In addition to no physiotherapy, Kevin has received no formal speech therapy, nor have Alison or any of Kevin’s carers/support workers received any guidance or resources from professionals in this respect, other than on an informal basis from one who is now working in a different area. Any work that has been done with Kevin has been a result of Alison and Kerry’s own research.
It is true that there is a dire shortage of speech therapists available via the State in the Bunbury area, but nor is there any funding to bring in a therapist privately. When Kevin was discharged from the rehab unit in Perth last January, his discharge notes stated that he had received ‘intensive physiotherapy and occupational therapy’ during his time there. In fact he only received 40–45 minutes’ physiotherapy for a maximum of 5 days per week, with only one or two assessment sessions for speech or occupational therapy over the couple of months or so that he was there. We asked in writing for the discharge record to be changed to reflect the true situation, but we didn’t even receive a reply to that letter, never mind actually get the record put straight.
Take a look now at this video, taken in November, and see Kevin reading. Imagine how well he might be doing if he were being given professional help in finding ways to spontaneously find and form his words and also to communicate in other ways. Once again, I remind you that the rehab consultant said that Kevin did not have the 'mental capacity' to walk or transfer - what does that mean, and has that statement also influenced the situation where Kevin is not given help in communicating - supposedly because he ‘does not have the mental capacity’ to do so??
Please do leave your comment! It is important that you do so in order to help us in the fight to get a fair deal for Kevin.
Title taken from the lyrics of 'Vincent' by Don McLean:
Starry, starry night
Paint your palette blue and grey
Look out on a summer's day
With eyes that know the darkness in my soul
Shadows on the hills
Sketch the trees and daffodils
Catch the breeze and the winter chills
In colours on the snowy linen land
Now I understand
What you tried to say to me
And how you suffered for your sanity
And how you tried to set them free
They would not listen
They did not know how
Perhaps they'll listen now
Read more!
Tuesday, 30 December 2008
Wednesday, 24 December 2008
Video of Kevin
So this is a new venture, posting some video footage of Kevin. Take a look and imagine trying to walk on your tip-toes like this... painful? difficult? So we ask why is he not receiving any treatment for his Achilles tendons? Is it because he doesn't have the "mental capacity" (this is a direct quote!) to walk or transfer or is it perhaps because no money is forthcoming from the State to pay for hospital treatment since there is no proof that a third party was involved in Kevin's accident? In your opinion, does this video demonstrate the former? If the latter, is that a good enough reason to deprive a man of the independence of which he may be capable, thereby impeding his quality of life, not to mention making the task of his carers more difficult? You decide!
Read more!
Sunday, 14 December 2008
November... and time ticks on
NEGATION
OSCILLATE
VACATION
EBULLIENT
METTLE
BUREAUCRACY
ELOQUENT
REHABILITATION
NEGATION (n) a negative statement, denial; the opposite or absence of something; a contradiction
The meaning of this word aptly describes our recent visit to the rehabilitation centre of Western Australia. There were no positives, no confirmations of the positive advances in recovery Kevin has made (these were documented and a DVD with footage of Kevin was sent to give an understanding of where Kevin is at now, but this was not even looked at by the staff member in charge of Kevin’s rehabilitation).
The absence of guidance and direction smacked us in the face once again. When asked ‘who was meant to be driving Kevin’s case’, we were bluntly told that ‘there was nothing to drive’! Apart form showing a distinct lack of sensitivity, is this true denial or just a plain lack of interest and a loss of passion for the job??
The contradiction is that other very experienced health professionals that we have sort privately are very optimistic that Kevin will walk again if the right support is available; sure this support might be at home, but let’s not just give up.
So we are on our own once again. Many thanks, however, to Kev’s Case Manager at the State Head Injury Unit (SHIU) in Perth, the physiotherapist at Epworth in Melbourne from whom we are seeking advice, our local physio, positive support from the private neurosurgeon and neurologist, and our great Support Workers.
The State’s contribution is the SHIU and the Support Workers, for whose education on the job I am responsible. So we fly by the seat of our pants and ‘Operation Tootsie’ is formulated; the plan is to have three daily sessions on Kev’s feet, using a mixture of physio therapy and Feldenkries therapy.
OSCILLATE (vi) to swing back and forward as a pendulum; to waver
Aptly describing Kevin’s progress, some days/weeks are full of excitement as we think we have finally picked up the momentum of some type of routine, then lo and behold everything does a 360 and leaves us spinning and trying to work out why and what next.
Just now we are dealing with another patch of extreme exhaustion and lots of sleeping; this may last a few days or even a week or more.
Kev was continent for a number of weeks, but we have returned to major difficulties.
I liken this part of Kev’s recovery to the incoming tide: the waves sweep in and out and yet the tide is still rising. We do not know how long the tide will take to come in or where his high tide will be.
VACATION (n) a period away from work, for travel, rest and recreation
We took Kevin on a ‘trial vacation’ for 2 nights up to Perth and stayed in a motel. He found this challenging; however, since he was out of his comfort zone he had to use a lot more language. On the first afternoon we thought we might have to abandon the trip, but with the arrival of Natahlia and Brenna and the support of Paula we managed the 2 nights and 3 days. Kev really didn’t do a lot as he really loves being in the car and for the last 6 weeks has found it difficult to leave this haven of security.
EBULLIENT (adj) exuberant, enthusiastic
An apt description of Kev’s interaction with friends, acquaintances and the general public during his outings in the ute. He waves to everyone and calls out a clear ‘Hello’ to all. He is thrilled when people respond with a return hello or a few words, giving him the opportunity to converse with his flash-card statements.
Kev is also ebullient now when it comes to standing in the shower; holding on to a high grab rail, with a rolled towel under his feet, he is able to have a good stretch and stand for just over 2 minutes at a time.
METTLE (n) courage, spirit
Mettle is certainly necessary to continue the journey. It is difficult at times to keep up the motivation, to continue the brave battle of organising and rehabilitating body and mind.
Kev’s latest display of this quality is use of the tilt table to assist in weight-bearing and stretching his Achilles tendons, to optimise the use of his legs and the eventual ability to walk.
BUREAUCRACY (n) a system of government where administration is organised in a hierarchy; the government collectively; excessive paperwork and red tape
The red tape definitely applies; nothing gets done without pushing up hill and there is still plenty to do regarding tying up the loose ends and then some.
It seems that everyone likes to refer to someone else, and after much time energy and money one has done a full circle and no-one takes the reins, yet if I try to do so it is frowned upon by the professionals because it is their job!! Perhaps this might be termed ‘professional jealousy’?
At the end of the day the squeaky wheel gets oiled first, but it takes an incredible amount of energy to squeak loud enough to be heard.
Head injury and the overwhelming destructive effects are not a priority for this government; baby bonuses and sports promotions are. Repetitive funding for cancer and child health are great but, hey, it is the people who need the greatest assistance with rehab who are ignored and thrown away. Those whose needs are greatest are given the least help; what justice is there in this? There is no credit for a profession if they can’t fix it to an extent that satisfies their particular criteria, and it seems any increase in an individual’s quality of life is just not worth the input if it doesn’t reach that certain level.
ELOQUENT (adj) speaking and writing, fluent and powerful
Kev’s progress in this regard may not be termed ‘eloquent’ by the general public, but it is music to our ears as he becomes more fluent with his flash cards and as his voice gathers power and a little pitch and tone.
I have spoken to one family whose loved one took 3 years to speak again, so good on you Kev, it’s only been 18 months and there is definite steady progress.
REHABILITATION (n) to put back in good condition; to restore to rights or privileges; (sick person etc.) to help to adjust to normal conditions after illness
As a result of Kevin’s resistance, formal rehab is not an option at this time; however, we did ask for assistance in a home programme and a review by the physiotherapist at Shenton Park Rehab Unit in Perth. We were after guidance, not looking to suck away their precious resources that I am well aware are used on people who are just as deserving as Kev and not nearly as advanced in their personal rehabilitation.
We are looking for guidance and planning, general goal-setting; someone to sit in the driver’s seat for this journey. I was shocked when told there was ‘nothing to drive’.
I was even more stunned when discussing Kev’s ability to walk again with the same ‘health professional’, that they said that they ‘would love to win Lotto, but that it also was highly improbable’!! Sorry, did I say ‘professional’?
To me, there is no comparison: Kev has the desire to walk and his body has the capability. To get his feet flat and then get help him to regain his balance and confidence will take time and effort, but is highly probable (and this has been inferred and even stated outright by other true professionals), whereas the chance of a good lotto win is probably equal to the chance of you or I being struck by lightning.
So, really, there is no comparison at all!
*****
So here we are in the richest state of Australia with no option on offer but to do all the rehab at home; our main resource is the State Head Injury Unit, after which everything all else is to be sourced and funded by ourselves.
I just wonder what is happening in the lives of some of the people who are responsible for not only the immediate well-being of their clients, but the domino effect upon all those who are directly and indirectly involved with their clients. It makes me wonder about the remuneration and fringe benefits received by those holding these positions – they are public servants, and it is we who pay their wages. I often feel that not only is there a huge lack of compassion, but there also appears to have been a hardening of their souls, such that they have lost the passion that must have originally driven them to the career in the first place.
Rehab should be constructive, not destructive (see again the definition above).
I come away feeling hopeless and intimidated, abandoned.
Click here to see more photos from November.
Read more!
OSCILLATE
VACATION
EBULLIENT
METTLE
BUREAUCRACY
ELOQUENT
REHABILITATION
NEGATION (n) a negative statement, denial; the opposite or absence of something; a contradiction
The meaning of this word aptly describes our recent visit to the rehabilitation centre of Western Australia. There were no positives, no confirmations of the positive advances in recovery Kevin has made (these were documented and a DVD with footage of Kevin was sent to give an understanding of where Kevin is at now, but this was not even looked at by the staff member in charge of Kevin’s rehabilitation).
The absence of guidance and direction smacked us in the face once again. When asked ‘who was meant to be driving Kevin’s case’, we were bluntly told that ‘there was nothing to drive’! Apart form showing a distinct lack of sensitivity, is this true denial or just a plain lack of interest and a loss of passion for the job??
The contradiction is that other very experienced health professionals that we have sort privately are very optimistic that Kevin will walk again if the right support is available; sure this support might be at home, but let’s not just give up.
So we are on our own once again. Many thanks, however, to Kev’s Case Manager at the State Head Injury Unit (SHIU) in Perth, the physiotherapist at Epworth in Melbourne from whom we are seeking advice, our local physio, positive support from the private neurosurgeon and neurologist, and our great Support Workers.
The State’s contribution is the SHIU and the Support Workers, for whose education on the job I am responsible. So we fly by the seat of our pants and ‘Operation Tootsie’ is formulated; the plan is to have three daily sessions on Kev’s feet, using a mixture of physio therapy and Feldenkries therapy.
OSCILLATE (vi) to swing back and forward as a pendulum; to waver
Aptly describing Kevin’s progress, some days/weeks are full of excitement as we think we have finally picked up the momentum of some type of routine, then lo and behold everything does a 360 and leaves us spinning and trying to work out why and what next.
Just now we are dealing with another patch of extreme exhaustion and lots of sleeping; this may last a few days or even a week or more.
Kev was continent for a number of weeks, but we have returned to major difficulties.
I liken this part of Kev’s recovery to the incoming tide: the waves sweep in and out and yet the tide is still rising. We do not know how long the tide will take to come in or where his high tide will be.
VACATION (n) a period away from work, for travel, rest and recreation
We took Kevin on a ‘trial vacation’ for 2 nights up to Perth and stayed in a motel. He found this challenging; however, since he was out of his comfort zone he had to use a lot more language. On the first afternoon we thought we might have to abandon the trip, but with the arrival of Natahlia and Brenna and the support of Paula we managed the 2 nights and 3 days. Kev really didn’t do a lot as he really loves being in the car and for the last 6 weeks has found it difficult to leave this haven of security.
EBULLIENT (adj) exuberant, enthusiastic
An apt description of Kev’s interaction with friends, acquaintances and the general public during his outings in the ute. He waves to everyone and calls out a clear ‘Hello’ to all. He is thrilled when people respond with a return hello or a few words, giving him the opportunity to converse with his flash-card statements.
Kev is also ebullient now when it comes to standing in the shower; holding on to a high grab rail, with a rolled towel under his feet, he is able to have a good stretch and stand for just over 2 minutes at a time.
METTLE (n) courage, spirit
Mettle is certainly necessary to continue the journey. It is difficult at times to keep up the motivation, to continue the brave battle of organising and rehabilitating body and mind.
Kev’s latest display of this quality is use of the tilt table to assist in weight-bearing and stretching his Achilles tendons, to optimise the use of his legs and the eventual ability to walk.
BUREAUCRACY (n) a system of government where administration is organised in a hierarchy; the government collectively; excessive paperwork and red tape
The red tape definitely applies; nothing gets done without pushing up hill and there is still plenty to do regarding tying up the loose ends and then some.
It seems that everyone likes to refer to someone else, and after much time energy and money one has done a full circle and no-one takes the reins, yet if I try to do so it is frowned upon by the professionals because it is their job!! Perhaps this might be termed ‘professional jealousy’?
At the end of the day the squeaky wheel gets oiled first, but it takes an incredible amount of energy to squeak loud enough to be heard.
