Bugger! Infection and Hospital

The past few weeks have gone pear shaped to say the least.

I got sick in the outback while driving back from a trip to Victoria and by the time I made it to the Royal Darwin Hospital they told me the skin and tissue around my bum was infected and needed to be cut out.

Waking up from surgery they told me they’re had to remove part of my rectum and some tissue… but it got worse… two days later I was back in theatre and more was cut out… the next day I was informed that if the infection continued to spread I’d need to have my legs amputated. I seriously thought I was a gonner.

We had family and our church and beyond praying for me and in the next surgery the doctors were blown away that the infection had stopped! I’m calling that one a miracle. Still, I’d had my rectum, anus, and lots of tissue, muscle, and skin removed in an area measuring 14x14x9cm over my bottom and extending down my left thigh.

It hasn’t been an easy road since then. Having a C5/6 spinal cord injury means when my body experiences pain it throws me into Autonomic Dysreflexia - in basic terms I start to drip sweat and my blood pressure goes haywire - my body systems go into overdrive and it’s super dangerous. There’s been a LOT of that happening despite maxing out pain meds.

Royal Darwin Hospital was fantastic but the plastics team felt like the reconstruction surgeries were beyond them so I fought for a transfer to the Austin Hospital in Melbourne. I’m now in the Spinal Ward which has made a world of difference as they ‘get’ SCI, just yesterday one of the nurses saved me from a bad AD episode.

The plan at this stage is to let my wound start to heal - that requires 3 packing/dressing changes per day which are bloody awful - but at least I don’t need to go into theatre each time as I did in Darwin. It’s important that all traces of the infection have gone before the reconstructive surgeries begin. They’ve still got me on powerful antibiotics and on infectious diseases control as they work to identify the specific bug I have.

The main stress for me during this time is seeing the impact of my wife Jess and daughter Eleven. It rips me apart to see how hard it is on them. We’re in the process of getting them settled somewhere for the next couple of months here in Melbourne. Thankfully my beautiful adult daughter Courtney lives here and has been a generous hostess while they find something a little more permanent and it’s been heart warming seeing photos of her and Eleven together.

Then I’m already planning to get an apartment for all of us when I’m able to be discharged (hopefully early in the new year). Although I’ll be on bedrest still and likely need to go back to the Austin three times a week for dressing changes, I desperately want to get back to family life ‘as usual’.

Money. We both have lost our incomes. Our emergency fund has already been depleted. Although there is a small amount of financial support available it will be nowhere near enough to pay for an apartment in Melbourne that is close enough to the Austin for regular trips back but also has a good view (because I need to see out - I’ve already had enough of staring at plaster walls!) We still have mortgage payments to make and all those usual day-to-day expenses.

It’s not my usual thing to ask for help. The fact I agreed to let my sister Karen set up a Go Fund Me campaign is surprising to me… but as she pointed out… how else am I going to raise the funds to pay for my family to stay with me for the next 9-12 months? Having them around is the only thing giving me any sort of joy and strength right now.

So as much as it pains me to ask, I’m asking… please help me to keep my family together. If you are not in a position to give please share with your networks www.gofundme.com/f/eleven-needs-her-dad

A massive thankyou to all who have already supported the campaign. It’s truly blown me away and given me so much hope for the future.

Keep up the prayers and messages of support, they give me strength. I’m not up for visitors just yet, and likely won’t be for a few more weeks but I hope to touch base a bit on here and social media.

Time flies with a Toddler

It’s been a while between posts, 2 years in fact. Our little girl Eleven is now speeding towards turning 3 and it’s safe to say it’s been quite a busy time.

The most important event in that time would have to be our wedding in New Zealand in December last year. That trip wasn’t uneventful as far as accessiblity went, kicking off with getting stranded at Wellington airport in the wee hours of the morning with no wheelchair taxis on duty. This was a bit of an eye opener for my sister Karen who hadn’t traveled with me before. I ended up in a patient transfer van with the ambulance service, and Eleven got to ride in an ambulance with her aunty.

We traveled across the straight once again on the ferry as the wedding was to be held on the beach at Whenuanui Bay in the Marlborough Sounds which is where Jess’s family own a very special ‘bach’ or holiday home that’s been passed down through the generations. We kept it small and just had a couple of my closest family members - my sister and my adult daughter Courtney, and Jess’s immediate family, aunties and uncles.

Jess came walking down the beach with her Mum and Dad and holding Eleven who got the swing of throwing the rose petals as they walked. My sister Karen did the bulk of the food, with her background in catering she did an incredible job and we had a spectacular lunchtime picnic. It was truly a magical day for us.

Although we were unable to stay at the bach due to there being no accessible bathroom, we had a great unit with an incredible view over the water in Waikawa, a 20 minute drive away. We had a few hiccups in registering a car that I’d shipped from Melbourne so we instead had to hire a car in Wellington - which then had a ceiling that was too low for me to travel in comfortably.

We enjoyed Eleven’s 2nd birthday with my family in Caloundra, again renting our favourite unit at La Promenade overlooking the river.

