A Living Miracle

This is a record of the discussion we had when we met with the Consultant (Dr B) on Thursday  9th August.  

Originally one of Dr B’s team came to speak with us, but we insisted we had come to speak to Dr B himself and we eventually got to see him. 

He started off by telling us that Dad was very unlucky to have suffered the stroke he had…and that people don’t usually survive.  He explained that they had expected Dad’s organs to fail and shut down based on the extent of the brain damage…but against all odds, Dad fought back, beating pneumonia along the way and his organs have remained strong.  Dr B checked Dad’s organ’s over and confirmed they were working well.  He said it is only because Dad was such an active and healthy man that he has been able to survive this. A Living Miracle.

So what caused the massive stroke?  Well the finger points directly to Dad’s irregular heartbeat.  Dad may have been feeling symptoms of a racing heart, or his heart skipping a beat over the last 2 to 3 years – but he could have dismissed them as nothing important and not worth a visit to the Doctor.  Lesson learnt.  An ECG scan would have picked up Dad’s irregular heartbeat and prevention methods could have been put in place.  This is why the Government are currently considering funding for all those aged over 50 to have regular ECG’s to help prevent the number of strokes that occur in the UK each year.

Without going in to too much detail, numerous small blood clots will have formed over the last 2 - 3 years resulting in several of them forming in to one big clot.  Because the clot was such a large one, it would have made it's way through two of the three arteries to Dad’s brain, starving the brain of oxygen and causing damage to both sides of Dad's brain when it exploded.  

Dr B explained that once the brain is damaged, it is dead.  The dead brain cells are replaced with skin and muscle and the brain has to then create new pathways to rewire itself to carry out activities.  Dr B was very pleased to report that Dad’s left part of his brain is recovering well and should improve further as the neurons find new pathways to connect.  Dad must be kept stimulated to encourage this.

We were told Dad is likely to have permanent disability and motor function (the ability to use and control muscles and movements) particularly in his left arm, but he saw no reason why Dad wouldn't be walking again in time.  The left side of Dad’s body has a high level of spasticity – although Dr B advised botox injections would help with the loosening of Dad’s muscles and should make physio easier.  He advised us that his colleague would be interested to see Dad and would carry out a series of scans and examinations to identify which muscles in Dad’s arm and leg would benefit from the injections.  He would be able to understand whether it is a nerve injury or muscle weakness as to why Dad can’t yet put pressure on his left foot.  There is hope that Dad will, in time, be able to have a level of mobility in his left leg to be able to take some steps.

It is important Dad does not neglect the left side of his body as Dr B said his right side is so strong.   Sitting in a wheelchair will assist in ensuring Dad uses both sides of his body.

Dr B advised us that Dad would benefit from being referred for intensive rehab therapy three times a week.  We updated him on our thoughts of the brain injury rehabilitation home; although he had not heard of the place – he said as long as Dad was getting regular intensive therapy this would benefit his recovery.  He made clear he had no involvement with the PCT process.

We were also advised that Dad should be off the PEG feed within four months and eating a normal diet.  I asked what…a normal diet…as in no thickener and pureed food? And the Doctor replied yes! How promising is that?!

We explained how Dad’s progress seemed to have gone backwards since coming out of hospital last month and the only thing that had changed was his medication.  Dr B was frustrated that NG had not sent over a list of Dad’s latest medication so that he could make adjustments.  We had specifically asked whether there was any documentation or info to take with us to hospital – but that's another story.  Dr B advised he would still make his assessment when the information had been received. (NB I phoned his secretary Friday to ensure the info had been faxed to her...I'm relieved to say - it had).

So how long did Dr B say we are talking for Dad’s recovery…well it’s no quick fix.  He advised Dad’s recovery would take approximately 3 – 4 years.  We always knew we were in this for the long haul – and we've said from the start we will be with Dad every step (literally) along the way supporting and encouraging as we have done over the last 13 weeks. 

That's a 'brief' summary of our meeting with the Consultant.  We felt very positive after talking with Dr B, it was good to finally have some answers as to why this happened and have an understanding of what we would be working towards for the future. But that positivity lasted all of 24 hours....because then Mum went to visit Dad at NG on Friday and Dr M asked to speak with her...

Dr M advised Mum that he didn't want to dash all of our hopes...but he didn't think it was realistic that Dad would be walking within 3-4 years...?!?!?  Talk about messing with our heads.      This knocked us back down for a short while, but if Dad is to get some mobility back in his left leg over the next 3 - 4 years then I, for one, will be proud. A few steps even...I'm not expecting an 18 hole round of golf - not just yet anyway ;-)  Look how Dad has surprised the professionals by getting this far and making the fantastic progress he has...I know he'll go on surprising people as he continues in his recovery. 

I should add here an update regarding the PCT assessment.  I received a call on Tuesday from the Nurse who presented our case to the panel, informing me that she had been asked to get further information from Dr M.  The panel want to know a) whether Dad will make any further progress and b) what is the risk of Dad suffering from further strokes.  I saw this as a positive - excellent that the panel hadn't said an immediate 'no'. But do the PCT want to know the answers to understand whether Dad's worth investing in, or are they of the mindset if he can't make any more progress he'll need long term funding??  I don't know what they are thinking....but I do know that if we are talking years and not months for Dad's recovery - then we are going to need some financial assistance.  I could go off on a personal rant here - but I won't.  I'm sure you all feel the same- when someone's been a law abiding citizen and paid their taxes all their life blah blah blah...but let's see what happens Tuesday when our case is reviewed with the additional information. We must stay positive.

And so staying on the positive vibe....I must thank each and every one of you for all your kind thoughts and positive prayers for Dad over the last few months.  He is a living miracle and I am pretty sure that Dad’s recovery to date has a lot to do with the love and support, encouragement and faith that family and friends have shown him during this time.  There has not been one single visiting hour in the last 13 weeks when Dad hasn’t had someone by his side speaking to him, stroking him and positively encouraging him to fight – so thank you to you all.

Dad’s recovery is only just beginning and as I’ve said before, we’re in it for the long haul….there will be good and bad times, emotional highs and lows and lots of challenges to face…but I just hope you’ll stay with us on this journey of getting my Dad - 'Alan Skett - The Legend'  back!

Love you Dad x

Just to add some more good news; I successfully passed with a credit the exam I took in May, a week after Dad had been admitted to hospital. It was the last exam to complete Level 5 (year 2) of my CIPS qualification.  

Dad wrote the following message in a card to me :-)