Monthly Archive for May, 2009

Sunday 31st May

Published on 31 May 2009 in Progress. 22 Comments

A good day today.  Darryl slept well and was also resting very peacefully until about 11 am this morning when he had a visit from Leo and Colin from up north.  These are two of Darryl’s dog trialling friends, mentors and people Darryl has a lot of respect for and has learnt much from.  They were passing through on their way to the national dog trials, something Darryl would have no doubt travelled to as well.

Darryl had been learning to trial his dog Jimmy, and was doing very well, placing and even winning some novice competitions.  We were so pleased for Darryl that he was getting into the sport as we hoped it would be a focus away from the temptation of playing rugby.  True to form for Darryl though, he just did everything.

Leo and Colin chatted as Darryl started to rouse and then I opened his eyes (one at a time to prevent double vision) to see the visitors waiting for him.  He thumbs up was deliberate and meaningful as he saw two of his mentors standing at his bedside.  He seemed calm and was definitely taking it all in,  but the real surprise came when I noticed that the eyes that I had opened, when I let them go were remaining partially open.  It wasn’t a lot but definitely about a quarter open.  He was unable to open them further but he was able to keep them partially open.   

I had an idea and went to the house manager and explained the situation and asked if Leo could walk his dog around the back of the building to where Darryl’s room was so he could see the dog at the doorway to outside.  She was happy for this and so along came ‘Pet’, Leo’s dog and I positioned Darryl so he could see her as I opened his eyes.  Again he took it all in and you could almost read the expression in his eyes.  It was great.

After they left he settled back down and slept well through some of the afternoon and woke a little later and shared some time with his brother and sister.  He seems a lot more settled and sweats less as his levels of pain and comfort no doubt improve.  A day at a time he inches his way back and seems to have more restful sleep, which is critical to his healing.  The brain needs low stimulation, quiet and sleep, in large quantities.  So when he is getting that it  is something that gives us comfort as it is a feeling of complete helplessness when he is in discomfort and distress that we are unable to remedy.

The only stress of the day was blood clots coming up from his trachie.  This also happened yesterday but it seemed to have resolved until he once again coughed some largely old looking blood up late this afternoon.  It could be from the suctioning tubes or possibly from his arm being raked across his neck catching on it or pushing it further in.  As he has been on blood thinning medication a tear in the tissue could conceivably bleed more than usual leaving clots at the base of the trachie to be coughed out when he is agitated.  I hope it isn’t more than that.  His temperature is relatively stable so hopefully it is not an infection. 

On the whole though Darryl had one of his better days to date and the only reluctance I have in writing that, or even thinking it, is that the falls seem to so often follow the rises.  Lets hope that won’t be the case, he has been fighting so hard and tolerating so much he deserves a break and a few more ‘runs on the board’.

Keep it up Darryl, I couldn’t be more proud of the resolve you have, and continue to show.  Keep winning that test of you.

Dad

Saturday 30th May

Published on 30 May 2009 in Progress. 5 Comments

Five weeks.

Five weeks ago he had the world at his feet.

Five weeks later we celebrate he can touch his nose with his finger. 

Five weeks

It was a quiet day.  Little to report other than the strong grip Darryl gave my hand when I read him the poem I wrote last night.  Each day I share a moment of quiet motivation and encouragement and today it was that.  

It was a decisive grip and I could feel the determination in his clench. 

Five weeks.

Five weeks since a journey to a place far away.

Five weeks past on the long way back.

Five weeks.

Dad

Friday 29th May

Published on 30 May 2009 in Progress. 6 Comments

Darryl had a good day today and was responding really well to physio.  I think he needs to get moving and stretching as he is no doubt sick of lying in bed and equally tight because of it.  He was able to touch his eyebrows, nose and mouth and also answer a range of questions by the occupational therapists by either showing a thumbs down, or a thumbs up and then wiggling his thumb.

My brother Len and his wife came along to see Darryl today and Len noticed a lot of improvement from the last time he was down a week or so ago.  I guess being with him so much you don’t notice the total improvements, so it was good to get that feedback from Len.  It makes progress seem more real.