Back here in Darwin I’ve been busy finishing up a Cert IV in Community Services at Charles Darwin University, giving school talks with NDS re life with disability and encouraging kids to think about the disability sector for a career pathway, and working to establish some more supports here depending on getting some funding.

I’ve also been volunteering with a local disability advocacy organisation called IDA, and even found myself a board member. I’ve currently got my fingers crossed for some funding to be approved so we can have more impact here in the NT.

In other news… I’ve modeled in a fashion show, been fixing up a 1963 Combi Van, found a regular Saturday market job looking after the bouncy castle, and kept improving the house and section.

Jess has been back at uni studying Visual Arts and is enjoying getting involved with the arts community here slowly and is particularly impressed with me at the moment as I just helped her create a studio space here at home.

I’m hoping to do a bit more of this blogging thing, so let me know what you want to know about…

The Epic Road Trip v2

We've packed up once again and hit the road. This time with a 9 month old baby. We underestimated how much extra luggage would be required! Oh and Jess's father Willie is tagging along this time. Add the dog into the equation and we're a full house in the Chrysler and the 6x4 trailer is chockablock.

2017 has been a big year. We've had the usual crew up to help with renos over the dry, including our now proud-as-punch Tigers fan Jonesy. The property is looking amazing, just gotta pray the house doesn't turn to a mould-fest while we're away over the wet season.

Big George our labourer took off a few weeks back and has set up shop in Yeppoon, our first destination in Queensland (after the compulsory overnighters on the way over). Have missed having my 'hands and feet' around but now Willie is stepping up to the mark for the next few weeks.

Jess has been getting back into her drawing and is currently working on a portrait of my late brother-in-law that I'm excited to give to my sister next week. 

Before we left home I made a new seat for Eleven to go onto the front of my wheelchair with parts from a pram toddler seat stand attachment.  People love it, it's amazing how many conversations it's started.

We reached the Queensland coast a couple of weeks back, we stayed a few days at a caravan park just out of Yeppoon, then in a cabin on the beach at Agnes Water, and now we're in an apartment just down from the beach in Hervey Bay. 

We are winding down and loving our time together as a family. It's good to get out on the beach with the wind on the face, getting sand in everything, and I'm really enjoying fanging with Eleven on my lap or in her seat up front.

As I did last time I've stopped in at a couple of Men's Sheds. They've come to my rescue here in Hervey Bay with making some ramps to make our apartment (safely) accessible for me - a big improvement on the improvised paver tile ramps we initially had. 

Roadside picnics

Wind got my hat!

Got a push through soft sand

As we travel I'm planning on catching up with a few bennies along the way as we head south to Tasmania (Boof we're looking forward to some amazing smoked meat) via Brisbane (Cory hope to see you real soon), Canberra (Scottie B will hopefully show us around), and Melbourne (another Echuca local is at the rehab) with a trip out to Geelong (Mark from Geelong who's wanting to modify his excavator). Then onto Rendelsham in SA (Seagull has made his holiday home accessible for me so we get to test it out), Millicent (Speedie have you got that room set up for me yet?!) and back home to Darwin eventually – some time next year.

A fellow Darwin benny Alan sadly passed away recently following a battle with a superbug, our love goes out to his friends and family.  

Destination Darwin

We have arrived at our destination; our new home in Darwin! Yep we made it.

Leaving Adelaide we traveled along the Flinders Ranges on our way to our first stop Port Augusta. We stayed at the Shoreline caravan park, Jes thought the cabin was dated but it suited my needs.  The interest the croc  is attracting is amazing with one fella wanting to buy it.

This croc surely has made us the most photographed vehicle on the Stuart Highway in 2016

Up early and 600kms to travel to our next stay Coober Pedy, it's a pretty barren drive but we stop at Pimba and Glendambo and start our sticker collection for my toy hauler I'm towing up. Coober Pedy is a real example of anti social behavior in and around town going out of a night is not an option. We stay at a cabin at the Big 4 caravan park (Stuart Ranges Outback Resort) a little out of town and is a grouse place to stay with a little band playing away at the pizza bar next to reception. Refreshed from a good nights sleep and more travel today we head into town for the morning market, after chatting to many different characters it was sadly time to hit the road..

The Stuart Highway sticker haul on the toy hauler

Another 600 kms today as we head for Alice Springs with Marla and kulgera stop at it is a pretty easy drive apart from the road trains and caravaners everywhere. It's Saturday night and Jess has been great so we decide to unwind with a couple of nights at the casino and relax and sit around the pool jess or gambling macca. It's a very luxurious place and is just what we need.

Monday morning we head for Tennant Creek traveling the Stuart Highway the countryside is stunning  as it changes all the time, we stop at Ti Tree, Barrow creek , Wycliffe Well and Wauchope for coffee and stickers and arrive at the motel about 5pm. We have tea at the restaurant and get a good nights sleep. We head into town and meet a few fellas and one particular bloke had me in tears as he told me the struggles of isolated life and his time in the war and how some locals treat him and three other diggers - a fair dinkum tear jerker. I had a couple of frozen crayfish with me and gave them for him and his mates to enjoy.

