Thursday, 17 November 2011

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 ( 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.

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