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.