Head injury and the overwhelming destructive effects are not a priority for this government; baby bonuses and sports promotions are. Repetitive funding for cancer and child health are great but, hey, it is the people who need the greatest assistance with rehab who are ignored and thrown away. Those whose needs are greatest are given the least help; what justice is there in this? There is no credit for a profession if they can’t fix it to an extent that satisfies their particular criteria, and it seems any increase in an individual’s quality of life is just not worth the input if it doesn’t reach that certain level.
ELOQUENT (adj) speaking and writing, fluent and powerful
Kev’s progress in this regard may not be termed ‘eloquent’ by the general public, but it is music to our ears as he becomes more fluent with his flash cards and as his voice gathers power and a little pitch and tone.
I have spoken to one family whose loved one took 3 years to speak again, so good on you Kev, it’s only been 18 months and there is definite steady progress.
REHABILITATION (n) to put back in good condition; to restore to rights or privileges; (sick person etc.) to help to adjust to normal conditions after illness
As a result of Kevin’s resistance, formal rehab is not an option at this time; however, we did ask for assistance in a home programme and a review by the physiotherapist at Shenton Park Rehab Unit in Perth. We were after guidance, not looking to suck away their precious resources that I am well aware are used on people who are just as deserving as Kev and not nearly as advanced in their personal rehabilitation.
We are looking for guidance and planning, general goal-setting; someone to sit in the driver’s seat for this journey. I was shocked when told there was ‘nothing to drive’.
I was even more stunned when discussing Kev’s ability to walk again with the same ‘health professional’, that they said that they ‘would love to win Lotto, but that it also was highly improbable’!! Sorry, did I say ‘professional’?
To me, there is no comparison: Kev has the desire to walk and his body has the capability. To get his feet flat and then get help him to regain his balance and confidence will take time and effort, but is highly probable (and this has been inferred and even stated outright by other true professionals), whereas the chance of a good lotto win is probably equal to the chance of you or I being struck by lightning.
So, really, there is no comparison at all!
*****
I just wonder what is happening in the lives of some of the people who are responsible for not only the immediate well-being of their clients, but the domino effect upon all those who are directly and indirectly involved with their clients. It makes me wonder about the remuneration and fringe benefits received by those holding these positions – they are public servants, and it is we who pay their wages. I often feel that not only is there a huge lack of compassion, but there also appears to have been a hardening of their souls, such that they have lost the passion that must have originally driven them to the career in the first place.
Rehab should be constructive, not destructive (see again the definition above).
I come away feeling hopeless and intimidated, abandoned.
Click here to see more photos from November.
Read more!
Friday, 5 December 2008
A voice rediscovered and other October triumphs
Kevin made some huge leaps and bounds this month. At times we’ve needed to use olanzapine to assist in calming him, but only if diversionary tactics failed and his behaviour was obviously beginning to escalate, with signs including increased rapid verbalisation, sweaty palms, and general agitation shown by his body language. He displayed post-traumatic amnesia (PTA)-type symptoms earlier in the month.
Along with these increased behavioural management issues came a new-found confidence which saw Kev going shopping three times and also displaying increased socialisation:
· playing puppets with Rubie
· an early morning breakfast at the girls’ horse camp
· sitting in Kendie’s house for dinner
· a meal at the waterfront fish and chips café
· and a few meals at the table.
A talking toy parrot has brought lots of laughs and been great for interaction; Kev is very fond of it and likes to show it to people and give them a bit of humour.
Following this agitation and new confidence came a very strange motorbike sound that evolved into a frog-like sound over a couple of days! Kev’s voice seemed to be regenerated like a motor attempting to kick in after a long period of not being used. This was hugely hilarious at first, and loud and consistent. However, it appeared to be a tic-like habit and soon became very upsetting for Kevin. This new behaviour on 6 October followed a ‘brainstorm’ the day beforehand. Thankfully, after about 8 days the frog evolved into a handsome prince who could read aloud!!!
SPEECH
Arrrgghh, yeah I did say ‘speech’? No… actually I YELLED it!!
Triumph
I purchased a wooden number puzzle thinking it would be a nice cognitive activity for Kev, plus the numbers 0–9 are brightly coloured and have a lovely smooth texture. He astounded us all by promptly fitting all the numbers into the correct spots and then matter-of-factly read the numbers 1–9 as I pointed to them!! Thinking he may be doing this by rote, I pointed to the numbers backwards and then at random, and he read each one correctly!! It was one of those surreal moments where if others had not been there to witness it, you would really doubt your recollection of events!!
We were all sooo excited with the number reading and the clear delivery of speech that it didn’t occur to me until the next day to attempt further vocalisation and recognition. So out came some flash cards: 40 right out of 50!!
So a voice is rediscovered and we have spring-boarded to the use of personalised flash cards for basic daily words, names and conversational statements. This has enabled far greater social interaction and has given everyone much excitement. A real wow factor!!
Thanks to Paula for making up the laminated cards, and also to Pete for thinking up some ideas for conversational statements. And also a huge mountain of appreciation to those who have made the time during Kev’s visits to interact with him by both listening and reading with him.
Trials
There is no speech pathologist, let alone funding for one, available to Kev in the Bunbury area.
Triumph
Louise, Kev’s Case Manager, has worked as a speech pathologist and is able to help over the phone with speech therapy needs.
The flash cards assist in stimulating spontaneous speech and enhance interaction and conversational qualities.
Triumphs
Examples of inconsistent spontaneous speech:
· ‘When we here’
· ‘Go!’ (when traffic lights are green)
· ‘Back’ (indicating to get into the back seat)
· ‘Where you go?’
· ‘Hello!’
· ‘Here’
· People’s names
· Mimicking, e.g. monkey, pig, blowing raspberries
· Reading number plates and road signs out loud
· ‘Come’ (with or without hand signals)
· ‘We wait here, you go’
· ‘OOOhhh’
· ‘Whoops’
· ‘Bye-bye’
· ‘See ya’
· Talking on the phone, ‘Hello’, ‘Where you?’, ‘Love you’, ‘Good’,
· ‘Toilet’
· ‘Water’
· ‘Pain’
· ‘Please’
· ‘Here Paula’
So slow and steady communication is beginning!
Kev’s voice is a monotone and robot-like, but apparently this is typical of someone with dysphasia. He has also started to tell the time on analogue and digital watches; he is wearing his watch again and checks the time independently, without prompts, for his own information.
ORAL INTAKE
Triumph
Kev continues on a steady and consistent diet and fluids.
Appetite increased ++ over sleepy period.
Trial
We are trying to modify his diet and increase exercise to prevent excess weight gain, which would slow his physical rehab.
AWAKE/ASLEEP TIMES
Kevin had another ‘blow-out’ on 14 October (full moon), followed by a very sleepy day. This was the beginning of the car/bed-bed/car phase, in which we remain!! Kevin is thus in the ‘office’ (the front seat of the ute) a lot, where he does puzzles, colours in, writes, reads flash cards out loud, receives visitors and dines out (he sits in the front seat of the car for dinner!!).
Triumph
Kev is awake more than he was and has been awake for up to 15 hours on the rare occasion.
Turmoil
Just when we thought we had it right, on 25 October Kev threw us a curly one and started sleeping excessively, for 16+ hours a day, being drowsy and difficult to rouse with no other obvious neuro signs between excessive sleep periods. After 1 week of this pattern we decided to get an ambulance and he underwent a full investigation at Bunbury Regional Hospital. Blood and urine tests, CT and chest X-ray were all clear, which was a relief, so it’s anyone’s guess whether he had a week’s ‘catch up and healing time’ or had some type of virus.
Who knows?? No one, at the end of the day – this is the nature of head injury.
SHOWERS, AND RETURN OF ?SKIN HYPERSENSITIVITY
Triumphs
Well, let’s focus on the ‘good’ days – showering Kev is a pleasure, seeing him enjoy the warm water, using the soap and flannel, washing his own face and hair, brushing his teeth, doing a partial shave, and generally doing 60–70% of his shower, finished off with assisting with towel drying and dressing with minimal assistance. On a really good day I hop in with him and he gives my back a good scrub. I am sure it is nice for him to be able to give in return. He was taking himself off to the loo at times, which showed greater control and awareness, has been great for his feelings of well-being, and makes the laundry chores infinitely less!
Trials
Then there are the other days, when showering is an absolute no-no, and it’s not even worth going there, as it leads to huge frustration and agitation and is obviously just right out of his comfort zone!! So let’s just forget it; a bed bath is a great alternative, complete with hair wash!! There was one 10-day stretch when showering was just not an option, and this coincided with the excessive sleep and lots of head scratching. So once again, a bit of guesswork:
a) feeling generally unwell and skin therefore hypersensitive or just too exhausted to go through the process?
b) healing process in the brain has led to increased and very necessary sleep, and perhaps the axonal diffusion has caused increased skin hypersensitivity and therefore the sensation of flowing water is intolerable?
c) increased depression leading to increased sleep and decreased daily activity?
Hindsight is a great and wonderful thing!!
PHYSIO
The reality is that there is no physio provided by the State for Kevin (unless Shenton Park organises something, which would mean staying in Perth rather than being at home), so unless family organise it he would be left with an unavoidably poor outcome.
Triumphs
· Ball-throwing is back in.
· Remains competent in wheeling and navigating.
· Foot massage and stretching of the Achilles tendons has increased with staff input.
· General dexterity continues to increase (e.g. can bend knees and place feet flat on bed while watching TV, crosses legs).
· Muscle wasting not an issue at all.
Trials
· With a period of being generally unwell, Kevin’s mobility decreases for several days.
· Still attempting to get assistance and review for the tightened Archilles tendons, which are preventing Kev putting his feet flat on the floor. The referral was sent in August 08 and emails have been sent in an attempt to activate a review and plan; a review was booked for late October but had to be cancelled because Kev was unwell and unable to travel. He will be seen next month at our request, rather than wait for the review to be conducted in February.
· Right ankle started to roll with walking, need help to know what is best to do to avoid damage.
· At my own initiative I have purchased splints – hope I have done the right thing, as I’m flying by the seat of my pants here!!
· Kev became highly distressed in hospital when we had been there for just over 6 hours and he climbed quickly and precisely over the rails (almost a pole vault!!). Well, they said he only had to wait till 5 pm, and when he saw it was 5.15 he was out of there!! So he has lots of ability, as long as we can channel it!
· Buddy walking has become a thing of the past; I think it may be because he is worried about hurting us.
For a range of photos of Kevin in action, together with some samples of his own photography, click on this link here.
Read more!
Along with these increased behavioural management issues came a new-found confidence which saw Kev going shopping three times and also displaying increased socialisation:
· playing puppets with Rubie
· an early morning breakfast at the girls’ horse camp
· sitting in Kendie’s house for dinner
· a meal at the waterfront fish and chips café
· and a few meals at the table.
A talking toy parrot has brought lots of laughs and been great for interaction; Kev is very fond of it and likes to show it to people and give them a bit of humour.
Following this agitation and new confidence came a very strange motorbike sound that evolved into a frog-like sound over a couple of days! Kev’s voice seemed to be regenerated like a motor attempting to kick in after a long period of not being used. This was hugely hilarious at first, and loud and consistent. However, it appeared to be a tic-like habit and soon became very upsetting for Kevin. This new behaviour on 6 October followed a ‘brainstorm’ the day beforehand. Thankfully, after about 8 days the frog evolved into a handsome prince who could read aloud!!!
SPEECH
Arrrgghh, yeah I did say ‘speech’? No… actually I YELLED it!!
Triumph
I purchased a wooden number puzzle thinking it would be a nice cognitive activity for Kev, plus the numbers 0–9 are brightly coloured and have a lovely smooth texture. He astounded us all by promptly fitting all the numbers into the correct spots and then matter-of-factly read the numbers 1–9 as I pointed to them!! Thinking he may be doing this by rote, I pointed to the numbers backwards and then at random, and he read each one correctly!! It was one of those surreal moments where if others had not been there to witness it, you would really doubt your recollection of events!!
We were all sooo excited with the number reading and the clear delivery of speech that it didn’t occur to me until the next day to attempt further vocalisation and recognition. So out came some flash cards: 40 right out of 50!!
So a voice is rediscovered and we have spring-boarded to the use of personalised flash cards for basic daily words, names and conversational statements. This has enabled far greater social interaction and has given everyone much excitement. A real wow factor!!
Thanks to Paula for making up the laminated cards, and also to Pete for thinking up some ideas for conversational statements. And also a huge mountain of appreciation to those who have made the time during Kev’s visits to interact with him by both listening and reading with him.
Trials
There is no speech pathologist, let alone funding for one, available to Kev in the Bunbury area.
Triumph
Louise, Kev’s Case Manager, has worked as a speech pathologist and is able to help over the phone with speech therapy needs.
The flash cards assist in stimulating spontaneous speech and enhance interaction and conversational qualities.
Triumphs
Examples of inconsistent spontaneous speech:
· ‘When we here’
· ‘Go!’ (when traffic lights are green)
· ‘Back’ (indicating to get into the back seat)
· ‘Where you go?’
· ‘Hello!’
· ‘Here’
· People’s names
· Mimicking, e.g. monkey, pig, blowing raspberries
· Reading number plates and road signs out loud
· ‘Come’ (with or without hand signals)
· ‘We wait here, you go’
· ‘OOOhhh’
· ‘Whoops’
· ‘Bye-bye’
· ‘See ya’
· Talking on the phone, ‘Hello’, ‘Where you?’, ‘Love you’, ‘Good’,
· ‘Toilet’
· ‘Water’
· ‘Pain’
· ‘Please’
· ‘Here Paula’
So slow and steady communication is beginning!