I spent some time today opening Darryl’s eyes and showing him pictures, the signed Northland jersey he has been sent and other momentoes.  He recognised his dog Jim and responded well to the photos.  Again this seems unbelievable given his state of unconciousness, but as I understand it he is slowly moving from what has technically been a coma to a state of very low consciousness.  In essence the damage to the brain stem which controls the level of consciousness, eye opening, pupil dilation amongst other things leaves him in this low consciousness state, which we hope he is slowly fighting his way out of as the trauma of the injury begins to reduce.

In some ways the confusion of this sort of brain injury makes it easier to deal with because it lends itself to large helpings of hope and possibility in the absence of certain answers.  A more prescriptive and defined prognosis could potentially be far more frightening given the devastation of the injury.  I have done a lot of reading and searching the net for examples of brain injury of this nature and it is a harrowing experience I’d compare to tip-toeing through a mine field with a pair of diving flippers on, dragging your catch bag behind you.  Something is going to blow up in your face!     

The progress is and will be slow, but progress is progress and that we are thankful for albeit the uncertainty is only matched by the emotional turmoil that ambushes all of us at random and without warning.  The strength of Darryl, his determination to achieve all he can is proving its worth in his survival and will do so in his recovery.

 Darryl, know this in your heart:

When all around are struggling, and chaos fills the air,

When all the tides are turning and the pressure is hard to bear

When most are falling to their knees and few will hold their feet

When the white flags are being hoisted and the masses are all but beat

It is then that strength must guide you and calm must be your friend 

It is then that you must swim strongest and to nothing you must bend

It is then that you must stand tallest and be most steady on your feet   

It is then you must fight hardest and never surrender to defeat  

And then when victory is yours to savour it will be so rich and true

For Darryl nothing in this world can compare to passing this test of you.

Keep strong and true Darryl.

Dad

Thursday 28th May

Published on 28 May 2009 in Progress. 9 Comments

The journey continues as does the waiting and hoping.  Darryl was a little more unsettled today so he had less physio in favour of rest.  When he did rest he looked heartbreakingly peaceful.  Such a contrast the utter chaos of emotion that surrounds him.

He gave me a thumbs up today when I asked him if he was felling better being at this facility and out of hospital.  Understandable given the large team all around him focused on his every rehab need I guess.  They are a truly special bunch.  Just what the ‘doctor ordered’ for such a special young man.

He is still storming and we have been working hard to try and ‘break’ the tone in his muscles and relax him by stretching his legs and torso, changing his positions and looking for any triggers that may set it off and trying to anticipate them.  Just when you think he is getting better in this regard, he sparks up and away he goes again.

This evening after stretching his legs and trying to settle him down I sat quietly beside him and held his hand.  I talked quietly with him and shared some father son advice and encouragement.  His breathing slowed and he seemed to be taking it all in.  It was hard to keep the strength in my voice as I spoke but it was important to do just that. His strength is mine and mine his, parallel state of consciousness or not.

Last night I caught a glimpse of Darryl’s oil skin jacket, which was more or less a second skin, he wore it so much.  Darryl’s boss had brought it down from the farm.  Just seeing the jacket brought a flood of emotions to the surface.  I reached out and touched it as if to touch the Darryl who once wore it.  The pain of such a simple emotional trigger was tangible.  

Darryl, you should be wearing that jacket.  You should be taking it off as you step into the house and head straight to the fridge.  You should be sneaking a few of Brenna’s treats from the cupboard and then blaming me.  You should be sitting on the couch munching on some home baking leaving a trail of crumbs.  You should be lazing in front of the TV falling asleep as you watch the rugby.  You should be you Darryl, you should just be you, NOT this.

I love you Darryl, but more so I believe in your strength, will and courage.  That is who YOU ARE and that is what will beat THIS!

Dad

Wednesday 27th May

Published on 27 May 2009 in Progress. 9 Comments

After an hour or so of typing a posting the internet went down and I lost all but the first line!  It probably is a fair indication of how I’ve been feeling since this afternoon anyway.