Crays caught in South Australia that made their way to an old digger in Tennant Creek

Daly Waters here we come - 400 kms until I can have a beer at the oldest pub in Australia. We collect stickers at Renner springs, Elliott, Dunmarra to name a few.  Temperatures have changed dramatically since Coober Pedy 18 degrees to Daly Waters 33 degrees, ah feeling better already. We book at the Highway Inn and enjoy the night.

Darwin and our new home at Howard springs are 600kms away it's a very easy drive with Mataranka and Katherine to enjoy with rivers flowing because of recent rains.

Although we did have our new toy hauler with us, it was so jam-packed with stuff and it was first of all too cold, then too hot and we don't have air con or heaters sorted in there yet, so we opted to find accommodation along the way. Below is a few pics of places we stayed, reviews on these to come.

My initiation into Darwin life has been one of going shirtless and shoe-less, and pouring water over my head in attempts to prevent myself from overheating (quads have no body temperature regulation).

Jess has also been struggling to adjust to the heat but her real initiation has involved the wildlife in her nightly trips out to the outdoor bathroom. This morning the squeals were due to a giant grasshopper perching on the shower curtain (a google search just showed this is actually a thing) and a green tree frog hiding under, and then refusing to get off the toilet seat.

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There's going to be steep learning curve I think in terms of life in the tropical north. We just learnt today there's a scary disease you can catch from mossie bites... any other stuff we should know fellow Territorians?!

We've spent our first few days cleaning, unpacking, buying up furniture and home stuff, and exploring the neighbourhood... and we'll likely remain busy doing all of that for a few weeks as well as tidying up the property and house improvements... luckily I love to work myself hard, and Jess is a goer too, when not snoozing the afternoon away!

The plan at this stage is to spend the next few months in Darwin, and see how we go in the wet season, with perhaps a trip south in the new year. Let us know if you're coming up for a break, and tell any locals WE HAVE ARRIVED!

Me Ol' Mate Jamie - 20 years on

I recently had the pleasure of spending some quality time with me ol' mate and his family in his home town of Launceston... we met in the spinal rehab 20 years ago... but here I'll let him tell his own story:

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My typical day starts about 6 am rising up out of bed ready for a days work on a construction site as a carpenter, pushing my body and brain to the best of its capabilities like any 22 year old healthy male's body is designed for. On weekdays after work depending on what day of the week or what time of the year it is, I would do what most guys would do which was hang out with mates, and have a drink at the pub after work meet my girlfriend or depending on the time of year during summer cricket training, during winter boxing and running. Weekends play or watch sport, mow my lawns and my father's as he relies on me as he is older now an unable to or take my dog for a walk go fishing.

A simple but happy every day life, not complicated but what I felt was the life for me. Many other people would probably agree - a job, steady income, girlfriend, mans best friend a dog, mates, a roof over my head, and fantastic health - it seems perfect life on track really AND THEN THAT'S WHEN IT HAPPENED.

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Let me introduce myself my name is Jamie Kelly from Tasmania, and on the 29th of October 1995 at the age of 22 I became part of a group that I knew nothing about, that is a spinal cord injury (SCI) or in my case a T-6 Complete paraplegic. I woke up not knowing where I was or what was going on and very groggy not being able to move to be told eventually when I could understand things that I was involved in a motor bike accident and have broken my back and would be staying in Melbourne for 6 months or more for rehabilitation at the Royal Talbot along with other injuries such as loss of sight in my right eye, breakayl plexus in my right arm, jaw rewired with missing teeth a loss of over 20 kilos a trachy in so I cannot even communicate back to ask questions all I can do is listen as a doctor just keeps telling me what is in store for me. Face reconstruction when I saw myself in the mirror I could hardly believe the reflection to see that I was actually looking at myself and not someone else.

When I was told my back was broken I knew that meant I could not walk again, which a lot of people knew from common sense or word of mouth about that injury - but was I shocked to find out the other symptoms that go along with a SCI such as no feeling from level of break, spasms, hyperreflexia (also known as autonomic dysreflexia), loss of bowel and bladder control, bladder infections, pressure sores, and if that wasn't enough then the rush of other things started to enter my thoughts like where am I going to live? My place is not wheelchair accessible it has stairs, a bath, tight corridors and there goes sport and what about an income because there goes my job.  Will I be able to drive again? What world am I living in now, can I cope and am I strong enough to do this? Have I really got friends or people just hanging around and relationship wow that's friggin scary to even think about, and can I still have kids? So many questions and things to organise and yet I'm supposed to concentrate on getting healthy and strong again just to sit up so I can start rehab.

Well you too may have these thoughts and the answer is yes you can have these things and after rehabilitation you can adapt and continue on. I'm now 41 and married from a new relationship since my accident with children and yes we can learn to drive with hand controls. You will find your friends will stand by you and help when needed after all that's why you can call them your friend.

You will learn to LIVE in a different way but it's still worth living so don't give up, it's just a new chapter to your life.

Like any injury it will test your spirit and who you are as a person, but at the end of the day you are still you - just not walking - so keep on "fighting" for you and your family.

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