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.

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 St John’s Ambulance.

Initial Injuries

1. Traumatic brain injury (TBI). Left temporal contusion, left temporal haematoma.
   
2. 0.5 cm left frontal haematoma.
   
3. 0.5 cm right temporal contusion, two right temporal haematomas, each 0.5 cm in size.
   
4. Traumatic subarachnoid haemorrhage.
   
5. Intraventricular haemorrhage.
   
6. Four subdural haematomas, approx. 0.5 cm each.
   
7. Diffuse axonal injury (microscopic-level brain cell disruption).
   
8. Brain partially herniated through base of right skull.
   
9. Left-sided cerebral infarction as a result of impact.
   

The above injuries are likened to shaken baby syndrome.

Other ‘Minor’ Injuries

1. Six fractured ribs.
   
2. Basal skull fracture.
   
3. Internal haemorrhage to left arm.
   
4. 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 Bunbury Regional Hospital. Therefore allied health (physiotherapy, occupational therapy and speech pathology) is slow to come on board and remains incomplete. I had to push for scripts for his medication as they were wheeling him from the ward, we were given no checklist of signs or symptoms to look out for that might indicate deterioration, and no appointments or scans/tests were booked. Able to take Kev home, which was a healthy choice to enable us all to grieve and adjust, and removed the ongoing hassle of being in hospital.

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 Bunbury Regional Hospital to Royal Perth Hospital (RPH) because of his worsened hydrocephalus.

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 Shenton Park rehabilitation unit for 8 weeks, minus 9 days over Xmas/New Year and every weekend (usually 3 nights) bar the first. Disappointed with the very limited availability of occupational therapy (OT) and speech therapy due to low client:staff ratio and the need to move more able patients on. The physios are fantastic, and general nursing care is great in the early part of stay.

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 Shenton Park and on these days I phoned once or twice daily; however, neither during these phone calls nor at any other time was I informed of the increased agitation and the difficulties staff 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. A CT scan and blood tests were ordered. All Kev wanted to do was escape, and he made a bee-line for Kendie’s car once he was in the car park. The girls were traumatised by what they saw and the way Kev was manhandled and forced to conform with staff wishes, including being forced to his bedside in the ward, and by unsuccessful attempts to insert an IV cannula; Kevin was very distressed but was not managed compassionately.

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 Shenton Park, even though he knew it’s a 3-hour drive. I took Kevin back up the next day and returned again for his weekend leave that afternoon. Kevin was so agitated at the hospital that after discussions with staff on Friday and a staff meeting on Monday, the consultant said that it was probably better for Kevin to be discharged, with a view to readmitting him at a later date.

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 Shenton Park, but no advice given, so left to wing it at home as I felt an ambulance trip would totally blow him away.
  
• 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 Bunbury Regional Hospital reported NAD (no abnormalities detected).
  
• 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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