Get lost Pavlov

Hopefully those of you that know me would agree that normally I'm an optimist.  I look at a situation and think 'oh yes, all will be fine in the end, it usually is'.

I have clearly spent too much time recently with the harbingers of doom, otherwise known as Jake's medical team and have become conditioned to any chink of light being swallowed back up into the darkness of statements like 'we must remember that he has a devastating head injury', 'we just don't know how bad it will be' and, my personal favourite; 'are you sure you saw him do that, he doesn't do it when we're around'.  I have found myself questioning everything, only hearing the bad news and expecting the worst like I've been reprogrammed, it's all very Pavlovian.

And then today a little bit of the optimism and positivity broke through and yelled at me to pin my ears back and start listening for the good again.

I get a sense there’s been a subtle shift and suddenly there are statements like 'we're surprised at how well he's doing', 'that's a response not a reflex, a really good sign', 'Jake will definitely be a speaker' and 'that's really normal, don't worry about it'.  This is still peppered with the ever repeated 'it's still early days' and 'there's a long journey ahead', but this shift in tone is wonderful, so I'm re-programming myself back to being an optimist; Pavlov can bugger off.

The changes from last week are also subtle, but he has now conclusively proven that control of his right hand is improving by using it to pull his feeding tube out... twice.  He is also making more noises than before which apparently is also a good sign.

He still spends at least 70% of the day asleep, which is 'really normal' and is not yet physically capable of sitting up, talking past a couple of mouthed words or following simple requests and sometimes he is completely unresponsive, but there seems to be genuine optimism for his recovery which was never more evident than this morning when one of the physio team responded to my announcement that 'I've decided to work on the basis that he's going to make a good recovery' with 'you go for it'. 

Well hello there Mr Optimism, welcome back my old friend!

Fear, guilt and a Brucie bonus

I'm embarrassed to say that I made a bit of a fool of myself on Saturday night. You see the thing is, in a situation like this you're so focussed on 'being strong' and 'taking it one day at a time' and it's so relentless that you don't necessarily deal with stuff that needs dealing with.  It seems that I hadn't dealt with the terror of the first 12 days where we genuinely thought we might lose our boy.  Well, on Saturday night this fear decided it needed to be heard... in a pub... in front of friends and quite a few strangers, no doubt emboldened by a couple of pints of Stowford Press.  I won't go into the details if you don't mind, but rest assured that I have learnt an important lesson about not bottling things up!

The other thing about situations like this is the guilt; it's very sneaky and cunning the guilt. It creeps up on you and seeps its poison into your thoughts.  So far I have guilt about the following:

·         I should have called him from the services on the way to work, that may have delayed him (reality: he'd told me not to the night before)

·         I should have made him wear his helmet (reality: have you met Jake? You can't make him do anything)

·         We should have bought the overpriced Halfords battery for his car rather than ordering a more reasonable one on line, that way he could have driven to work (reality: there is nowhere to park, so he'd have cycled anyway)

·         I shouldn't have pushed so hard for us to move this year, that way he'd have been cycling from Molesey and would most likely have reached that roundabout at a different time (reality: he pushed just as hard and was just as excited as I was)

·         I wish we'd had more fun and been less focussed on saving (reality: we were working towards our dream and we did have fun)

·         I wish I'd been a better wife (reality: this is one for Jake to answer!)

I know, I know, these thoughts are about as helpful as Alastair Campbell at a morality conference, but there you go, that's guilt for you.

Anyway, enough of the fear and the guilt; I know that the only reason you have trawled through all the guff above was to get an update on our Jake.  I'll be honest, I'm nervous about what I'm about to say, because I don't want to plant false hope... but he's MUCH better.  Now, we need to stay grounded, and not get ahead of ourselves as he's still very poorly and the future is still very uncertain, but he really does seem to be improving.  We have smiling, attempts to talk, stroking arms, one armed hugging (the left hand side is much stronger than the right); he's trying to lift himself and is remarkably good at letting us know when he's annoyed.  The tracheostomy is apparently being removed today (woo hoo!), he has been moved to a specialist head injury bed where they are really starting to push him (see previous comment about being annoyed!) and the whole mood is much more positive. 

