Amazing people

Everyday someone tells me that I am ‘brave’ or ‘amazing’ for ‘being strong’.  The reality is that I am none of these things.  Jake’s family and I are just keeping on keeping on; we have no choice, we are simply dealing with what we have in front of us each day.

The amazing people are those who choose to be there.

My family have been wonderful; from making sure I am not alone when we are at a moment of crisis to postponing Christmas so that I could be with Jake Christmas day (special mention goes to my nephews who chose not to open their presents until we celebrated on the 27^th!).  I am also embarrassed to admit that I have been foul to my mother and sister at times and they have met this with good grace and humour.

Our friends have shown themselves to be resolute and true.  They visit Jake often, ensuring that he is never left alone if I need to be away, humour me endlessly, keep me entertained and are consistently thoughtful and supportive.  The Woods have been my particular saviours, even making sure that Santa knew where to find me on Christmas morning!

My employers and colleagues have allowed me to be completely absent for the past nine weeks and are unfailingly gracious in picking up my share of the work without complaint (I happen to know it’s been very busy, but they all shrug this off if I mention it).

Then there is the St George’s neurological team.  It’s not just their medical knowledge and expertise, but also their faith in Jake’s ability to recover and their care not just for Jake but for those of us that love him.  Sometimes their communication leaves a little to be desired, but for all their brilliance we can forgive them that!

Of course, the most amazing of all is Jake and I am sure you are keen for an update.  There was much excitement yesterday when, having had the shunt adjusted the night before, Jake was more awake than he has been since his accident.  He then dipped again and has remained flat since yesterday lunchtime. The theory is that as the shunt drains off the excess cerebral spinal fluid, a subdural gap develops which fills with a different fluid (the one they drained off when they drilled into the cranioplasty last week).  We understand that getting this balance right is very difficult, sort of like trying to balance a spoon on the blade of a knife, in a storm, blindfolded.  So that is the current challenge, he’s certainly keeping them busy.

This is unbelievably frustrating as it feels as though they will never be able to stabilise Jake.  The medical team clearly don’t feel this as they keep moving ahead, trying new things and staying focussed on his recovery. I wish I could remove the terror, be rational and remember that they warned us that it would be a long, rollercoaster of a journey which we are just at the start of.  Instead I will keep on keeping on and try not to be dismissive or ungracious when someone tells me I’m being brave, amazing or strong.

SNAAAAAKE!

Sister is right, it's not a rollercoaster, its a game of snakes and ladders. In the first 5 weeks we went up some ladders and down some snakes, but overall the ladders were longer and we slowly made our way up the board.  Then three weeks ago the dice turned on us and we started to see more snakes.  This led to a decision to bring forward the cranioplasty to Monday to try and halt the worsening hydrocephalus and get Jake's rehab back on track; a scary but hopeful time.

All seemed to have gone to plan and although it was difficult to find ourselves back in ITU, Jake started to show some progress... and then we hit a really big snake; on Tuesday night Jake developed a new bleed under his new cranioplasty.  Cue a rush back to surgery and his shiny new cranioplasty had two holes drilled into it to relieve the pressure.  They brought him back to ITU expecting him to pick up quite quickly but unfortunately he remained 'flat' as they call it.  After more CT scans, test and x-rays they discovered that his right lung was literally full; that'll be pneumonia then!  This all took place over 4 hours and culminated in Jake being intubated, again; I am continually amazed by how strong he is and that his poor body continues to cope.

Fortunately he was on the ventilator for less than 2 days this time, they have managed to clear his chest and he has started to slowly wake up, opening his eyes, making noises and moving his hands.  Hang on, this all sounds very familiar?  Oh yes, that's right, we're back where we started!  Gutted.

Hopefully our stay in ITU will be shorter than last time (it wasn't where I had planned to spend Christmas day!), the medical team are certainly less bleak this time around and, as Sister in Law said, he does seem to be getting a good return on his National Insurance investment!

So, whilst you are tucking into your dinner tomorrow, please raise a glass (or three) for Jake's recovery and a very different Christmas 2012.

Have a wonderful Christmas, make the most of the time you have with your loved ones and don't worry about over indulging; life is WAY too short to worry about such things at this time of year, so enjoy, I insist!

Stop the ride, I want to get off!

My head is spinning; the last 4 days have been like an exaggerated version of the last 7 weeks.

On Saturday morning I popped in to see my lovely Jake before starting my weekly journey back to Poole for the night. I made it home just before my friend was due to arrive for an evening of 'Strictly' and pizza. And then the phone rang. Jake's chest infection had worsened and they were talking to Neuro ITU to see if would be appropriate to move him back to an ITU bed and they promised to call back once the consultant had visited Jake. This is the point that you realise you've let your guard down, hold your breath and the piece of string that you had forgotten was attached to the bottom of your ribs is sharply tugged.

They called back and reassured me that the consultant thought Jake would be OK, didn't need to be moved and that he didn't think it was worth me racing back up to London. Sister in Law confirmed that she would go and sit with him, so pizza was ordered and 'Strictly' was watched.

And then the phone rang, again. Jake's infection had developed into sepsis a "severe illness in which the bloodstream is overwhelmed by bacteria causing major organs and the central nervous system to stop working properly". His pulse rate soared to 150, his BP plummeted to 80/40, his oxygen saturation was dangerously low and his temperature peaked at 39.1. I don't want to be melodramatic, but you have to realise that sepsis is incredibly dangerous if you are fit and well; Jake is still very seriously ill.