Kev’s voice is a monotone and robot-like, but apparently this is typical of someone with dysphasia. He has also started to tell the time on analogue and digital watches; he is wearing his watch again and checks the time independently, without prompts, for his own information.
ORAL INTAKE
Triumph
Kev continues on a steady and consistent diet and fluids.
Appetite increased ++ over sleepy period.
Trial
We are trying to modify his diet and increase exercise to prevent excess weight gain, which would slow his physical rehab.
AWAKE/ASLEEP TIMES
Kevin had another ‘blow-out’ on 14 October (full moon), followed by a very sleepy day. This was the beginning of the car/bed-bed/car phase, in which we remain!! Kevin is thus in the ‘office’ (the front seat of the ute) a lot, where he does puzzles, colours in, writes, reads flash cards out loud, receives visitors and dines out (he sits in the front seat of the car for dinner!!).
Triumph
Kev is awake more than he was and has been awake for up to 15 hours on the rare occasion.
Turmoil
Just when we thought we had it right, on 25 October Kev threw us a curly one and started sleeping excessively, for 16+ hours a day, being drowsy and difficult to rouse with no other obvious neuro signs between excessive sleep periods. After 1 week of this pattern we decided to get an ambulance and he underwent a full investigation at Bunbury Regional Hospital. Blood and urine tests, CT and chest X-ray were all clear, which was a relief, so it’s anyone’s guess whether he had a week’s ‘catch up and healing time’ or had some type of virus.
Who knows?? No one, at the end of the day – this is the nature of head injury.
SHOWERS, AND RETURN OF ?SKIN HYPERSENSITIVITY
Triumphs
Well, let’s focus on the ‘good’ days – showering Kev is a pleasure, seeing him enjoy the warm water, using the soap and flannel, washing his own face and hair, brushing his teeth, doing a partial shave, and generally doing 60–70% of his shower, finished off with assisting with towel drying and dressing with minimal assistance. On a really good day I hop in with him and he gives my back a good scrub. I am sure it is nice for him to be able to give in return. He was taking himself off to the loo at times, which showed greater control and awareness, has been great for his feelings of well-being, and makes the laundry chores infinitely less!
Trials
Then there are the other days, when showering is an absolute no-no, and it’s not even worth going there, as it leads to huge frustration and agitation and is obviously just right out of his comfort zone!! So let’s just forget it; a bed bath is a great alternative, complete with hair wash!! There was one 10-day stretch when showering was just not an option, and this coincided with the excessive sleep and lots of head scratching. So once again, a bit of guesswork:
a) feeling generally unwell and skin therefore hypersensitive or just too exhausted to go through the process?
b) healing process in the brain has led to increased and very necessary sleep, and perhaps the axonal diffusion has caused increased skin hypersensitivity and therefore the sensation of flowing water is intolerable?
c) increased depression leading to increased sleep and decreased daily activity?
Hindsight is a great and wonderful thing!!
PHYSIO
The reality is that there is no physio provided by the State for Kevin (unless Shenton Park organises something, which would mean staying in Perth rather than being at home), so unless family organise it he would be left with an unavoidably poor outcome.
Triumphs
· Ball-throwing is back in.
· Remains competent in wheeling and navigating.
· Foot massage and stretching of the Achilles tendons has increased with staff input.
· General dexterity continues to increase (e.g. can bend knees and place feet flat on bed while watching TV, crosses legs).
· Muscle wasting not an issue at all.
Trials
· With a period of being generally unwell, Kevin’s mobility decreases for several days.
· Still attempting to get assistance and review for the tightened Archilles tendons, which are preventing Kev putting his feet flat on the floor. The referral was sent in August 08 and emails have been sent in an attempt to activate a review and plan; a review was booked for late October but had to be cancelled because Kev was unwell and unable to travel. He will be seen next month at our request, rather than wait for the review to be conducted in February.
· Right ankle started to roll with walking, need help to know what is best to do to avoid damage.
· At my own initiative I have purchased splints – hope I have done the right thing, as I’m flying by the seat of my pants here!!
· Kev became highly distressed in hospital when we had been there for just over 6 hours and he climbed quickly and precisely over the rails (almost a pole vault!!). Well, they said he only had to wait till 5 pm, and when he saw it was 5.15 he was out of there!! So he has lots of ability, as long as we can channel it!
· Buddy walking has become a thing of the past; I think it may be because he is worried about hurting us.
For a range of photos of Kevin in action, together with some samples of his own photography, click on this link here.
Read more!
Saturday, 27 September 2008
The a,b,c's of Kev's July, August, September 2008
So much for a monthly update for you all!!
The last 3 months have been non-stop, with plans and goals shifting daily like the tide, a smorgasbord of emotions, highs and lows, tears and laughter, hope and courage. Learning to latch on to the positives and the people who offer encouragement, hope and support; leaving behind negativity and accepting that energy is best spent on the positives and recognising that focusing on the negatives is a waste of valuable inner resources that are needed for the continuing long stretch ahead.
Mixed with all of this was the not-small matter of yet another house shift. This was a big one as the whole of the respite centre had to be emptied, and with this came closure on memories of what had once been our family home and the reality of dreams that did and did not come to fruition. This was helped along by the timing of the much-anticipated visit of Kerry, Paul, Corin and Jude with all their love and practical support – not to forget the ‘Over Forties Night Club’! We have also recently enjoyed the visit of our old (1970s) friends the McGregor Clan!!
So here are the a,b,c’s of the last few weeks…
ANXIETY Kevin was admitted to Bunbury Regional Hospital for increased anxiety (not unlike post-traumatic stress syndrome)
and major depression. He had
been showing typical signs of withdrawal – increased sadness, lack of appetite and a body temp that was consistently low. Unfortunately, the high level of agitation was accompanied by Kev’s only defence of lashing out; this seems to have decreased dramatically with action put in place by professionals.
The medical staff at BRH were sympathetic and supportive, and we were delighted at the way they treated Kev as a valued individual. He was admitted on 21 July, only a few days after Kerry and co. arrived, and stayed there for 3½ weeks.
BONE RESORPTION AND BRAHMI The left-hand side of Kevin’s skull, which was replaced last September, is being resorbed and
needs to be replaced with a titanium plate; we hope that the left cranioplasty will be done at the same time. We have an appointment in Perth for an initial consult with a neurosurgeon on 9 October.
Brahmi is an Indian herb that we get from Fitchs Pharmacy in Perth and is well known for its brain-healing properties. Kev started on it in late June.
CYSTOSCOPY, CUDDLES AND CONFIDENCE Kevin finally underwent cystoscopy on 10 September following recurrent UTIs and haematuria. Two small bladder stones were removed and the neck of the bladder widened. A bladder washout was performed after surgery. He is now on 6 months’ antibiotics and for due for review on 5 December.
Over the weeks, as his depression has lightened, the pain and discomfort from his bladder have been tended to and the “brain storms” have done whatever they do, his demeanour has changed.
He’s done a three-sixty from being withdrawn, pushing us away and not wanting company, to finding delight in having visitors and spontaneously cuddling family and friends. Alongside this new-found confidence, the anxiety of being in public places has reduced dramatically (though we are still very sensitive to Kev’s needs by not taking him into an excessively noisy or over-stimulating environment). Walks are back in vogue, and he even conquered eating in an outdoor restaurant today (28 September)!
So, as I have always said, “Hooray for Hug Power.”
DONNYBROOK HOSPITAL Kevin spent 6 days there following his stay in BRH, as I was suffering severely with a stomach bug and was unable to care for him. Donnybrook was a great experience for Kevin, who was able to enjoy the bush walks around the hospital and the flexibility offered by a small country hospital, even to the extent of the staff taking Kev for a Sunday drive!! Many thanks to Carol, Kev’s sister who lives in Donnybrook and visited twice daily with his Power Smoothies. I know how much Kev loves them, so a big ‘thank you!!’
EXPLOSIVE EPISODES In the last 2 weeks Kevin has had two strange episodes. The first was in hospital on 8 September, when he became highly agitated, lashing out and YELLING. It was like a huge release of grief and anger. It was really unpleasant for all involved and of course very distressing for Kevin. The agitation returned the next morning, medication was given and at first we thought his subsequent
behaviour was a side effect. He was suddenly smiling, compliant and trying to form words; this lasted for 13 hours, during which he made appropriate statements such as
“nice”, “blue sky”, “go pee”, “you get drink now”, “quick, quick”, “Where’s Dad?” – approx 50 words that day. It was as if he had returned from holiday and was so happy to see everyone again, the clouds had cleared and he could see the real world once again. He initiated humour, winking at me and then getting a reaction from others. The best part was the delighted chuckling.
The second episode (without the initial explosion!) was on 17 September, with heightened awareness, a prolonged wake period of 15.5 hours, and a huge amount of verbalisation and interaction. During this amazing episode (which unfortunately started at 5:30 pm and ran throughout the night), Kevin wanted to know where and when his accident had been and how old he was. A lot of this was communicated by way of single words and gestures. He also counted and did lots of other amazing stuff!!
· He remembered the number for the combination lock, which of course he hadn’t used for 15 months, since before the TBI.
· When asked who Rubie was, he answered “Daughter”. I replied, “Granddaughter?” He replied, “Yes”.
· He also spoke to Kendie on the phone, wanting to know where she was and to come and see him, and told her “Love you”.
During this episode of heightened speech and communication, the left pupil was enlarged and sluggish to light stimuli.
Jean and Sharon were able to witness this wonderful transformation, but later in the morning we ended up at the hospital as Kevin became highly distressed and insistent upon returning to our old home. IM sedatives were used to calm him. After a night in hospital and the provision of some “emergency drugs”, we returned home and had a delightful weekend with Kevin at a level of happiness and calmness that we had not seen in many months, along with increased verbalisation and meaningful interaction. It is almost as if there has been a “brain storm” and some rewiring has taken place.
With this latest admission to hospital, the paramedics, police (standard precaution) and hospital staff were fantastic with their gentle and reassuring approach. I found a discussion with a neuropsychiatrist at BRH particularly reassuring.
FOXTEL Kevin pointed at an ad for Foxtel (cable TV) several weeks ago, saying “Yes, yes”. So, much to his delight, we now have Foxtel connected, offering some stimulation and aiding memory recall; he’s been watching the old sci-fi pics and a few Golden Oldies.
GASTRONOMIC DELIGHTS Since his “brain
storms”, Kev’s sense of taste appears to have returned. He’s loving home-cooked meals again (sorry Macca’s, you miss out), enjoying curries, stroganoff, marmalade, fruit, vegies, carrot cake and juices. I plan on giving him a few cookbooks to choose what he would like to eat. Any fave recipes would be gratefully received, so I can cook a meal for Kev, from YOU!!
HEAD ITCHING AND HIGH HEELS Kev’s head gets incredibly itchy along the scar lines, and this appears to have increased with the “brain storms” or the lead-up to one – watch this space for confirmation. And NO, it’s not nits or dandruff!!
It was suggested that we use ladies’ high heels (wedge type) to support Kev’s feet when walking – very successful and I think the trade off between drag queen look and walking stability is well worth it!
INDICATE Kevin is now able to
indicate consistently and precisely his needs and wants and dislikes to an even higher level through verbalisation, gestures and writing and drawing. The writing and drawing is done in “window periods of opportunity”.
JUST TREADING WATER Lots of days and hours of this. For those of you who have seen Ground Hog Day, we are the crowd in anticipation and Kev is the Ground Hog – he comes out when he is ready and there is NO pushing him. Mind you, the Ground Hog is very popular, cute and well worth the wait!! So we will keep treading water as his brain continues to heal.
KILOS AND KINDNESS Kev is maintaining his weight around the 75kg mark, so well done Kev!
Kindness has been abundant, with a visit and ongoing phone support from the France family, a pressie from Dad and Margaret, a card and video from Joy, phone calls from Mum and Nicole, visits from Graham and Janet, Jean (and your ongoing supply of continence products for Kev is such a HUGE help), Sharon (the great body pillow and writing gear), Pete (who was finally rewarded with some great smiles and interaction last Saturday with Kev), Tony and Linda (thanks for the yummy meals), Tyron, David and Alex and everyone else who has popped into both the hospital and home.
At times it is very hard to faithfully keep on visiting when the usual sleepy Kev is unresponsive or stares uncommunicatively; this is not personal, but perhaps he is still in the twilight of the coma much of the time, or perhaps he is just putting the pieces of the jumbled puzzle together, much as a baby would when learning about the world. All visits do mean something as Tony and Linda found out. Kev did not know them before the TBI but have taken time to visit on many occasions; at the time of Kevin’s last “brain storm” he looked straight at Linda and said “I saw you” (he had seen her at the hospital).
Also, much gratitude for the kindness shown by all who helped with The Garage Sale, lifting, shifting and cleaning. Phew, we made it! To mention a few: Neville and Ethel, Dee, Lynette, Lynne, John and Leanne, Aidan, Janet and Graham, Ian, Anne and family, and everyone else who helped – I’m sorry, I’m not too good at remembering names, especially with everything that goes on every day! And I know Kevin in particular will be so grateful for the huge help given by Luke and Ryan in setting up the electrical wiring for the swim spa, which we hope will benefit Kevin enormously.