"But what's the Brucie bonus thing about?" I hear you say (yes, I'm hearing voices).  Well, so that I can stay sane and get my head around what the future may look like, I am taking a sort of mental picture of his progress and capability each Monday and then coming to terms with what life would be like if his progress stopped there (they are absolutely not suggesting that this is the case), this means that each new forward step is a bonus... a Brucie brain injury bonus in fact!

Keep up the positive vibes please x

The story so far

Yesterday Jake was visited by a good friend who has been following his progress through Facebook.  He was clearly shocked by how poorly Jake is and I realised that I may have been unconsciously painting a vague or even misleading picture of what we're dealing with to protect people.

It's a tricky one this, because Jake's is a brain injury we genuinely don't know how well he will recover and we stay sane by being as positive as possible and the last thing I want to become is a doomsayer!  At the same time, he's not just my Jake, lots of people love him and deserve to be kept in the picture.

So, I thought it would be useful to give a factual overview of what has happened, where we are now and, as far as we can say, how we hope to move forwards.

Jake's initial injury was a fracture at the base of his skull.  The complications came from a series of bleeds, clots and severe swelling of his brain.  He had 8 hours emergency surgery that saw two large sections of his skull being removed to release the pressure, one on each side of his head.  This looks pretty extreme, but will eventually be reconstructed using titanium mesh and plates.

For the first 48 hours after the surgery he was sedated.  After that he was in a coma for a further week and remained at terrifyingly low level on the Glasgow Coma Scale for 12 days in total; we were left in no doubt by the medical team that this was a very bad thing.

He clearly heard all the negativity and started to improve on day 13.

Today is day 23 and Jake has been moved from Neuro ITU to a Neuro high dependency unit.  He sleeps a lot and, when conscious has some awareness of who we are and understanding of what we say to him, looks at you and follows you with his eyes, has limited movement in all his limbs, smiles and is trying to communicate.  He is still not yet able to consciously follow instructions (to put his thumb up, stick his tongue out or lift his arm), all things he can do unconsciously.  His breathing is still assisted through a tracheostomy that they are working to wean him off and he is currently being fed through a tube in his nose; both of these tubes annoy him immensely!

The next step, once he has recovered from the chest infection that is laying him low at the moment, will be to move him to a specialist brain injury ward where a dedicated, expert team support just 8 brain injury beds.  This will enable them to assess his progress so far and then we will meet as a family with this team to discuss his rehabilitation, which will be in Dorset where he is registered.

Recovery from an acquired brain injury is a very slow and uncertain process.  We can't at this stage say what type or scale of long term damage Jake has suffered, but we know that this is likely to include some form of physical, cognitive or behavioural deficit or a mix of all three (http://www.headway.org.uk/ is a great place to go to get to grips with this).  His team (who are amazing) have told us that he is progressing faster than expected, so there is a great deal of hope.

What I can tell you is that our Jake is definitely still there.  His personality and determination is showing through and every time he smiles at me or puckers up for a kiss my heart soars.

Jake now needs buckets of time and the continued love and support of his friends and family, so keep up the positive vibes and pay him a visit if you can.

If you have any questions at all, please get in touch and I will do my best to answer them.

a new reality

Can you believe we are on day 20? 

I was walking along the South Bank with Mum today watching people getting on with their lives; office girls excitedly gossiping, runners pounding along the Thames Path and huge swathes of school children snaking along ready to break free from the herd as soon as one of the harassed teachers looked the other way. 

As we strolled along my phone rang and I had another frustrating conversation with the Police, which follows the equally frustrating calls to the bank and Jake's mobile phone company, conversations with the pensions manager, emails to the union and internet research on specialist brain injury solicitors.  It suddenly struck me that to all the office girls, runners, school children and harassed teachers I am just another person talking on their mobile, getting on with their day.  They have no idea of my reality, just as I have no idea of theirs.

And that's when I realised that I am not drowning anymore, I am coping, quite well.

So, this is my new reality; I have a husband who is very poorly, but making remarkable progress when you consider the extent of his injury, the 8 hours of brain surgery and the lack of bone left in his skull (he has a delightful sticker on his head which reads 'no bone flap' in case anyone forgets!); I have an awful lot of 'stuff' to co-ordinate, but then I love to organise things; I still have a good job that I am hoping to ease back into over the next few weeks and I have discovered that people are the best of themselves at a time of crisis and Jake and I have some quite extraordinary friends, family and colleagues.

As ever, thank you for all your continued support, wishes, prayers and crossed fingers; please don't stop now!