I am dog tired so I will just leave you with a short overview of the day.  He is settling in well and the staff are getting to know him and his new routine well.  That is very reassuring.

Every day he makes small steps but every day I am reminded of what has become of the life he so cherished.  It is so incredibly wrong and the sense of loss is immense.    

I hope that tomorrow brings a different reality.  I hope that tomorrow brings more of you back.

Keep true to the course Darryl.  Kites fly highest into the wind and you will rise high above this reality.   You will come back, to you, not THIS.

Dad

Tuesday 26th May

Published on 26 May 2009 in Progress. 11 Comments

I had a pretty stressful night last night (well more than the usual stomach turning I have become used to) as it was Darryl’s first night with a new team, in another foreign environment.  I was delighted and relieved to arrive this morning to see Darryl resting peacefully and that he had ’slept’ well.  

Right from day one the work has begun with Darryl.  He has a fantastic team of physio’s, occupational therapists, speech therapists, Doctors, nurses, nurse assistants, the list goes on.  We have been very impressed by the way they have quickly got in tune with Darryl and his care has moved to another level in terms of his entire rehabilitation needs.

It is not exactly common for people to move to a specialist brain injury clinics like this while still in a coma, but once the patient is medically sound it is the best place for them.  A place where the needs of rehabilitation, the body’s conditioning, joints mobility, muscles tightening and shortening are worked on while the stimulation and activities assist with getting the neurons to start firing and nerve pathway to reconnect.

I worked with Darryl and the speech therapists today to demonstrate to them his level of comprehension and it was thumbs up and down to a range of questions.  He nailed them all and in quick time.  Again hard to grasp given he is not ‘awake’ so to speak, but nonetheless he is making progress each day, in little ways.  There seems so much ahead which is why I like to think in terms of day size bites, but I took great heart from a quote on the wall of the unit Darryl is in, headed up ‘patience’.  The quote said:  “The man who removes a mountain begins by carrying away small stones” The bottom line is that he is still a long way from out of the woods but this is a good place to start clearing the trees!  (And  carrying away stones). 

I had a few moments today when talking to staff about some of the little milestones he has achieved and feeling so proud.  Every now and then I catch myself saying things which really indicate the devastation that has befallen one of life’s good guys, my son and friend to so many.  Those knives of reality cut deep and swiftly.  I guess much of it has to do with me getting my head around the new environment and the true scale of the task that lay ahead for all, physically, emotionally and mentally.  

The fear of what is to come, the unknowns and the question hanging over all of us about his state of consciousness is a constant leveller and cruel in its ever-present nature.  I battle myself with this all the time and I have come to accept that fear is a natural if not uneasy companion for all on this journey, not the least Darryl who I know in my heart is aware of the plight he’s in.  The reality is however that fear is something to be faced as overcoming fear is achieved by nothing less.  As I have mentioned before Darryl’s courage is matched only by his determination to succeed and in moving forward through this hell he gives us all strength to face the fear of the unknown ahead.  

As was once said by a great leader amongst men ”if you are going through hell – keep going”.  

Keep going Darryl,  we are stronger for your courage.

Dad

   

I

Monday 25th May

Published on 25 May 2009 in Progress. 16 Comments

Today brought another chapter in Darryl’s book of recovery; he moved to rehab.  Three weeks ago the registrar spoke to us about rehab and the fact that he could well go there while still in a coma so we have had time to get used to the idea, but you do feel a sense of anxiety moving from a hospital all the same.

The rehab is a specialist facility that deals with traumatic brain injury patients and has all the bells and whistles for rehabilitation.  Darryl is in the most intensive needs unit and there is a huge team of specialists that will begin work with him and hopefully ease him back to consciousness.

It was one of those ‘twilight zone’ moments on the way out there in the ambulance.  I asked Darryl if he knew where we were going and he gave a thumbs up, he also knew we were in an ambulance and he was able to communicate his level of comfort the whole way – while in a coma!! 