And of course thanks for the welcome, support and understanding of Albert and Sharon, John and
Irene, Louis and Mari-Anne, and Janet and Graham. In addition, I want to say a special “thank you” to a number of people who either met Kevin briefly when he was in the UK in 2000 or have never met him at all but know of him through Kerry and Paul and have given Kevin continence aids and therapy sessions. So heartfelt thanks to Keith and Sylvia (Manchester), Rosemary and Tony (Chester), Zorica (Leeds), and Lori and Paul (Fort St John, Canada). Your support goes such a long way!
LAUGHTER is definitely the best medicine, which is why it is so delightful to hear the occasional chuckle from Kev. It’s also
great for the rest of us, as I don’t think any of us would survive without seeing the funny side of things at least occasionally.
MEDICATION Kev is on a slightly raised dose of Keppra (an antiepileptic drug). He has gone back up to 750mg, from 500mg. This has stopped his leg twitches and he seems to be having longer periods of wake times. He is also taking Efexor (venlafaxine) for anxiety and depression – a great help. Pressin has been introduced for a mildly enlarged prostate. Plus he has as-required medications that are calmative when he has over-heightened behavioural activity.
NERVE-RACKING All the highs and lows and ongoing issues that need sorting are not only time-consuming, but take their toll, so out with the B vitamins!
OLFACTORY SYSTEM Seems to have kicked in big time with Kev’s “brain storms”; he now loves to sniff aftershave, fresh linen, liniment, perfume and food!
PEG The feeding tube, aka Jake (diddle-iddle-iddle-um, with his extra leg…), was removed late June, by default! There were some thoughts of replacing it, but we rode it out and now Jake is no more and Kev is maintaining a great diet of food and fluids.
QUENCHING Kev’s need for fluids is no longer the drama it was. He consistently drinks 1.5–2.5 L of fluid per day. He has not required thickened fluids at all, as is often the case for people learning to drink again.
RIGHT-SIDED WEAKNESS continues to improve dramatically, with Kevin using predominantly his right hand for tasks such as eating and drinking. Verbal prompts are still needed at times to encourage the use of his right hand with dressing. He’s able to lift his right foot independently while walking. Walking with either the “buddy” system or with the gutter frame has its strong and weak days.
SPA AND SMILES Thanks to Luke and Ryan’s great work, the swim spa
is up and running and Kev has been in it 4 times now, including twice yesterday!! He is floating with assistance, has put his head under the water voluntarily and seems fairly confident. He also showed great joy yesterday holding Rubie in the water, enjoying both smiles and
giggles. What a delightful scene! How far along the journey have we come since this time last year!
TELEPHONE AND THERAPISTS Kev has had some great telephone conversations lately, with clear verbalisations at times of “hello”, “yes”, “OK”, “See you”, “Bye-bye”, “Where?” (Kevin likes to know where people are, as he tries to piece his world
back together) and even a “Love you”. So let YOUR fingers do the walking, even though you may not get a lot of feedback from Kev, YOUR phone call makes a huge difference to his will power and feelings of worthiness. Just chat to him as you would have done before his injuries.
I want to mention all the wonderful therapists who have been part of Kevin’s journey; no doubt it would have been a very different outcome at this stage without you all!! Our homeopath, Marg; osteopath David in Perth; Chinese acupuncturist Gordon in Perth; Fitchs Pharmacy, Perth; acupuncturists Pete and Megan in Bunbury; cranial osteopath Craig in Bunbury; Annette; and the latest additions to the complementary healers, physio and Feldenkreis practitioner Rae and chiropractor David. The collective wealth of information, guidance, reassurance and wisdom that you all have shared and the time that you have given us when required, have put wind in our sails to help us to find the way (impatiently in my case) through the calm and sleepy seas as well as the turbulence and storms; the journey will be long, and your ongoing support is valued more than one could ever express.
UTILISING WINDOWS OF OPPORTUNITY Due to the inconsistency of “routine” (not for lack of trying!), each day is varied. Windows of
opportunity are found to extend Kev’s rehabilitation. To utilise these to the max, one needs to be pretty creative, maybe talking about the colour of cars, getting Kev to give directions while driving, visiting when the mood takes him, watching Foxtel in the wee hours, chatting on the phone. It’s all about seizing the opportunity to share and interact. Most of all, utilising every opportunity to help Kevin feel valued, wanted and loved with dignity, respect and his individuality intact.
VERBALISING AND VIDEOS Well, can you believe it?? The “brain storms” of last week seem to have unleashed meaningful, comprehensive (and, yes limited – but hey, these things take time) speech, e.g. when Natahlia was “sneakily” taking a video of Kev with her mobile phone last night, he
cracked a smile and a chuckle, gestured with his hands and said “Video”. On both episodes of storms, he has spoken consistently for a period of hours, and moved up a notch or two with yet more constant verbalising.
We have taken LOTS of video footage over the months, and are hoping to find a way to load it so it can be accessed from this site, so WATCH this space.
WELCOMING WANDERERS AND WALKING Kev was (as we all were) overjoyed to have Marcus and Renae safely home from their
travels and was delighted with some yummy chocolate from Switzerland and delicious smelling men’s perfume – great timing as his sniffer is back in good working order.
Kev amazed me one day by crawling into the garage, spotting his walking frame and standing up at it, then using the
brakes appropriately as he independently walked 100 m, with one cheering, anxious wife following!! The Achilles tendons remain tight and we work on this daily, so tiptoeing is de rigueur at the moment. The consultant at Bunbury Regional Hospital is confident that this is the start of things to come! GO KEV.
X-RAY Due to Kerry’s great and persuasive negotiation skills, Kev’s back was X-rayed in A&E, revealing several vertebrae in the upper half of his back with highly compressed discs, ‘bone on bone’; it is possible that Kevin is suffering some degree of pain from this.
YOU’VE nearly heard all the news (so far) from us; we’d love to hear news from you, so please drop us a quick note – just saying “Hi” would be great. Even better would be some thoughts, comments or suggestions.
YESTERDAY was one of the best days Kev has had, if not the best. He was awake early, went into town for a drive between 9 and 11:30, stayed in the car with Paula while I did some errands and also ate yummy carrot cake and drink. He slept for 3 hours after returning home and then had a lovely visit from Rubie and Kendie – he really fussed over Rubie! Then a great swim in the spa, returned to bed for a short while, went for a drive, came home and requested another spa (went next to spa and
undressed). Back to bed, watched TV, spoke to Kerry on the phone, and when Nat and Bren came home he had a fantastic time with them laughing and joking. He was also very affectionate with them, pulling them to his chest, hugging them and stroking their hair. Slept well overnight. Exhasted today, and so he is...
…ZZZZZZZZZZZZZZZZZZ ZZZZzzzzz zzzzzzzzzzz Kev still does plenty of this, some days up to 22 hours if he is unwell or exhausted.
Read more!
The last 3 months have been non-stop, with plans and goals shifting daily like the tide, a smorgasbord of emotions, highs and lows, tears and laughter, hope and courage. Learning to latch on to the positives and the people who offer encouragement, hope and support; leaving behind negativity and accepting that energy is best spent on the positives and recognising that focusing on the negatives is a waste of valuable inner resources that are needed for the continuing long stretch ahead.
Mixed with all of this was the not-small matter of yet another house shift. This was a big one as the whole of the respite centre had to be emptied, and with this came closure on memories of what had once been our family home and the reality of dreams that did and did not come to fruition. This was helped along by the timing of the much-anticipated visit of Kerry, Paul, Corin and Jude with all their love and practical support – not to forget the ‘Over Forties Night Club’! We have also recently enjoyed the visit of our old (1970s) friends the McGregor Clan!!
So here are the a,b,c’s of the last few weeks…
ANXIETY Kevin was admitted to Bunbury Regional Hospital for increased anxiety (not unlike post-traumatic stress syndrome)
and major depression. He had
been showing typical signs of withdrawal – increased sadness, lack of appetite and a body temp that was consistently low. Unfortunately, the high level of agitation was accompanied by Kev’s only defence of lashing out; this seems to have decreased dramatically with action put in place by professionals.
The medical staff at BRH were sympathetic and supportive, and we were delighted at the way they treated Kev as a valued individual. He was admitted on 21 July, only a few days after Kerry and co. arrived, and stayed there for 3½ weeks.BONE RESORPTION AND BRAHMI The left-hand side of Kevin’s skull, which was replaced last September, is being resorbed and
needs to be replaced with a titanium plate; we hope that the left cranioplasty will be done at the same time. We have an appointment in Perth for an initial consult with a neurosurgeon on 9 October.
Brahmi is an Indian herb that we get from Fitchs Pharmacy in Perth and is well known for its brain-healing properties. Kev started on it in late June.
CYSTOSCOPY, CUDDLES AND CONFIDENCE Kevin finally underwent cystoscopy on 10 September following recurrent UTIs and haematuria. Two small bladder stones were removed and the neck of the bladder widened. A bladder washout was performed after surgery. He is now on 6 months’ antibiotics and for due for review on 5 December.
Over the weeks, as his depression has lightened, the pain and discomfort from his bladder have been tended to and the “brain storms” have done whatever they do, his demeanour has changed.
He’s done a three-sixty from being withdrawn, pushing us away and not wanting company, to finding delight in having visitors and spontaneously cuddling family and friends. Alongside this new-found confidence, the anxiety of being in public places has reduced dramatically (though we are still very sensitive to Kev’s needs by not taking him into an excessively noisy or over-stimulating environment). Walks are back in vogue, and he even conquered eating in an outdoor restaurant today (28 September)!
So, as I have always said, “Hooray for Hug Power.”
DONNYBROOK HOSPITAL Kevin spent 6 days there following his stay in BRH, as I was suffering severely with a stomach bug and was unable to care for him. Donnybrook was a great experience for Kevin, who was able to enjoy the bush walks around the hospital and the flexibility offered by a small country hospital, even to the extent of the staff taking Kev for a Sunday drive!! Many thanks to Carol, Kev’s sister who lives in Donnybrook and visited twice daily with his Power Smoothies. I know how much Kev loves them, so a big ‘thank you!!’
EXPLOSIVE EPISODES In the last 2 weeks Kevin has had two strange episodes. The first was in hospital on 8 September, when he became highly agitated, lashing out and YELLING. It was like a huge release of grief and anger. It was really unpleasant for all involved and of course very distressing for Kevin. The agitation returned the next morning, medication was given and at first we thought his subsequent
behaviour was a side effect. He was suddenly smiling, compliant and trying to form words; this lasted for 13 hours, during which he made appropriate statements such as
“nice”, “blue sky”, “go pee”, “you get drink now”, “quick, quick”, “Where’s Dad?” – approx 50 words that day. It was as if he had returned from holiday and was so happy to see everyone again, the clouds had cleared and he could see the real world once again. He initiated humour, winking at me and then getting a reaction from others. The best part was the delighted chuckling.
The second episode (without the initial explosion!) was on 17 September, with heightened awareness, a prolonged wake period of 15.5 hours, and a huge amount of verbalisation and interaction. During this amazing episode (which unfortunately started at 5:30 pm and ran throughout the night), Kevin wanted to know where and when his accident had been and how old he was. A lot of this was communicated by way of single words and gestures. He also counted and did lots of other amazing stuff!!
· He remembered the number for the combination lock, which of course he hadn’t used for 15 months, since before the TBI.
· When asked who Rubie was, he answered “Daughter”. I replied, “Granddaughter?” He replied, “Yes”.
· He also spoke to Kendie on the phone, wanting to know where she was and to come and see him, and told her “Love you”.
During this episode of heightened speech and communication, the left pupil was enlarged and sluggish to light stimuli.
Jean and Sharon were able to witness this wonderful transformation, but later in the morning we ended up at the hospital as Kevin became highly distressed and insistent upon returning to our old home. IM sedatives were used to calm him. After a night in hospital and the provision of some “emergency drugs”, we returned home and had a delightful weekend with Kevin at a level of happiness and calmness that we had not seen in many months, along with increased verbalisation and meaningful interaction. It is almost as if there has been a “brain storm” and some rewiring has taken place.
With this latest admission to hospital, the paramedics, police (standard precaution) and hospital staff were fantastic with their gentle and reassuring approach. I found a discussion with a neuropsychiatrist at BRH particularly reassuring.
FOXTEL Kevin pointed at an ad for Foxtel (cable TV) several weeks ago, saying “Yes, yes”. So, much to his delight, we now have Foxtel connected, offering some stimulation and aiding memory recall; he’s been watching the old sci-fi pics and a few Golden Oldies.
GASTRONOMIC DELIGHTS Since his “brain
storms”, Kev’s sense of taste appears to have returned. He’s loving home-cooked meals again (sorry Macca’s, you miss out), enjoying curries, stroganoff, marmalade, fruit, vegies, carrot cake and juices. I plan on giving him a few cookbooks to choose what he would like to eat. Any fave recipes would be gratefully received, so I can cook a meal for Kev, from YOU!!
HEAD ITCHING AND HIGH HEELS Kev’s head gets incredibly itchy along the scar lines, and this appears to have increased with the “brain storms” or the lead-up to one – watch this space for confirmation. And NO, it’s not nits or dandruff!!
It was suggested that we use ladies’ high heels (wedge type) to support Kev’s feet when walking – very successful and I think the trade off between drag queen look and walking stability is well worth it!
INDICATE Kevin is now able to
indicate consistently and precisely his needs and wants and dislikes to an even higher level through verbalisation, gestures and writing and drawing. The writing and drawing is done in “window periods of opportunity”.JUST TREADING WATER Lots of days and hours of this. For those of you who have seen Ground Hog Day, we are the crowd in anticipation and Kev is the Ground Hog – he comes out when he is ready and there is NO pushing him. Mind you, the Ground Hog is very popular, cute and well worth the wait!! So we will keep treading water as his brain continues to heal.