At this point I'd had a couple of glasses of wine (I won't be doing that again!), so fabulous, teetotal friend stepped in and we raced back to Tooting, which is an awfully long way out of her way!

At the same time that this was all going on Jake's head filled with CSF (cerebral spinal fluid) and it was unclear whether this was caused by the sepsis, the hydrocephalus they'd already identified on Monday's scan, or a bit of both.

The next 24 hours were terrifying as all we could do was hold his hand and will him to fight, which he did, magnificently. In fact one of his lovely nurses declared that she has never seen someone get over sepsis so quickly!

So, we arrived back at Sister in Law's flat on Sunday night feeling a little less terror. And then the phone rang, again. The neurology and surgical registrars had been looking at Jake's latest scan and felt that they needed to do something about the CSF, that they were going to do another lumbar puncture and Jake would be nil by mouth overnight in case they "needed to do more surgery". You have to remember that Jake was still fighting off sepsis, so the suggestion of putting him through more surgery at this stage seemed crazy. Consequently Sister in Law and I had a horrendous night fighting off evil thoughts and called the hospital in the morning to be told that nothing had happened as the Neuro ITU consultant had been back and pretty much said 'why would you put him through more surgery when he has sepsis, that's crazy'!

So we reach Monday and the long planned visit of Mother in Law, Father in Law and Brother in Law; this is a big deal due to various health issues and we were a little worried how this would go in the context of a very difficult weekend for Jake. Well, I don't mind telling you that it was just about the most moving thing I have ever seen and it reminded me that sometimes, you just need to see your Mum. Jake was alert (I don't know where he gets this extraordinary strength from, but I'm very grateful), gazed lovingly at his Mum, reached out to hold her with both his hands and smiled for everyone. He's amazing.

By this stage everyone (especially Jake) was exhausted and you might think that this would be the end of my tale; sadly not.

Yesterday we were booked to meet with the Consultant Neurosurgeon (the big cheese) who wanted to talk to us about the plan for dealing with the hydrocephalus. Please believe me when I say that I have enormous respect for all of Jake's medical team, who are all amazing; this bloke, however, was a (insert offensive word here). The objective of the meeting was for him to advise us they had decided that because Jake's progress had plateaued and his ventricles were so enlarged by the hydrocephalus, they didn't want to wait for his titanium plates to arrive so they were going to make acrylic plates themselves and do the surgery to fit them and a shunt next Thursday. This is a scary message at the best of times as they usually wait 6 - 12 months to do the cranioplasty, but Jake's will be fitted just 2 months after his surgery. The big cheese managed to spend 45 out of the 50 minutes we had with him sharing how difficult his job is, demonstrating that he hadn't read Jake's notes by talking about how Jake would probably never be able to do things he's already doing, talking about possible complications that there is no evidence of at all and generally scaring us silly. I was mute with shock and fear and if it wasn't for Sister in Law's composed questioning and the lovely co-ordinator's support after the meeting I think I might have been literally broken.

Having come down from the ceiling and really thought about the few useful and relevant things that he said, the conclusion is that this surgery is a good thing; until Jake can regulate the pressure in his skull he wont be awake enough to properly rehabilitate. The surgery is considered to be fairly minor (it takes about 1.5 hours and if Jake was now an outpatient he would only be kept in overnight and be home the next day) and all of his therapy team think it will help.

I know they said this experience would be like a rollercoaster, but I hadn't realised they meant AltonTower's Oblivion. 

So please think of our Jake on the 22nd and do whatever it is you do; hope, wish, pray, cross fingers, chant etc.

Neuro wars

Normally the clinical decisions that form a patient like Jake's care are made away from the family and we just get told what will happen next.

Unfortunately a very sweet Senior House Officer, who I'm sure meant well let slip earlier this week that there is a particularly significant decision being 'debated' at the moment; fairly vigorously.

Jake's progress has started to plateau and on Monday he had a CT scan to see if his ventricles were enlarged, indicating hydrocephalus which is essentially too much CSF fluid affecting the pressure around the brain. The general view is that he is not able to regulate this pressure and there is a good chance this is what is causing his high levels of fatigue and sleepiness. As he has had so much skull removed (more than would normally be removed we were told today) one cause for this could be that he simply can't regulate the pressure with so little skull. The challenge is that, although we have seen glimpses of Jake, he is far too sleepy for the rehab team to be able to successfully work with him.

You +1'd this publicly. Undo

So, in the red corner are the neuro surgical team who believe that we should bring forward his cranioplasty (replacing his skull with titanium mesh and plates) to January as Jake's ultimate outcome may be affected by his not being able to wake enough to rehabilitate.

In the blue corner is the neurorehabilitation consultant who thinks that the risk of infection is too high at the moment and we should wait to give Jake more time to heal.

Incredibly Jake's combination of injuries and current condition are unusual enough that there is no solid, research based evidence to support either theory. And so we have neuro wars.

As with all medical decisions it is a case of balancing risk with benefit and from a glass half full perspective it is wonderful that they are all so passionate about what they do and in making the right decision for Jake.

Sister in Law and I are both leaning towards going ahead with the cranioplasty, but then we're not exactly qualified, despite having learnt lots of complicated medical words!

We have asked to speak to those tussling with this decision on Monday and will hopefully have an answer one way or the other early next week.

One thing I can tell you is that I can see why they don't normally include the family in these decisions; the enormity of it is almost impossible to grasp and it only increases the unreserved respect I have for these extraordinary people.

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.

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.