know John is too) as it saves them some of the running about.
We know that the doctors would like to get John moved to Ward 19 ideally, and they are shuffling people about, but at the moment, I think as he is no longer in quite such a critical state they will leave him where he is for the time being. We have no idea about a discharge date because, although they have changed John’s antibiotics to deal with the bug they’ve found in his blood, there may be more changes yet, depending on what all the numerous cultures they are cultivating show. I think he almost needs a lab of his own as they have definitely taken samples and swabs from every available area – enough to keep an army of microbiologists busy!!
The chef may quit
I have told John though, that if the tummy bug turns out to be campylobacter again, I am quitting preparing and cooking food for him for ever!!! I know he hasn’t had any raw meat or dirt in his vegetables/salads since his transplant; and I have been scrupulous in hand-washing etc, so whatever little devils have been shimmy-ing around at home need a good seeing to!!! I shall be on the warpath, so they’d better watch out!!
Wonderful friends and rellies
Once again, thank you everyone for your good wishes, prayers and thoughts. At times, it must seem like ‘Really? I can’t be bothered to send more best wishes again’ but I promise you, it’s what’s keeping us going. The kindness of friends helping us out, and just a few kind words make all the difference.
More to follow when there is something to tell.
With love, Anne