KILOS AND KINDNESS Kev is maintaining his weight around the 75kg mark, so well done Kev!
Kindness has been abundant, with a visit and ongoing phone support from the France family, a pressie from Dad and Margaret, a card and video from Joy, phone calls from Mum and Nicole, visits from Graham and Janet, Jean (and your ongoing supply of continence products for Kev is such a HUGE help), Sharon (the great body pillow and writing gear), Pete (who was finally rewarded with some great smiles and interaction last Saturday with Kev), Tony and Linda (thanks for the yummy meals), Tyron, David and Alex and everyone else who has popped into both the hospital and home.
At times it is very hard to faithfully keep on visiting when the usual sleepy Kev is unresponsive or stares uncommunicatively; this is not personal, but perhaps he is still in the twilight of the coma much of the time, or perhaps he is just putting the pieces of the jumbled puzzle together, much as a baby would when learning about the world. All visits do mean something as Tony and Linda found out. Kev did not know them before the TBI but have taken time to visit on many occasions; at the time of Kevin’s last “brain storm” he looked straight at Linda and said “I saw you” (he had seen her at the hospital).
Also, much gratitude for the kindness shown by all who helped with The Garage Sale, lifting, shifting and cleaning. Phew, we made it! To mention a few: Neville and Ethel, Dee, Lynette, Lynne, John and Leanne, Aidan, Janet and Graham, Ian, Anne and family, and everyone else who helped – I’m sorry, I’m not too good at remembering names, especially with everything that goes on every day! And I know Kevin in particular will be so grateful for the huge help given by Luke and Ryan in setting up the electrical wiring for the swim spa, which we hope will benefit Kevin enormously.
And of course thanks for the welcome, support and understanding of Albert and Sharon, John and
Irene, Louis and Mari-Anne, and Janet and Graham. In addition, I want to say a special “thank you” to a number of people who either met Kevin briefly when he was in the UK in 2000 or have never met him at all but know of him through Kerry and Paul and have given Kevin continence aids and therapy sessions. So heartfelt thanks to Keith and Sylvia (Manchester), Rosemary and Tony (Chester), Zorica (Leeds), and Lori and Paul (Fort St John, Canada). Your support goes such a long way!
LAUGHTER is definitely the best medicine, which is why it is so delightful to hear the occasional chuckle from Kev. It’s also
great for the rest of us, as I don’t think any of us would survive without seeing the funny side of things at least occasionally.
MEDICATION Kev is on a slightly raised dose of Keppra (an antiepileptic drug). He has gone back up to 750mg, from 500mg. This has stopped his leg twitches and he seems to be having longer periods of wake times. He is also taking Efexor (venlafaxine) for anxiety and depression – a great help. Pressin has been introduced for a mildly enlarged prostate. Plus he has as-required medications that are calmative when he has over-heightened behavioural activity.
NERVE-RACKING All the highs and lows and ongoing issues that need sorting are not only time-consuming, but take their toll, so out with the B vitamins!
OLFACTORY SYSTEM Seems to have kicked in big time with Kev’s “brain storms”; he now loves to sniff aftershave, fresh linen, liniment, perfume and food!
PEG The feeding tube, aka Jake (diddle-iddle-iddle-um, with his extra leg…), was removed late June, by default! There were some thoughts of replacing it, but we rode it out and now Jake is no more and Kev is maintaining a great diet of food and fluids.
QUENCHING Kev’s need for fluids is no longer the drama it was. He consistently drinks 1.5–2.5 L of fluid per day. He has not required thickened fluids at all, as is often the case for people learning to drink again.
RIGHT-SIDED WEAKNESS continues to improve dramatically, with Kevin using predominantly his right hand for tasks such as eating and drinking. Verbal prompts are still needed at times to encourage the use of his right hand with dressing. He’s able to lift his right foot independently while walking. Walking with either the “buddy” system or with the gutter frame has its strong and weak days.
SPA AND SMILES Thanks to Luke and Ryan’s great work, the swim spa
is up and running and Kev has been in it 4 times now, including twice yesterday!! He is floating with assistance, has put his head under the water voluntarily and seems fairly confident. He also showed great joy yesterday holding Rubie in the water, enjoying both smiles and
giggles. What a delightful scene! How far along the journey have we come since this time last year!
TELEPHONE AND THERAPISTS Kev has had some great telephone conversations lately, with clear verbalisations at times of “hello”, “yes”, “OK”, “See you”, “Bye-bye”, “Where?” (Kevin likes to know where people are, as he tries to piece his world
back together) and even a “Love you”. So let YOUR fingers do the walking, even though you may not get a lot of feedback from Kev, YOUR phone call makes a huge difference to his will power and feelings of worthiness. Just chat to him as you would have done before his injuries.
I want to mention all the wonderful therapists who have been part of Kevin’s journey; no doubt it would have been a very different outcome at this stage without you all!! Our homeopath, Marg; osteopath David in Perth; Chinese acupuncturist Gordon in Perth; Fitchs Pharmacy, Perth; acupuncturists Pete and Megan in Bunbury; cranial osteopath Craig in Bunbury; Annette; and the latest additions to the complementary healers, physio and Feldenkreis practitioner Rae and chiropractor David. The collective wealth of information, guidance, reassurance and wisdom that you all have shared and the time that you have given us when required, have put wind in our sails to help us to find the way (impatiently in my case) through the calm and sleepy seas as well as the turbulence and storms; the journey will be long, and your ongoing support is valued more than one could ever express.
UTILISING WINDOWS OF OPPORTUNITY Due to the inconsistency of “routine” (not for lack of trying!), each day is varied. Windows of
opportunity are found to extend Kev’s rehabilitation. To utilise these to the max, one needs to be pretty creative, maybe talking about the colour of cars, getting Kev to give directions while driving, visiting when the mood takes him, watching Foxtel in the wee hours, chatting on the phone. It’s all about seizing the opportunity to share and interact. Most of all, utilising every opportunity to help Kevin feel valued, wanted and loved with dignity, respect and his individuality intact.
VERBALISING AND VIDEOS Well, can you believe it?? The “brain storms” of last week seem to have unleashed meaningful, comprehensive (and, yes limited – but hey, these things take time) speech, e.g. when Natahlia was “sneakily” taking a video of Kev with her mobile phone last night, he
cracked a smile and a chuckle, gestured with his hands and said “Video”. On both episodes of storms, he has spoken consistently for a period of hours, and moved up a notch or two with yet more constant verbalising.
We have taken LOTS of video footage over the months, and are hoping to find a way to load it so it can be accessed from this site, so WATCH this space.
WELCOMING WANDERERS AND WALKING Kev was (as we all were) overjoyed to have Marcus and Renae safely home from their
travels and was delighted with some yummy chocolate from Switzerland and delicious smelling men’s perfume – great timing as his sniffer is back in good working order.Kev amazed me one day by crawling into the garage, spotting his walking frame and standing up at it, then using the
brakes appropriately as he independently walked 100 m, with one cheering, anxious wife following!! The Achilles tendons remain tight and we work on this daily, so tiptoeing is de rigueur at the moment. The consultant at Bunbury Regional Hospital is confident that this is the start of things to come! GO KEV.X-RAY Due to Kerry’s great and persuasive negotiation skills, Kev’s back was X-rayed in A&E, revealing several vertebrae in the upper half of his back with highly compressed discs, ‘bone on bone’; it is possible that Kevin is suffering some degree of pain from this.
YOU’VE nearly heard all the news (so far) from us; we’d love to hear news from you, so please drop us a quick note – just saying “Hi” would be great. Even better would be some thoughts, comments or suggestions.
YESTERDAY was one of the best days Kev has had, if not the best. He was awake early, went into town for a drive between 9 and 11:30, stayed in the car with Paula while I did some errands and also ate yummy carrot cake and drink. He slept for 3 hours after returning home and then had a lovely visit from Rubie and Kendie – he really fussed over Rubie! Then a great swim in the spa, returned to bed for a short while, went for a drive, came home and requested another spa (went next to spa and
undressed). Back to bed, watched TV, spoke to Kerry on the phone, and when Nat and Bren came home he had a fantastic time with them laughing and joking. He was also very affectionate with them, pulling them to his chest, hugging them and stroking their hair. Slept well overnight. Exhasted today, and so he is...
…ZZZZZZZZZZZZZZZZZZ ZZZZzzzzz zzzzzzzzzzz Kev still does plenty of this, some days up to 22 hours if he is unwell or exhausted.
Read more!
Monday, 23 June 2008
Home again and a bumpy ride awaits!!
(Late May, up to early June)
When we brought Kevin home from respite in Perth, we found that, for whatever reason, Kevin didn’t walk or crawl while there. His footdrop has (excuse the pun) taken a huge step backwards, with probably a good 10 weeks of work being lost. He was unsettled upon his return, has had a UTI and now a very nasty cold with aches and pains, so it will no doubt be some time before his feet return to their stage of recovery in mid-May.
Staff where Kev was staying were intrigued at the level of higher function he displayed on the video footage I showed them, and they found it hard to believe that it was the same man they’d looked after for 3 weeks.
We found Kev more withdrawn and with a much lower functioning level; his agitation was high and he had what I can only describe as “separation anxiety”, so we’ve had lots of work to do in comforting and reassuring him. There was marked improvement in all areas by the second week after returning home and after the UTI was treated.
On 25 May a registered nurse (Sharon) commenced working with Kev for 4 hours on Saturday and Sunday mornings, then an Enrolled Nurse (Shirley, who is also a Social Trainer) commenced on Monday–Friday mornings for 4 hours. This is to continue for 8 weeks. One of three support workers (Mark, Carrie and Paula) also stays for 8 hours per day Monday–Friday. It is great to have everyone on board, and the independent documentation from health professionals is especially helpful.
Over the last 8 days, however, Kevin has been ill fighting a nasty bug, as mentioned above (yes, caring is sharing, and we all have had it!).
I have noticed that Kev is responding much more quickly (often immediately) to verbal requests. He is showing much stronger signs that he is understanding all that is going on around him. For example, when Kev transferred to his chair from the spa and I said “Shirley, I should’ve put a towel on the chair”, Kev promptly stood up (pushing on both sides of wheelchair) and looked at Shirley as if to say “Come on then, put the towel under!”
Even though there have been some backward steps, we have had some positive gains:
“Kevin understands all communication and will verbalise when he doesn’t wish to do anything or comply with requests.”
“Kevin does take his own weight – he uses a monkey bar and any stationary furniture (self-initiated) to manoeuvre himself from a–b. Little assistance is given by carers –mainly placing of feet and removing objects (Kev will remove objects if needed).”
“Able to follow prompts and indicate with yes, no, mmm and thumbs up.”
“Kevin managed to attend his own shave and attempted to clean his own teeth.”
“Kevin does work out the easiest way for himself during and before transferring.”
“Can indicate with gesture for assistance or none.”
“Kevin very aware of all activities today. Kevin exercised his own right hand after verbal prompts.”
Treatments
Quantum Medicine
After research and much consideration we have introduced Quantum Medicine, which is basically a Russian treatment based on physics. The idea is that it fine tunes the body (much like tuning in a radio and clearing the static) so the meridians are clear, to enable the body to get on with the job of healing.
Osteopathy
Annette has recommenced Kev’s treatment on Thursdays at lunchtime.
Massage
Lynette has restarted assisting us on the journey of reverting the footdrop and doing some general massage; these techniques will be passed on to the support workers.
Homeopathy
Hypericum is currently being used.
Aromatherapy
Using lots of lavender and a little orange, as needed.
Meds
I try to pass on/document as many positives as I can, but the reality is that every day remains a struggle. It was difficult for us all to mark the 1 year since Kev’s trauma, and especially difficult for him; he was highly agitated, especially the day before, and did not want to be alone at all on the night of the 29 May. Kevin sleeps as much as 18 hours per day, especially since being ill so much in the last 4 weeks.
Practically, we have to deal with the ongoing incontinence and associated mountains of washing, broken nights, agitation and frustration, difficult behaviour (requiring diversionary management). However, we continue to gently initiate and encourage further improvement, however small that may be, and recognise every step forward as a hopeful building bloke for bigger things to come. At times Kev calls out in a constant chant, which to me seems almost like a Tourette’s-type behaviour. I am trying to keep afloat a positive attitude and maintain a willing determination.
On top of all this all are the ongoing legal and medical issues and sorting through the lifestyle changes and balanced decisions that need to be made.
At times life is very lonely. It is so lovely to get a message from those who care. Special thanks to Lewis and Mary-Anne Winter, who have really gone out on a limb with practicalites. Also to Lynne Lovette, who came to visit with her dear wee boy and McDonald’s to cheer me up, and to Tony and Linda –the chicken pie was delicious!! Thanks Sharon and Albert for your listening ears, and for your visits Kim, always remembering to pop in and say hi to Kev.
And the ever-faithful Sharon, who never fails to come and see us every week, and Pete, who was able to take Kev for a drive, and to the lovely comments forwarded on Kev’s site. You guys all add sunshine to the darkest day. It really means so much. Read more!
When we brought Kevin home from respite in Perth, we found that, for whatever reason, Kevin didn’t walk or crawl while there. His footdrop has (excuse the pun) taken a huge step backwards, with probably a good 10 weeks of work being lost. He was unsettled upon his return, has had a UTI and now a very nasty cold with aches and pains, so it will no doubt be some time before his feet return to their stage of recovery in mid-May.
