Monday, 5 December 2011

Change? I don't do change.

Over the weekend our Jake went up a point on the Glasgow Coma Scale (GCS) from 10 to 11 (this is a measure of consciousness and you and I would have a score of 15, well most days anyway and there are a couple of people I know that I'm not sure ever get above 14).  He showed us some of what his medical team would describe as 'appropriate responses' and he seems to have shaken off his latest infection for now.

All of these things feel like progress, albeit very slow and I have started to settle into a routine, feeling safe and supported with Jake in his own room, at his hospital, with a team that I trust and know will always show him the highest levels of care, dignity and respect.

I have also started to get into a routine from a personal perspective; working most mornings, travelling up to the hospital each afternoon and hopping back on to the Northern Line to Sister in Law's flat, where both Sister in Law and Sister often are and where we laugh together and have conversations I'm not sure I'd be able to have with anyone else.  I only get home for 24 hours at the weekend, but life has definitely slipped into a workable routine and there is comfort in that.

Then yesterday we had the 'family meeting' with the Neurorehabilitation Consultant and Jake's rehab team to talk about what they have done, where we are now and the plan for the future.  Well I'm only human and sometimes ignorance is bliss as it allows you to focus on what is happening in the moment, without having to worry about what is to come and if I'm honest I'm not sure I wanted to know (if you saw 'RBS: The bank that ran out of money' last night you'll know how dangerous this approach is!) .  Anyway, this meeting was approached with what Sister in Law described as 'The Dread'. 

Unfortunately it is, apparently, considered to be poor form to sit in these meetings with your fingers in your ears going 'la la la, I can't hear you', so I assumed my 'grown up Charlie' disguise and sat with polite and earnest attention listening carefully as each of the therapists described what they have been doing to rehabilitate Jake (is it wrong that as they did this I wanted to shout 'just poke him a lot and threaten him with courgettes'?).  I asked some questions, shared some of my own observations and nodded encouragingly. 

And then they dropped it; the bombshell.  Assuming he stays infection free and they go ahead and move Jake's feeding tube to his stomach on Thursday, they will be putting him on the list to be transferred to Poole on Friday or Monday!

Now, I realise that most of you will be reading this and thinking 'what's wrong with you woman, that's good news' and I can see that, viewed logically, it is.  Well trust me, there is NO logic in a situation like this and I am feeling completely torn.  Although I know it will be good to be home, I have an impressive list of worries in response to this news; what if the team in Poole aren't as good as his team at St George's; what if his friends don't visit; who will I share my darkest and silliest thoughts with if Anna doesn't visit; how will his family cope with the distance; what if he's in a general medical ward whilst he's waiting for a specialist bed and they don't understand about brain and head injuries; what if I'm lonely?

Experience tells me that change is more often than not a really good thing; hopefully this will prove to be the case again.

1 comment:

  1. Oh charlie. Love knows no distance; friends, family & colleagues all will find a way - just as you have done these past weeks. Yvette xx