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…