Staff where Kev was staying were intrigued at the level of higher function he displayed on the video footage I showed them, and they found it hard to believe that it was the same man they’d looked after for 3 weeks.
We found Kev more withdrawn and with a much lower functioning level; his agitation was high and he had what I can only describe as “separation anxiety”, so we’ve had lots of work to do in comforting and reassuring him. There was marked improvement in all areas by the second week after returning home and after the UTI was treated.
On 25 May a registered nurse (Sharon) commenced working with Kev for 4 hours on Saturday and Sunday mornings, then an Enrolled Nurse (Shirley, who is also a Social Trainer) commenced on Monday–Friday mornings for 4 hours. This is to continue for 8 weeks. One of three support workers (Mark, Carrie and Paula) also stays for 8 hours per day Monday–Friday. It is great to have everyone on board, and the independent documentation from health professionals is especially helpful.
Over the last 8 days, however, Kevin has been ill fighting a nasty bug, as mentioned above (yes, caring is sharing, and we all have had it!).
I have noticed that Kev is responding much more quickly (often immediately) to verbal requests. He is showing much stronger signs that he is understanding all that is going on around him. For example, when Kev transferred to his chair from the spa and I said “Shirley, I should’ve put a towel on the chair”, Kev promptly stood up (pushing on both sides of wheelchair) and looked at Shirley as if to say “Come on then, put the towel under!”
Even though there have been some backward steps, we have had some positive gains:
- Crawling well up and down steps independently
- Transferring independently into the car at times
- Opening the 1.5 metre-high gate independently when requested
- When given keys to a room, he will work out which key is needed and go to the room and open it independently
- Mobile and independent inside and outside of house (opens all doors)
- Using toilet appropriately at times
- Able to put shirts, underwear and trousers on with little or no help
- Able to “bridge” (lifting his hips, which enables clothing to be put on and off without using the rolling technique)
- Brushing teeth in a limited fashion, even opening his mouth and doing upper and lower teeth at times (inconsistent)
- Really enjoys visitors, usually family on Sunday evening; he makes an effort to get up and sit in lounge
- Drew a picture of a person (a first)
- Enjoying spa again; self-initiated walking to spa, getting in with minimal assistance (we were doing a ‘top-and-tail’, with one person lifting under the arms and the other lifting under the knees, to get him in and out until 2 weeks ago)
- Compliant at most times with going for walks (he refused to do so for some time)
- AND THE BIG ONE: went into Target and got a shirt, staying long enough for his supporters to have morning tea!!!! This is the first time that he has been able to tolerate going into such a busy environment
- Back into changing the gears and putting the handbrake on and off at appropriate times
- Really switched on to traffic light changes, pointing and verbalising instantly at times when the light turns green.
“Kevin understands all communication and will verbalise when he doesn’t wish to do anything or comply with requests.”
“Kevin does take his own weight – he uses a monkey bar and any stationary furniture (self-initiated) to manoeuvre himself from a–b. Little assistance is given by carers –mainly placing of feet and removing objects (Kev will remove objects if needed).”
“Able to follow prompts and indicate with yes, no, mmm and thumbs up.”
“Kevin managed to attend his own shave and attempted to clean his own teeth.”
“Kevin does work out the easiest way for himself during and before transferring.”
“Can indicate with gesture for assistance or none.”
“Kevin very aware of all activities today. Kevin exercised his own right hand after verbal prompts.”
Treatments
Quantum Medicine
After research and much consideration we have introduced Quantum Medicine, which is basically a Russian treatment based on physics. The idea is that it fine tunes the body (much like tuning in a radio and clearing the static) so the meridians are clear, to enable the body to get on with the job of healing.
Osteopathy
Annette has recommenced Kev’s treatment on Thursdays at lunchtime.
Massage
Lynette has restarted assisting us on the journey of reverting the footdrop and doing some general massage; these techniques will be passed on to the support workers.
Homeopathy
Hypericum is currently being used.
Aromatherapy
Using lots of lavender and a little orange, as needed.
Meds
- Keppra 750 mg for epilepsy
- Respiradone 0.25mg at night
- Nutritional supplements
- Opti Endura (to rebuild muscles, revert muscle wasting and to supplement diet; very obvious increase in muscle tone)
- Olive leaf extract as a general tonic for treating depression and UTIs and building the immune system
- Magnesium for muscle cramps and muscle health
- Rocket Formula (multivitamins with ginseng, ginko, chromium and selenium)
- 22 Certified Organic Wholefoods (1 tspn per day)
I try to pass on/document as many positives as I can, but the reality is that every day remains a struggle. It was difficult for us all to mark the 1 year since Kev’s trauma, and especially difficult for him; he was highly agitated, especially the day before, and did not want to be alone at all on the night of the 29 May. Kevin sleeps as much as 18 hours per day, especially since being ill so much in the last 4 weeks.
Practically, we have to deal with the ongoing incontinence and associated mountains of washing, broken nights, agitation and frustration, difficult behaviour (requiring diversionary management). However, we continue to gently initiate and encourage further improvement, however small that may be, and recognise every step forward as a hopeful building bloke for bigger things to come. At times Kev calls out in a constant chant, which to me seems almost like a Tourette’s-type behaviour. I am trying to keep afloat a positive attitude and maintain a willing determination.
On top of all this all are the ongoing legal and medical issues and sorting through the lifestyle changes and balanced decisions that need to be made.
At times life is very lonely. It is so lovely to get a message from those who care. Special thanks to Lewis and Mary-Anne Winter, who have really gone out on a limb with practicalites. Also to Lynne Lovette, who came to visit with her dear wee boy and McDonald’s to cheer me up, and to Tony and Linda –the chicken pie was delicious!! Thanks Sharon and Albert for your listening ears, and for your visits Kim, always remembering to pop in and say hi to Kev.
And the ever-faithful Sharon, who never fails to come and see us every week, and Pete, who was able to take Kev for a drive, and to the lovely comments forwarded on Kev’s site. You guys all add sunshine to the darkest day. It really means so much. Read more!
Sunday, 22 June 2008
To all those who have visited, phoned, and written to Kev, and to those who have hesitated because they don’t know if it will mean much to him
Gail and Kevin had never met before the night of 29 May 07. They first met when Kevin lay unconscious at the side of the road. Gail spent approximately 50 minutes reassuring, comforting and doing the best to care for Kev under extremely stressful circumstances. Words were the best Gail could offer and were, as time has proved, the most powerful healer at the time and a springboard for healing in the future.
You see, Gail and Kevin did not meet again until 24 May 08, nearly 1 year later, and the following shows how powerful a connection can be formed in the subconscious...
Gail knocked on Kev’s bedroom door, "Hi Kevin, it's Gail". There was no hesitation as Kevin made direct eye contact and said a clear "Hello". (This is not a common occurence, especially with "strangers"). Kev then reached out for her and took hold of her arm. He indicated for me to leave the room and they spent some time together. There was no doubt in anyone's mind that there was a definite emotional connection or how powerfully those words of encouragement had deeply affected his soul.
If someone with no previous emotional bank account can make such a massive impact on Kev's subconscious well-being, how much more can those who have an emotional connection with him help him?
What this has shown is that all of you who have made such a huge and loving effort to be with Kevin in the last year and those who have spoken to him on the phone (even if he has been unable to respond verbally) and sent messages of care and hope have assisted Kevin in taking the baby steps to recovery. Rest assured that your efforts have definitely not been in vain. You have given hope and a guiding light in the road of recovery.
As time goes on, I'm sure you all think of Kev often; however, you may not realise that just a few minutes of your time can make a huge difference to a long day and give hope and purpose.
There is a saying that "It takes a village to raise a child". I ask you, "How many people does it take to raise a man from the depths of a coma and then raise him to his optimum level of recovery?" The initial stage is 5 years. Please help by giving a few minutes of your time in communication once a month. Put your loving thoughts into words; they speak louder than thoughts.
Read more!
You see, Gail and Kevin did not meet again until 24 May 08, nearly 1 year later, and the following shows how powerful a connection can be formed in the subconscious...
Gail knocked on Kev’s bedroom door, "Hi Kevin, it's Gail". There was no hesitation as Kevin made direct eye contact and said a clear "Hello". (This is not a common occurence, especially with "strangers"). Kev then reached out for her and took hold of her arm. He indicated for me to leave the room and they spent some time together. There was no doubt in anyone's mind that there was a definite emotional connection or how powerfully those words of encouragement had deeply affected his soul.
If someone with no previous emotional bank account can make such a massive impact on Kev's subconscious well-being, how much more can those who have an emotional connection with him help him?
What this has shown is that all of you who have made such a huge and loving effort to be with Kevin in the last year and those who have spoken to him on the phone (even if he has been unable to respond verbally) and sent messages of care and hope have assisted Kevin in taking the baby steps to recovery. Rest assured that your efforts have definitely not been in vain. You have given hope and a guiding light in the road of recovery.
As time goes on, I'm sure you all think of Kev often; however, you may not realise that just a few minutes of your time can make a huge difference to a long day and give hope and purpose.
There is a saying that "It takes a village to raise a child". I ask you, "How many people does it take to raise a man from the depths of a coma and then raise him to his optimum level of recovery?" The initial stage is 5 years. Please help by giving a few minutes of your time in communication once a month. Put your loving thoughts into words; they speak louder than thoughts.
Read more!
Wednesday, 21 May 2008
True inspiration!
Two and a half weeks ago Kev went to Aylesford House, a Brightwater rehab unit in Perth, for 3 weeks’ assessment/respite. To stop me worrying about him and jumping in the car to rush and see him, I’ve spent 2 weeks in Bali, with all four girls coming for different lengths of time.
This has given us all some much-needed breathing space as I try to plan our next move in Kev’s road to recovery. I felt at a loss as to what the next step should be and was concerned as there was a definite relapse, most likely caused by me being very tired and needing lots more support for both of us in his daily life.
I have been told that a repeat CT, bloods, oral hygiene and Kev’s footdrop will be attended to during his stay. After meeting the staff and seeing how they handled things, I felt confident to take the leap and leave him in their care.
So this was an opportunity with great timing and I’ve had lots of great things happen that have empowered me and given some positive direction:
1. Read a book called “Paper Cranes” by Cheryl Koenig, whose son Jon had a massive TBI (GCS 3). She went with her gut instinct and would NOT allow her vision to be clouded by negativity and those who dwelled on the negative. Doctors “wrote him off”, but she refused to believe Jon wouldn’t recover from his injuries. From the start she was determined that he would get well. As a result of her initiative and hard work Jon is now working part-time after completing year 12 at school. He now walks and even runs! He is able to eat, talk and look after his personal needs. We are talking here about someone who was given the prognosis of being a so-called “vegetable” (hate that word; you know – would you like to be a kumara or potato, cauliflower or broccoli?). It’s a great book, and I encourage all who want an insight into our journey to read it. Cheryl has gone on to become an active campaigner, and among other things is a member of an advisory panel for the Australian Brain Injury Association.
I have been in touch with her via email and she has responded promptly and with great warmth and compassion; this in itself makes the journey not so lonely! She has some great suggestions and fantastic contacts for networking, e.g. Bobath physiotherapy (she has given me the name of a physio, Gavin Williams, whose praises she sings for his unique and tailored work), Dr Ted Freeman (author of a book called “The Catastrophe of Coma” that has been a tremendous inspiration to many in our situation; see here for a great interview) and the Epworth Centre of Rehabilitation for ABI in Melbourne.
2. Met a lovely lady, Shelly, who lives between Bali and Christchurch. Eight years ago she had a horrific accident and was treated by a family friend who is very well known for his work, which involves the use of the Feldenkrais Method. And yes, his forté is spinal and head injuries. He goes to Bali once every 2 years or so, and amazingly he was in Bali at the same time as me! Shelly told him about Kev and he met up with me twice. His name is Patrick Douce and he was nothing short of amazed when he viewed Kev’s progress over the last 8 months (we have video footage on the video camera).
Patrick lectures professionals and works with people who have injuries such as Kev’s and, as I said, was very impressed. He said that he has complete faith that Kev will keep on healing and that he has great potential!! Well, I’m walking 10 foot tall (and as a bit of a shorty, that is saying something!).
Patrick and Shelly will keep in contact via email, so that’s another two great supporters. Thanks Patrick and Shelly!
3. Shelly has experience in employing Balinese people and may be able to help with getting staff to assist with Kev (for this, we DO have some funding for Kev).
4. Met some amazing people with story after story of the ability to heal after massive injury. One guy sustained TBI when he was run over, and he was in a coma for months. Six years later he works as a plumber again and cares for himself. A NZ girl who fought the odds had her spine fused; her parents sold their home to pay for treatment and then spent 1 year teaching her to walk again, etc., etc. …
The common thread in all these stories and the message coming from all the people mentioned here are the belief that the body will heal itself and the importance of treating the recovering person with dignity and respect. Having no doubt!
So, on to the next exciting episode of “Caring for Kev”. Read more!
This has given us all some much-needed breathing space as I try to plan our next move in Kev’s road to recovery. I felt at a loss as to what the next step should be and was concerned as there was a definite relapse, most likely caused by me being very tired and needing lots more support for both of us in his daily life.
I have been told that a repeat CT, bloods, oral hygiene and Kev’s footdrop will be attended to during his stay. After meeting the staff and seeing how they handled things, I felt confident to take the leap and leave him in their care.