We got him settled in there and put up all his cards and pictures around the place and tried to brief up the staff on him , his progress to date and what makes Darryl tick.  There had been a pretty thorough handover from the hospital team so the transition wasn’t as scary as it might have been, albeit there is nothing about this journey that doesn’t scare me.

The rehab team will spend the next week assessing Darryl and getting to know what he can and can’t cope with and then develop a plan.   What that plan looks like, how long it will be and what will ultimately be the result is anyone’s guess.  Time will tell and we must all remember that this is a marathon not a sprint.   

The next few weeks will hopefully see the positive progress continue to grow and the distance between our parallel universes close.  There are times when I have to remind myself of the life that we left behind on this day four weeks ago, but I am also aware that life is about the journey not the destination and we are all defined by the way in which we deal with the twists and turns the journey inevitably brings.  

There is no easy way for Darryl, there are just degrees of difficult.  In so many ways I wish I could unravel this mess for him and put the pieces of this jigsaw back where they should be.  But life doesn’t work like that.  It goes only one way and that is forward.  The ‘what ifs’ only serve as reminders of choices not made and are salt in the wound for those who dwell on them.  Darryl is not that guy.  He has, and always will do what needs to be, to move forward.  Looking back to him is simply a way to measure how far he has come, not what he could have done differently.

So as time moves forward so will he, safe in the knowledge that  it is in tomorrow that the endless stream of possiblities really lay, regardless of the path that got him to today.

Keep strong Darryl

Dad

Sunday 24th May

Published on 24 May 2009 in Progress. 10 Comments

A cut ‘n paste day today.  Darryl is still sailing the stormy seas at night and seems to be resting quite well during the day.  I am fairly confident the storming relates to discomfort.  He is unable to move or communicate pain or discomfort so he starts tensing up and sweating in response.  There is not much known about storming, but I certainly notice a pattern with it over recent days.

When he is moved, washed or stretched during storming, more often than not it stops the sweating almost immediately and he relaxes and drifts into heavier sleep.  It could just be coincidence, but it’s a fairly frequent occurance if that is the case.  Either way it’s pretty distressing for all concerned.

Darryl seemed to feel that the Chiefs will win the Super 14 final, but he had picked both the Canes and the Crusaders to win the semi-finals so don’t go crazy at the TAB based on his picks.  Or maybe I was just getting his thumbs up mixed up.  I challenged Darryl to wake up by the final which he seemed up for (so to speak).       

It must be a  terrible state to be in for him.  He seems keenly aware of life all around him and tries like crazy to communicate with his thumbs and now his entire arms are moving as well, all while two shades of consciousness away.  He seems to be stirring, but the flip side is that he will be getting more and more frustrated while in his more awake states.

I have tried to imagine it (not that I really have to when I am so close to it) and how it would feel to be in a dark room with no idea where the door is and being tethered to the floor at almost every moving body part, somehow trying to fight your way to the door and out of the room, while all you can hear is others calling to you from the other side of the door you can’t see.  I don’t like to imagine that comparison too often!

Brenna’s take on reality was highlighted today when as we walked out of the ward in which the HDU is, she looked down the corridor to ward 82, critical care and turned to me all matter of fact and said “That’s the really bad place down there aye Dad?”  I enquired as to what she meant by that and she replied “It’s where you go when you are feeling really bad, because that’s where Darryl was when he was really bad, but now he’s feeling a bit better so he’s in the other place which is good”.

I can’t even bear to look at the doors of critical care as it induces an automated panic reponse and yet Brenna has processed the experience and information and is moving on.  I hope she is anyway.  So refreshing to reflect on the innocence and care-free spirit of childhood.  If only you could bottle those childhood coping mechanisms and store them up for adulthood.  I’d be downing my fair share now that’s for sure!

Come on Darryl, keep hunting for that door, searching through that fog and following the voices back to us.  Just keep going mate.

Mike

Saturday 23rd May

Published on 23 May 2009 in Progress. 9 Comments

28 days have passed since ‘D’ day.  Catherine and I talked about this briefly today sitting beside his bed.  It is hard to believe a month has passed and we have survived this torture let alone Darryl.  Someone once said to me that you should live each day as if it’s your last, because one day you will be right!  Makes sense I suppose.   No doubt at all that Darryl wrung each day dry and didn’t waste time wondering ‘if’.  Ironic given that all I can do is wonder ‘if’.

