Friday, 30 December 2011

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 27th!).  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.

Saturday, 24 December 2011


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!

Monday, 12 December 2011

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.

Friday, 9 December 2011

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.

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.