So this was an opportunity with great timing and I’ve had lots of great things happen that have empowered me and given some positive direction:
1. Read a book called “Paper Cranes” by Cheryl Koenig, whose son Jon had a massive TBI (GCS 3). She went with her gut instinct and would NOT allow her vision to be clouded by negativity and those who dwelled on the negative. Doctors “wrote him off”, but she refused to believe Jon wouldn’t recover from his injuries. From the start she was determined that he would get well. As a result of her initiative and hard work Jon is now working part-time after completing year 12 at school. He now walks and even runs! He is able to eat, talk and look after his personal needs. We are talking here about someone who was given the prognosis of being a so-called “vegetable” (hate that word; you know – would you like to be a kumara or potato, cauliflower or broccoli?). It’s a great book, and I encourage all who want an insight into our journey to read it. Cheryl has gone on to become an active campaigner, and among other things is a member of an advisory panel for the Australian Brain Injury Association.
I have been in touch with her via email and she has responded promptly and with great warmth and compassion; this in itself makes the journey not so lonely! She has some great suggestions and fantastic contacts for networking, e.g. Bobath physiotherapy (she has given me the name of a physio, Gavin Williams, whose praises she sings for his unique and tailored work), Dr Ted Freeman (author of a book called “The Catastrophe of Coma” that has been a tremendous inspiration to many in our situation; see here for a great interview) and the Epworth Centre of Rehabilitation for ABI in Melbourne.
2. Met a lovely lady, Shelly, who lives between Bali and Christchurch. Eight years ago she had a horrific accident and was treated by a family friend who is very well known for his work, which involves the use of the Feldenkrais Method. And yes, his forté is spinal and head injuries. He goes to Bali once every 2 years or so, and amazingly he was in Bali at the same time as me! Shelly told him about Kev and he met up with me twice. His name is Patrick Douce and he was nothing short of amazed when he viewed Kev’s progress over the last 8 months (we have video footage on the video camera).
Patrick lectures professionals and works with people who have injuries such as Kev’s and, as I said, was very impressed. He said that he has complete faith that Kev will keep on healing and that he has great potential!! Well, I’m walking 10 foot tall (and as a bit of a shorty, that is saying something!).
Patrick and Shelly will keep in contact via email, so that’s another two great supporters. Thanks Patrick and Shelly!
3. Shelly has experience in employing Balinese people and may be able to help with getting staff to assist with Kev (for this, we DO have some funding for Kev).
4. Met some amazing people with story after story of the ability to heal after massive injury. One guy sustained TBI when he was run over, and he was in a coma for months. Six years later he works as a plumber again and cares for himself. A NZ girl who fought the odds had her spine fused; her parents sold their home to pay for treatment and then spent 1 year teaching her to walk again, etc., etc. …
The common thread in all these stories and the message coming from all the people mentioned here are the belief that the body will heal itself and the importance of treating the recovering person with dignity and respect. Having no doubt!
So, on to the next exciting episode of “Caring for Kev”. Read more!
Thursday, 1 May 2008
April antics
Well where does one start with such a vast emotional roller-coaster of success and challenges, highs and lows?
Read more!
Physical achievements
Perfected cross-crawling - what originally took 15 mins to cover, he managed in record time of just over 1 minute within only 7 days. April saw Kev determined to manage this level of independence. Cross-crawling is fantastic because having both the left and right hemispheres working in harmony exercises the brain! He even crawls backwards when necessary.
Wonderful transferring from bed to chair, chair to bed, floor to chair, chair to floor, bed to floor, floor to bed, chair to bus and cars with minimal assistance. These skills have been witnessed by many others.
By mid-April Kev was requesting to get into the front seat of the bus (quite a feat for even the mobile). He initiated and organised the transfer, and I followed his lead to do so – his efforts were very successful, not to mention great for his sense of achievement.
He also developed an independent technique for transferring from his massage chair into his wheelchair, pulling the chair over and sitting on the arm of the massage chair, then with many small manoeuvres getting himself into the wheelchair. The first attempt took 10 mins, but he showed no level of frustration and displayed complete perseverance. Take a look at this! 
Other developments
- Lifting the footpads on his wheelchair to propel it by moving his feet.
- We developed a “buddy walking” system where Kev puts his arms around the shoulders of two people and walks in this fashion; this gives him a great stretch and helps him stand tall.
- Wheeling up and down ramps independently.
- Jean’s friend has kindly leant us a standing frame that he made. It attaches to the bench. So far Kev has only been able to use it a couple of times, but it will be great to use in the future to assist in reverting the footdrop.
- Initiates walking down stairs using buddy walking; there are just two steps, but it’s very successful and we are really proud of him!
- Not at all keen on showering, and getting frustrated with shaving at times. Maybe this is related to repair of the axonal diffusion, which causes nerve damage throughout the body?
Tuesday, 1 April 2008
The beat of March: steps forward, steps back
March started with Kevin being more settled, with lessened agitation, increased appetite and tolerating regular therapeutic massage. Phew!! Even showering became a lot more tolerable, with Kev controlling the taps himself. At the same time, his stomach became more settled, a big relief!He was using his gutter frame for walking, lifting his right foot well (a huge improvement from the very little movement in his right side 3 months ago), and continued to enjoy outings in the car. Kev being Kev, he continues to love anything mechanical and changes the gears in the ute with precision.
I went out for 2 hours one evening and the girls stayed at home with Kevin and had friends over. Kev forfeited his usual early bedtime – it became apparent that he wanted to stay up to keep an eye on his “girlies”. Dads continue to watch out for their daughters (not to mention their baby granddaughters!) when there are lads around, even when the dads have TBI! Good on you Kev!!However, I have found that leaving him too frequently leads to increased anxiety and agitation and decided that I need to try to organise regular times and days for outings. Before that can happen though, we have to face the ongoing hassle of trying to get the wheels in motion for support for Kev.
So the month started off on a positive note, but unfortunately, after a week of being relatively settled, the anxiety and agitation returned. Kev started to slip into what I suspect strongly is that big black hole of depression. Smiling has become a thing of the past.
We had to restart using his PEG tube for meals, as he wasn’t eating so well again. At the same time he started sleeping for very extended periods, up to 20 hours daily. I find the lack of guidance from the medical professionals very unsettling and I feel very unsure of myself. But on a positive note, overall Kev's reactions show a higher awareness of what is going on – with no ‘appreciation’ of his situation, he would not be in this state. So, as we continue the journey, this development is not unexpected; what is unexpected is the unavailability of antidepressants.
In the third week of March Kevin had his first-ever(!) appointment with a neurologist, more than 9 months after his injury. Kev was very cooperative with the consultant, who was kind, patient, helpful and informative. To quote him, "The road ahead will be full of peaks and troughs and this is normal. Make the best of every day and seize the good things and put the difficult times down to the injury, NOT the person." I organised this one-off appointment with this particular doctor so that Kev can have ongoing care with a physician in Bunbury.
Despite the problematic aspects, Kev continued to cooperate with walking, at times initiating it himself, even with the difficulties in walking due to his foot drop. When friends were over one evening, Kev was impatient with waiting for me to assist him into bed – I found him standing beside the bed attempting to get in! He was found another day attempting to open Tahli’s door and was standing (bent over) holding onto the door, to get out onto the patio.
He continues to enjoy riding in the car, to the point that he will make a beeline to get to it as soon as no one is looking. One evening, I did a double-take when I saw him through the front window, attempting to climb into the car. Not only had he pulled himself up and opened the 2 metre-high gate and undone the ‘dementia proof’ lock on it, he had negotiated around the gate (the gate opening towards him), got to the ute and opened the door, and then manoeuvred his chair into the right position to transfer inside. I whizzed out in time to avoid injury and assist him as he climbed into the ute frontways with his left foot on the inside of the cab, hauling himself in.
At the end of the month Kev started to show more great developments. He wheeled himself to our room and when I went to assist him into bed, much to my amazement he was lying back there on the pillows! He had done a complete transfer to the bed independently from the chair (the monkey bar is of great assistance), then pulled his legs onto the bed and got the pillows sorted! Later in the day he pointed and jargoned for his bed. I suggested to Kev that if he wanted to go there perhaps he could crawl across. With no hesitation he manoeuvred from the chair to the floor independently in an extremely co-ordinated fashion. Then he promptly crawled the 6 m to the bed, without stopping!! All of this with no help or coaxing!! He needed very minimal assistance to get into bed, again using the monkey bar with both right and left hands, at times together, at times one hand at a time. Another huge step forward was Kevin doing his shoelaces up by himself!
Some other goodies in March:
- When Bren asked for Kev’s opinion of her artwork, he gave her a big thumbs up.
- Fussed over Rubie; they often had their arvo nap together.
- Jean, Kev’s mum, has helped out with some of Kev’s daily needs – these kindnesses go such a long way.
- Kevin seems to respond well to having his brother Pete around – he is cooperative and seems encouraged by Pete’s presence. Thanks Pete for the help you’ve given on trips to Perth and when you visit!
- Kev’s sister Sharon continues to be a calm influence, visiting weekly. Thanks Sharon for all your visits and the time you have taken to massage Kevin.
- Our old friends Albert and Sharon have continued to be tremendous supports. I can’t thank you two enough for all that you have done…
- Marian has become a much-appreciated visitor. Thanks Marian for all your hard work and efforts on our behalf!
- Ethel and Neville have dropped around on at least a couple of occasions and done a wonderful job in the garden to spruce it up. This is such a huge help and really helps us to feel that things aren’t totally out of control.
- Thanks too to Debbie, our bookkeeper, who found a stable table for Kev – I'd been looking everywhere for one, as it is loads better than balancing a pillow with a plate on top of it.
- The South West Times ran a full front-page article on Kevin, leading to two phone calls from two businessmen wanting to help and another from a lovely woman the girls know from riding club. Offers of help from strangers wanting to give their time is overwhelming.
- The big news of the month was Kev’s application for CAPS funding being accepted! In theory this is great, but in practice it is not easy to find reliable people who want the hard job of helping someone with needs as great as Kevin’s. On top of this, 15–30% of the funding gets taken off for ‘administration’, i.e. fees for the service provider that organises the staff! The funding was meant to be available from the 1st of March, but it could all take weeks to organise. The awarded sum looks good on paper, but… Watch this space!
Tuesday, 18 March 2008
The First Nine Months (up to the end of February 2008)
At the end of February it was 9 months since Kevin’s accident. During this time, he has fought for his life with great determination. He has overcome many obstacles and will no doubt have many more to tackle. Kevin is in the early stages of rehab, and we must look at his abilities, not his disabilities. We must see Kevin as still being Kevin, but we need to make the effort to reach out to him. His energies are going into healing and piecing the world back together. Like a giant jigsaw puzzle that has been thrown into the air and has landed in a muddle, he must sort through and put the pieces he can into order. We cannot do this for him, but we can support him through this time to maximize his recovery with patience and informed strategies. To be informed relieves fear of the unknown.Date of Accident
Cause
Initial Injuries
Other ‘Minor’ Injuries
Initial Prognosis
Forward Steps
12 Weeks: Complications in Trauma Ward
More Forward Steps: Still Alive and Fighting!!!
Home for 5 Weeks
Re-admission to RPH
Complications at
Steps Ahead
Discharged Home: 14 January 2008
KEV’S FIRST JOKE POST-TRAUMA! 11 January 2008
Complications at Home
Steps Ahead
Read more!
Many people fear being with those who are maimed; this fear is fuelled by ignorance and leads to their own personal discomfort, which in turn can lead to them not leaving their comfort zone and having an input. Research has proved that TBI (traumatic brain injury) does NOT affect intellect, therefore we must treat him as the Kev he has always been and still is. He is still a Dad, husband, son, older brother/brother-in-law, and friend. A 51-year-old man. Unfortunately it is human nature to treat others in a less fortunate situation as children.
If you put yourself into someone else’s shoes and experienced such pity, you would feel humiliated, frustrated and have poor self-esteem, emotions not conducive to positive healing. The last 9 months have led to many emotions and events in all our lives. I thank everyone for their positive support and love for Kevin. Here’s a summary of Kev’s time post trauma…
Date of Accident
29 May 2007
Cause
Most likely avoided another vehicle. Travelling at 30–50 kph – perfect riding conditions. Alcohol and blood testing negative. Still waiting for forensics to return findings. Waited approx 45 mins for ambulance. No spinal precautions or oxygen administered and no basic observations performed. Still waiting for an explanation from
Initial Injuries
- Traumatic brain injury (TBI). Left temporal contusion, left temporal haematoma.
- 0.5 cm left frontal haematoma.
- 0.5 cm right temporal contusion, two right temporal haematomas, each 0.5 cm in size.
- Traumatic subarachnoid haemorrhage.
- Intraventricular haemorrhage.
- Four subdural haematomas, approx. 0.5 cm each.
- Diffuse axonal injury (microscopic-level brain cell disruption).
- Brain partially herniated through base of right skull.
- Left-sided cerebral infarction as a result of impact.
The above injuries are likened to shaken baby syndrome.
Other ‘Minor’ Injuries
- Six fractured ribs.
- Basal skull fracture.
- Internal haemorrhage to left arm.
- Small 2 cm graze to right eyebrow.
To look at Kevin in ICU, he appeared to be sleeping peacefully. This perhaps made it hard for family to understand the significance of his injuries and what lay ahead.
