Before I begin it is important to say that Jake's time at St Georges, or the Tooting Hilton as I like to call it, has been characterised by the ceaseless efforts of an extraordinary, dedicated and talented medical team.
Frankly though I am ready to say goodbye to them.
We have been at the Tooting Hilton now for three months and for the past two months the carrot of moving to Poole has been dangled tantalisingly just out of reach. Each time it is mentioned we hold our breath, praying that Jake will remain stable long enough for the therapists' assessments to be compiled, reports sent to the team in Poole and agreement for referral reached. So far we have only managed to get as far as the assessment stage before something goes wrong; hydrocephalus, sepsis, emergency surgery, seizures and now a rare bug that Jake is carrying for which there is no standard procedure (those that know Jake well will know how typical this is; no ordinary bug for Jake, oh no!). This means complicated negotiations between each hospitals' microbiology team...what fun. Amongst this drama though Jake does seem to be doing quite well and his team remain suspisiously positive.
During this time I have been staying at Sister in Law's London flat, which has been an absolute godsend as it means I have a comfortable base that is just 45 minutes from the hospital and has given me a sense of stability. However, it is not home. I want to go home. I want to have my own kitchen, bed, cat, sofa, office, garden, wardrobe, sky+, bathroom, washing line...I could go on. Home is also just 1.3 miles from Poole hospital which would mean I could walk down to see my Jake in less than 30 minutes. I dream of going home.
Today the carrot is so close I almost feel I could touch it; the issue with the bug seems close to being resolved and the fabulous brain injury co-ordinator tells me that she intends to send the reports today and give me the contact details of her opposite number in Poole so I can arrange to visit them ahead of Jake's transfer.
Experience has taught me not to count my carrots though, so I will try and keep a lid on the hope but would ask you to keep your fingers crossed for good news today.
Tuesday 24 January 2012
Monday 16 January 2012
Predicting the unpredictable
The last twelve weeks could reasonably be described as 'a period of unpredictable terror'.
Perversely it is now that we seem, based on the current evidence, to be moving past the terror that I feel completely overwhelmed. Don't get me wrong, there is still mild peril in the form of seizures, but we were warned this was likely and they are fiddling with different drug combinations to get this under control.
No, what is truly overwhelming is the future and the responsibility that lies ahead. This responsibility is like a ceaselessly shifting and expanding slippery thing that has a life and mind of its own... and teeth.
I have gone from starting a new life in Dorset full of possibilities with my husband and best friend, to being solely responsible for, well, everything; managing the finances without access to Jake's salary and with my salary reduced, getting back to work and being worth having back, finding and managing the right legal representation to maximise our chances of getting the best possible compensation package for Jake, making sure that everyone is kept informed of Jake's progress but managing this information so that I don't impose my own pessimism or optimism on it, trying to guess what Jake would want and working with the medical team to deliver this and, most frightening of all, trying to look ahead to what the next weeks, months and years might hold and attempting to create some sort of plan. I also need to try and remember not to lose myself under the weight of it all.
Of course I have help; family, friends, the medical team and colleagues continue to be extraordinary and this certainly makes a difference. But predicting the unpredictable is pretty tricky, however many people you have backing you up.
As of today, Jake continues to be stable and we continue to wait for the clues that will give us some idea of what lies ahead. Of course, all this could change tomorrow.
Perversely it is now that we seem, based on the current evidence, to be moving past the terror that I feel completely overwhelmed. Don't get me wrong, there is still mild peril in the form of seizures, but we were warned this was likely and they are fiddling with different drug combinations to get this under control.
No, what is truly overwhelming is the future and the responsibility that lies ahead. This responsibility is like a ceaselessly shifting and expanding slippery thing that has a life and mind of its own... and teeth.
I have gone from starting a new life in Dorset full of possibilities with my husband and best friend, to being solely responsible for, well, everything; managing the finances without access to Jake's salary and with my salary reduced, getting back to work and being worth having back, finding and managing the right legal representation to maximise our chances of getting the best possible compensation package for Jake, making sure that everyone is kept informed of Jake's progress but managing this information so that I don't impose my own pessimism or optimism on it, trying to guess what Jake would want and working with the medical team to deliver this and, most frightening of all, trying to look ahead to what the next weeks, months and years might hold and attempting to create some sort of plan. I also need to try and remember not to lose myself under the weight of it all.
Of course I have help; family, friends, the medical team and colleagues continue to be extraordinary and this certainly makes a difference. But predicting the unpredictable is pretty tricky, however many people you have backing you up.
As of today, Jake continues to be stable and we continue to wait for the clues that will give us some idea of what lies ahead. Of course, all this could change tomorrow.
Friday 6 January 2012
Be careful what you wish for
Today I have wonderful news; today is day 6 of Jake being more awake and alert than he has been since the accident. It seems as though the cranioplasty has done it's thing and the hydrocephalus is back under control.
Just to be clear, because I want to make sure I don't create a false picture, Jake is still in the very early stages of recovering from a very serious brain injury. At this stage he is mainly awake, but awake doesn't always mean present, he is sometimes smiling and nodding and is desperately tyring to speak. He is sort of silently mumbling and so far has managed to whisper 'yes' and 'hello' a couple of times. He has movement in both his hands, but his co-ordination fluctuates and he has very little strength. He can lift his head and shoulders briefly, but this exhausts him and he is not able to sit up. He is still being fed through a tube in his stomach and is double incontinent.
But he is awake, which is wonderful. This means that instead of just maintaining his condition the therapists can now start rehabilitating him.
A week ago if you'd told me that Jake would achieve 6 days awake I would have been whooping and cheering, because this is undoubtedly a very good thing. But reality bites and we are starting to understand what the medical team meant when they said that the rehabilitation stage would be the hardest.
You see, my Jake is sad. The downside to his being more awake is that he is becoming more aware of what is happening and its heartbreaking to watch. His frustration is palpable and we all feel so completely helpless.
As Dad reminded me last night, this awareness and sadness is just another stage of the journey that Jake needs to experience to rehabilitate and, as hard as it is, every recovering brain injury patient must make this journey.
So, hope goes up but I think we may be in for a bumpy ride folks.
Just to be clear, because I want to make sure I don't create a false picture, Jake is still in the very early stages of recovering from a very serious brain injury. At this stage he is mainly awake, but awake doesn't always mean present, he is sometimes smiling and nodding and is desperately tyring to speak. He is sort of silently mumbling and so far has managed to whisper 'yes' and 'hello' a couple of times. He has movement in both his hands, but his co-ordination fluctuates and he has very little strength. He can lift his head and shoulders briefly, but this exhausts him and he is not able to sit up. He is still being fed through a tube in his stomach and is double incontinent.
But he is awake, which is wonderful. This means that instead of just maintaining his condition the therapists can now start rehabilitating him.
A week ago if you'd told me that Jake would achieve 6 days awake I would have been whooping and cheering, because this is undoubtedly a very good thing. But reality bites and we are starting to understand what the medical team meant when they said that the rehabilitation stage would be the hardest.
You see, my Jake is sad. The downside to his being more awake is that he is becoming more aware of what is happening and its heartbreaking to watch. His frustration is palpable and we all feel so completely helpless.
As Dad reminded me last night, this awareness and sadness is just another stage of the journey that Jake needs to experience to rehabilitate and, as hard as it is, every recovering brain injury patient must make this journey.
So, hope goes up but I think we may be in for a bumpy ride folks.
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