Darryl had a fairly good day today and was quite responsive when in his more awake states.  Two weeks ago we were overjoyed that Darryl was able to give a single squeeze of the hand on command.  Now he is able to touch his nose, lift and move his left arm and communicate quite clearly his wants and needs with his famed thumbs up.  Progress is being made.  I just wish he wasn’t still asleep while it was occuring. 

I know he has a lot of pain in his head and must be more frustrated  than anyone, but even through that he is working away wanting to come back.  Time is needed, I keep telling myself that.  I just wish I would listen!!

In the main I have become used to dealing with the ‘don’t knows’ which really hurts as I don’t want to get used to this and somehow make it normal.  But the reality is that you have to develop a fairly thick skin to weather the storm, let alone the storming Darryl has been doing.  I feel Darryl is clawing his way back and the brain may be slowly relinquishing  it’s iron grip on unconsciouness.   It is just not an instantaneous process where suddenly his eyes open and he is back to the land of the living.  He is having to fight for every inch, but that is what life is all about I suppose.  Anything worth having is worth working for.

Thank you all for being there for him and us and sharing some of the burden we bear.  We have no choice in the journey but it is one we are not travelling alone and for that we are grateful. 

It is a month since this event shattered what was our ‘normal’ life.  I hope in another month I can tell you all of a normal life that has become a celebration. 

Mike

Friday 22nd May

Published on 22 May 2009 in Progress. 11 Comments

Even in a coma Darryl was able to give a thumbs up for his pick of the the Hurricanes to beat the Chiefs.   That proves he is making headway in the fog, because he has always been a great supporter of the Canes and never the bell ringers from the ‘Tron’.  Just a shame that the Chiefs snuffed out yet another effort from the yellow and blacks.  Anyway I rang and told his nurse to pass the result on to him as promised.  Go figure, how the hell can all this happen when he’s in a coma!?!

Today he made a few more baby steps being able to touch his mouth, nose and eyebrows pretty much all of it on his own.  His more awake times, do indeed seem more ‘awake’ than they have been.  I find myself questioning how these steps can be made while he still remains so deeply asleep.  In many ways as the days march on like this I am beginning to fear that he is somehow trapped in a state of coma and there sometimes seems no rational way of coming to grips with his parallel existance in subconsciousness.  To be honest, it frightens me.  To be honest, everything about this frightens me.

One of the doctors said this evening that they would normally expect people to have woken up by now which made my legs go weak under me and immediately triggered a fear response.  I know she wasn’t meaning to cause that, but the concern in her voice was hard to ignore and reality is that when you are on a knife edge it is not hard to get ‘cut’. 

I quickly tried to defend Darryl’s comatose state in my own mind; his need for sleep and rest, his positive progress seeming to indicate he was becoming more alert and awake, the numerous other head injuries we have heard of that result in months of coma but eventual recovery.  It worked to some extent, but deep down I am just scared and want this nightmare to end and for my son to come back to the world he has so much to offer.

I am angry, tired, hurting and frustrated.  I keep telling myself it is a test, a test of patience and strength of character.  Well you know what, I’ve been tested enough and so has my family and you as friends.  This is just cruel and Darryl doesn’t deserve to be laying in a hospital having dribble sucked from his mouth.  I just feel so helpless and I hate it.  

Well now I’ve got that off my chest, I want you to know that regardless of what the ‘norm’ is or isn’t for head injury, Darryl will beat it.  He is not doing what is normal, because he isn’t normal, he’s exceptional.   

Darryl, it was once said by Winston Churchill that ” Courage is the first of human qualities because it is the quality that guarantees all the others.”  You are as courageous  a young man as I know and I look to your courage to find resolve in myself, to waken each day and dismiss the nausea of reality that pervades each morning, knowing that you will not give in.   You will never give in.

Mike