Initial Prognosis
Very poor. We were informed Kevin was likely to be deaf and blind and remain in a vegetative state. We were not given the option to remove life support and had to honour the fact that he remained to fight the odds, including the following complications. I truly believe that Kevin has shown the desire to live and we are to support him in his choice.
First 16 days: Complications in ICU
- Raised intracranial pressure; burr holes and meds failed, right craniotomy (1/3 of skull removed).
- Infarct (stroke) following over-medication for low bloodpressure (BP), second craniotomy on right side to evacuate clot.
- Pseudomonas pneumonia (allegedly, Pseudomonas was growing in the ICU taps).
- Paralytic ileus (9 days BNO [bowels not open]), not treated until vomiting faeces.
- Staphylococcus infection in 2nd central venous catheter (CVC) line, causing extremely high temperatures, raised BP ++, raised pulse ++.
- Raised liver function, 40 times the normal limit, jaundice.
- Tracheotomy.
- Remains in coma.
I still have to go through the medical notes, as the middle four conditions would not have been brought to my attention. I had to assess Kevin myself and approach medical staff for a rundown – I presume there were other things that were not shared with us. I feel it is important to be informed, not in order to be critical of the care provided, but to be able to advocate for Kevin now and in the future. A good understanding of his condition will enable me to help him as much as I can in his need for ongoing care.
Forward Steps
Room decorated with family photos and two balloons from the girls, music playing, and aromatherapy. Still alive!! Shows his determination and will to live by increasing efforts to breathe when family is with him. Removed from respirator and holding his own. We are supported by nursing staff and able to do lots of personal care and massage.
12 Weeks: Complications in Trauma Ward
Undetected blocked catheter stirs Kev from deep coma because of the excruciating pain. Left 10 hours before being attended to, with minimal urine output (73 ml). PEG (tube feed) commenced, terrible time with feeds, 7 tried over a number of weeks. Doing quite well until cranioplasty (skull replaced), which led to hydrocephalus (water on the brain). Following deterioration, noted especially by physiotherapist, increased drowsiness and lack of response. Diarrhoea causing excoriation like none of us have ever seen before, resulting in intense pain and requiring extra bed rest; not treated, even though brought to staff’s attention numerous times; action finally taken when a stand-up argument with doctors takes place, after 8 weeks of being in this condition.
We are told by one doctor that there is no hope and to put Kev into a nursing home. This was 3 days after a meeting with Dad and me in which we were told Kev was doing well. I asked the doctor about certain medical practices and her response was the above. He is left dehydrated for approx 21 hours one time and 15 hours another, due to an ‘oversight’ by medical staff. Given morphine, followed by a clonic tonic seizure. Commenced on the antiepileptic drug (AED) Epilim, after which diarrhoea increased and severe abdominal pain developed, causing Kev to call out in pain and double up. Overdosed with medications: a second AED was added to the first, instead of the first being gradually decreased while the second was to be progressively introduced; this situation was not detected by staff, and when I brought this to the nurses’ attention I was told that I should not be looking at my husband’s chart! Kevin becomes more and more withdrawn, doctor decided not to do shunt, a decision that took them about 8 weeks to reach. Personal hygiene a real issue and not achieved to adequate standard by some staff, often left in soiled bed. We take Kev home after 14 weeks in hospital and are told to “wait and see”. Negotiate with staff for an ambulance transfer and for suction, which was needed twice daily for oral hygiene and while trialing on food and fluids in order to avoid aspiration and possible pneumonia. There were no suction units available and I was told that I shouldn’t really need one anyhow. My argument was that if it was used regularly in hospital it would be just as important to have access to a unit at home. In the end, no suction was supplied, but a unit was generously donated by dental firm. Supplied with a hired hoist and given a generous amount of supplies to start us out at home.
One of the most disempowering incidents was in a meeting with a neuro consultant where it was agreed that Kevin would not be subjected to any more routine or other tests without my knowledge (e.g. his generally stable condition meant that routine blood tests were considered unnecessary and should only be done if clinically required, especially as it was extremely hard to access veins that had collapsed); this was dishonoured within days and a contrast CT scan was performed shortly after I left the hospital. Lack of communication with staff appears to be a major problem.
More Forward Steps: Still Alive and Fighting!!!
Have seen “window periods” of lucidity. Reassuring – we know Kev is in there somewhere. Some physio achieved, told body in good working order; however, brain unable to co-ordinate consistent movement at the time. Limited movement attained. Takes two helpers to hoist
transfer as opposed to initial five helpers. Up in tilt wheelchair. Tracheotomy tube removed after 3 months (delayed substantially due to indecision about whether or not to perform shunt). Able to treat with homeopathy, aromatherapy, acupuncture and cranial osteopathy. Some nursing staff are great; however; his overall care leaves much to be desired, due to staff shortages in some cases, lack of empathy in others, or just waiting for the ‘turning team’ (next shift) before changing soiled clients. Small amounts of oral intake at times.
I am put through a training session to prove that I am capable of basic nursing care – I couldn’t help but see the irony of this considering the condition in which Kevin was found at times.
Home for 5 Weeks
We are sent home with no contacts for support and after being refused a transitional admission to
We can be sad when and if we want, laugh and cry together. We can hop into his bed and just be there with him. Sure it is hard, but not as hard as leaving him in the care of strangers. We can keep up his personal hygiene and maintain a regular routine for meds and feeds. Regular visits and lots of outdoor time, much needed peace and quiet. I am so tired with the uphill battle that I have given up on; I cry as I leave the hospital as I can’t believe the situation we have been pushed into, but honestly there is nothing else I can do – this is our best option at present.
Interacting well at times, watching TV and awake for longer periods, eating small amounts. One slight seizure following vomiting bug. All is going reasonably well until week 3½, with a slight deterioration developing and then increasing over the next 10 days. Unable to get hold of doctor; after 48 hours, look on net to gather info on hydrocephalus. I phone our local hospital on Saturday morning and that evening Kevin is transferred by Royal Flying Doctors from
Re-admission to RPH
Kev’s seventh lot of surgery; this is done on day 4 after re-admission to RPH Ward 5H. The night before surgery, Kev is really ill; however, he holds my hand tightly (and even tighter at
appropriate moments as I speak) when I talk to him about the surgery – I know he is in there and still remains to fight hard. Positive improvement after shunt, starts to verbalize a little and helps wash himself in the shower a little; slight movement in his right hand and leg begin. However, Kev has a 3-min seizure 5 days post-op. This takes a good 3 weeks to recover from and AEDs are commenced; these in themselves take 4–6 weeks for the initial side effects to ease (so I now know – the internet is a wonderful thing!).
Shenton Park
In
Complications at Shenton Park
E. coli urinary tract infection (UTI).
Difficult to get staff to give Kev fluids; tendency to put iced water down PEG tube entering directly into his abdomen (recommended tepid water for PEG); however, is drinking most fluids orally at home.
Developed post-traumatic amnesia (PTA), related to higher level of recovery; this leads to confusion, agitation, extreme restlessness and some aggression if pushed out of his comfort zone. This is not evident at home, but in hospital it is treated with medication, restraints and manhandling. Unbeknown to us, this had gone on for the last 2 weeks of his admission and we were informed of his agitation on 9/01/08 via the phone by the Registrar, who wanted to use chemical restraint. There were only 3 days per week when we were not able to be with Kevin at
were experiencing. I discussed the possibility of bringing Kev home until the medication for agitation kicked in, and said one of the family would be up in the evening and then again in the morning to be with Kev. I asked if Kev could be brought home a day earlier, on the Thursday (instead of coming up to Perth again on the Friday for weekend leave), which would save me an extra round trip of 5–6 hours and also give the meds a chance to take effect in an environment in which he was comfortable.
Steps Ahead
- Eating well.
- Enjoying weekend leave.
- Writes for the first time!! In a meeting with the OT mid-December, during discussion of how much Kev loves swimming, he spontaneously picked up a pen and wrote: ‘wgmes’. We tried to guess what it was with no luck, and he then wrote ‘wgsmgs’. The letters were jumbled and the vowels weren’t there, so at first we did not realise what he was writing and he put his head in his hands in apparent frustration. Later, when asked if he was writing ‘swimming’, his eyes lit up! (Later reading on the topic reveals that jumbled-up words with some letters missing is typical in cases such as Kev’s.)
- Increased awareness and communication, writing ‘Yes’, ‘No’ and ‘Good’ as appropriate answers to questions.
- Mobilizes in a limited fashion in a wheelchair.
- Changes from tilt-back heavy wheelchair to a more conventional and much lighter one.
- Weight-bearing, though not taking all of weight.
- Masters some continence.
- Shows general increase in cognitive skills and understanding, able to pick up correct objects at times, reacting to verbal prompts, initiating some activities.
Discharged Home: 14 January 2008
The girls brought Kevin home on Thursday 10/01/08 after going to visit their Dad and finding him in an extremely distressed state.
Girls took Kev for CT at RPH and then brought him home to Bunbury. The Registrar was very angry and demanded Kev’s immediate return to
KEV’S FIRST JOKE POST-TRAUMA! 11 January 2008
We arrive home and Thali says to her Dad, “Well, home for good out of prison, huh?” Kev actually gives a chuckle and is grinning from ear to ear!! He gives her a good thumbs-up and physically interacts with the girls – he is SOOOOO happy to be at home! Wow, this incredible, he has really come to life!!
Mr Smiley comes and sits with us in the kitchen and insists on getting out of the wheelchair and sitting in a chair in the dining room. Once settled, gets a goodbye hug from each of the four girls as they are going out for dinner together. He laps it up as each one of his girls gives him a smooch goodbye and chatters words of endearment to him. Kev then points to Kendie’s very pregnant belly and gestures to Renae, “How long?” Renae tells him it’s about 2 weeks until “Bruce” is due. A chortle starts deep within Kev’s throat that turns into laughter, with his body shaking and tears running down his face as he points to Kendie’s large breasts, gesturing ‘big’ with his hands.
I missed this and asked Kev what was so funny as the girls were full on laughing by now. Kev grabbed at his man boobs and then pointed to Kendie again. I cracked up and said “You don’t do that to me!” In reply, Kev got the girls’ attention and then twinked twice in the air at each of mine!! By now we were all in hysterics with tears running down our cheeks. This sounds like a small thing to lose it about, but this gesturing revealed a huge amount of awareness, humour and cognitive ability. After so much stress it was a huge release to share in a joke together. For a window of time the real Kev had surfaced – we can only hope that this will continue.
This is the first time we have all laughed together since The Accident.
Complications at Home
- Seizure to right side of body, lasting 3 mins. Extremely agitated and awake for 15 hours after the seizure (post-ictal stage) . Informed
- Juggle of meds, lots of trial and error; this lasts about 8 weeks.
- Hospital admission in early February because of total decrease in appetite, increased agitation, headaches and sleeping up to 20 hours per day.
- Foot drop develops more because of limited movement and reduction in weight-bearing.
- Develops a phobia to the bath and usually the shower.
- Continues to not tolerate having his teeth brushed, a development that has become steadily worse.
- Agitation continues to escalate (respiridone commenced), wanting to be on the move constantly, which sometimes entails 20 lifts per day. Most nights Kev sleeps well.
- Food and fluid intake remains inconsistent, so PEG must stay in situ.
- Still sleeping heaps – some days only awake for 4 or 5 hours, other days awake up to a max of 10. Whether this is due to meds, brain injury or just healing in general no-one is able to say, just “wait and see”.
Steps Ahead
- Becomes proficient at undoing the cot-side on the bed with his left foot.
- Enjoys aromatherapy spas for the first few weeks at home.
- Develops great skill and dexterity in mobilising his wheelchair, to the stage of being independent wheeling around the house and down the external ramps, at quite a speed at times!
- Assists more in activities of daily living, e.g. expert at shaving, eating with knife and fork, dressing upper body, reaching for objects in appropriate ways, assisting in making the bed and has even put pillow cases on with minimal help, will facilitate activities such as turning off lights, going for drives, shifting from one place to another.
- CT scan and all other tests performed while in
- Re-develops the skill of putting handbrake on and changing gears at the correct times (this using the once-paralysed right hand; in theory, this will use and strengthen the left side of the brain) – while I am driving!
- Initiates walking more and more, even though this starts out in a hunched-up, ape-like fashion as a result of months of bed rest.
- Shows increased awareness, with more ‘window periods’ where we get a glimpse of the whole Kevin.
- Definite shift towards communicating with small gestures.
- Physio started at home since Kev not coping within a hospital surrounding.
- Muscle wasting beginning to correct, then dramatic effects from Endura Opti, with muscle rebuilding.
- Kev becomes a grandad! Interacts well with Rubie by cuddling and kissing her when he is up to it.
- Regular acupuncture, homeopathy, Bach flowers and cranial osteopathy given.
- Ability to transfer actively increases hugely.
- Develops a great love for McDonalds! Not the best, but the skill of eating is maintained.
- Speech increases but not consistent: “How are you”, “See you”, “GO”, Hello”, ‘Hi there”, “Yes”, “No”.
- Regular outings with friends on a Friday commenced.
- Brushes the girls’ hair and is very affectionate at times.
- Able to go out for drives with family members.
- Increased social skills, sharing food (unfortunately this extends to the dogs if he does not want this food, and he has been known to feed them some dinner off his fork!).
- Right side strengthening more and more.
- Starts to “walk” wheelchair with his feet while sitting in it.
- With the assistance of just one person, able to get on massage table for the first time, for osteopathy.
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