A little bit of hope goes a long way...

One of the most gut wrenching things about this rollercoaster is that for each new triumph there is fresh terror and the trick is to bury the terror so you don't overwhelm the triumph for everyone else. Over the last 4-5 days the terror I have been trying to hide was that Jake would never really regain consciousness and that the journey ahead would be done to him, rather than travelled with him. My Jake would hate that. But he is a fighter and yesterday hope went up when my amazing Jake not only responded and showed signs of consciousness, he spoke to me. 'Are you alright' I clumsily asked; 'yes' he whispered through the speech box placed on his trache. 'I love you' I blurted in shock, 'I love you too' he quietly replied. Those who know me can imagine how spectactulary badly I managed my response and I am sure I scared the proverbial out of staff, visitors and other ITU patients. He's been moved out of ITU now to a high dependency unit on a neuro ward and so there are now new people for me to irritate! This new step has shifted all of our worlds and given us fresh hope for the future, but we are far from home free and now must wait to see the extent of the physical, cognitive and behavioural damage Jake has sustained. The journey ahead will surely continue to be a long, terrifying rollercoaster, but at least today we are starting on an upward curve.

Appropriately inappropriate...

Tomorrow is day 14. When you hear people say 'it's like living in a bubble' or 'time has no meaning' it all sounds a bit melodramatic, but believe me when I say that the past two weeks have been like living in an alternate universe...one where the heating is on too high and copious cups of tea are mandatory.

Up to now we have ricocheted about in shock, but today was particularly shocking as, after two weeks of having the worst case continuously replayed and reinforced, the messages from the medical team abruptly changed to be about moving him out of ITU, rehabilitation and the future. They are still keen to stress that 'he's not out of the woods yet' and 'there is a long and difficult journey ahead with no guarantees' (cheerful bunch), but this change in tone and expectation literally left us speechless...which is fairly unexpected in itself!

All this is both joyous and terrifying, but mainly amazing as it means we are at the start of a journey and not at the end of one as we had feared.

During this time it is the inappropriate that has kept us from crumbling: the bad jokes, ill time questions and innocent yet jaw dropping comments have ensured we continue to giggle and tease each other. My favourite form today is courtesy of my sister who, on setting out from work for the hospital this evening announced that she hoped to be there 'before knocking it on the head time'...priceless, my Jake will approve!

Giving up on giving up

I came home last night to do some washing, check the post and basically have a bit of a break.  Doing this splits me in two; on the one hand I absolutely needed to be away from the hospital to take a breath and get some perspective. On the other hand is guilt; what if something happens and I'm not there?

The lovely Andy drove me down to Dorset, whilst his lovely wife Fiona stayed in London and went to see my Jake.  We had a meal with my family and then all trouped down to Poole Quay for the fireworks.  We laughed and drank in equal measure and I can certainly feel the effects of the alcohol this morning.  I just wish the effects of the laughter would linger in the same way as being home without him is tough.

Aside from a hangover, what coming home has given me is fresh resolve.  As the consultant keeps reminding us, Jake has a devastating brain injury and we are less than two weeks in.  I have felt myself over the last few days giving in to the worst possible outcome and this isn't good enough.  One thing I know about Jake with absolute certainty is that he is a fighter (some might say a determined and stubborn bugger).  He is the person I love most with every part of who I am and I am not giving up on him yet.

So keep praying, wishing, hoping and crossing your fingers because Jake's fight isn't over yet.

Has it really been over a week?

On Wednesday 26th October my Jake was knocked off his bike on the way into work. He wasn't wearing a helmet.

The last 8 days have been a kind of tourture; if Jake had suffered any other injury we would by now at least know what the future holds. But Jake's is a severe brain injury and nobody, not even the extraordinary neuro surgeons, know what will happen next.

Every day my beautiful man is prodded and pinched so they can measure his reactions and try to create enough of a picture to decide what to do next. This means that we are all fixated on every breath, flutter of eyes lashes, flexing of hands and toes, desperately trying to make some sense and force some hope.

But the hope goes up and down. What seems like good news one day becomes bad news the next day or even hour when things are static or slip back. Small changes create a rush of hope and excitement that lifts your heart but then inevitably, something that you notice or is said grabs you just beneath your ribs and pulls you sharply back down to terror.

I am not on this journey alone and friends and family are holding me together both physically and virtually and who knows, maybe today hope will go up.