It’s 2017 and almost a full year since the last update.Wow – time has flown, and so has Matthew…
I’ll get back to that.
Primarily, 2016 was a year of refinement and surgery. Matthew has continued to make progress with his prosthetics albeit more painstakingly slowly than he would have ever imagined. First, he had cataract surgery on his right eye. The cataract formed as a result of his retina detaching, and that had been caused by his initial infection in 2012. A bonus for having his cataract removed is improved long distance vision, so he has no more need for glasses! After four years, he has finally been given the all clear by his ophthalmologist (a big yay).
Matthew had to return to the USA mid-year for more work on his arms. His prosthetist in Melbourne put together a new elbow/wrist. Matthew took this to Chicago to install the pattern recognition software (see COAPT Engineering) and connect to a new set of sensors/cuff on his arm. It didn’t quite go to plan – Matthew is the only patient they have had (and only one of two in the world that we know of) that has both osseointegration in the arms and targeted muscle renovation. This means that the muscles in his arm are quite active as the bone is carrying the arm’s weight. This creates a lot of background EMG signals that the pattern recognition software has to deal with. This meant that they had to trial an initial electrode placement and then totally redesign the cuff (which holds the electrodes).
After redesigning the cuff and fixing some wiring issues, the hardware was as good as it was going to get so Matthew then had to learn to drive the arms. He was able to get reasonable control but there was quite a bit of unreliability due to the weak signals in his newly innovated muscles. After quite a bit of troubleshooting – a trip to ultrasound scanning and then the surgeon – the recommendation was to remove some more soft tissue overlying the muscles so that the sensors could pick up the EMG signals in his muscles more easily. The amazing team and facility in Chicago made the trip worthwhile – great thanks to Kristi Turner, Laura Miller, Dr Todd Kuiken and the entire team at the Rehabilitation Institute of Chicago.
Following his return from Chicago, Matthew travelled to Melbourne to discuss the issues and get some more scans with the OPRA team which resulted in the planning of two more surgeries. The first surgery in August was to investigate pain associated with the implant in his right leg and to undertake revision surgery (nip and tuck of excess tissue) on the leg. The investigation of his right leg revealed issues with the abutment (the bolt that screws into the implant that is inside the bone). This had created some metal burrs on the inside of the implant in the titanium. The second surgery a few weeks later was another nip and tuck, and involved removal of the soft tissue on his arms. This meant Matthew was unable to wear arms or legs for some time, and there was a lot of quiet time for a few months.
After finally healing from the surgeries it was time to try the new arms again, but this time there were gremlins in the electronics. Matthew is still waiting for a solution, so while he waits, his trusty locking elbow set are working well.
It took Matthew and the family a while to readjust as he had hoped the trip to Chicago was the end of the current phase of medical/prosthetic changes. He was looking forward to moving on with some new opportunities, but as much of the year was spent in recovery/adjustment mode, he focused on 2017 being the ‘move forward’ year.
Never one to sit and do nothing, Matthew completed his company director’s course and was appointed to the board of Hear and Say, a not-for-profit organisation that’s close to his heart. Matthew will have to have a cochlear implant in his left ear in the near future as he has lost significant hearing as a result of the disease/antibiotics and there is a chance he will lose all of his hearing. While he can hear, he will have an implant to ensure he retains some sense of hearing if he does in fact go completely deaf. He had planned to have the surgery last year, but delayed that due to the other issues with his arms and legs.
He progressed with an order for a car for him to drive. It has arrived in Melbourne and is currently being modified (Capital Special Vehicles). He also placed an order for an off-road recumbent mountain bike that can be fully electrically powered (see Outrider USA). Matthew’s ability to explore these options for independence are only possible through the support provided by donations to the Renovating Matthew Foundation, so his and our gratitude remains profound.
Some other great stuff also happened. Matthew got out and about conducting talks, and worked actively as an ambassador for the Queensland-based antimicrobial drug resistance group Community for Open Anti-microbial Drug Discovery. He also had the opportunity to do work with Origin Energy earlier in the year, and dipped his toe (ha ha ha) into the life of a lecturer by giving a lecture to budding engineers at the University of Queensland.
On the family side, Diane surprised Matthew with an indoor skydiving session for his birthday (see above photo). He says it was terrifying but extremely liberating for the short time he was in the air. The support he had from the staff at iFly Gold Coast was amazing, and all the boys also had a turn.
Later in the year, Matthew and the family attempted their first ever ‘road trip’ from Brisbane to Canberra. Extensive planning went in to identifying wheelchair friendly accommodation along the road, and Diane was directed by five passenger drivers and map-readers along the road. Highlights of the trip included a visit to Parliament House, and a spin on a zipline, where Matthew’s arms provide a unique method of balance.
The trip also included a visit to Taronga Western Plains Zoo, where Matthew was able to feed-kiss a giraffe…
The end of the year came with a ‘super-high’. Having been rejected as too high need for an assistance dog, the children had been promised a family puppy when ‘things settled down’. Christmas 2016 was that point. A stealth operation coordinated between Matthew, Diane and our sister Rachel resulted in the arrival of Teddy, a cavoodle puppy, on Christmas eve. To say that the kids were excited is beyond an understatement. He is the source of much love and enjoyment (as well as work in puppy training) for everyone. He spends very little time on the ground.
What were his main lessons from 2016?
That too many scans make you radioactive when you’re trying to get into the USA through an x-ray machine.
That progress is slow, and patience remains a virtue.
That there is still so much we don’t know about sepsis and the way the body works.
But mostly, that making the most of what you’ve got keeps the glass half full when there’s barely a drop left on a bad day.
Until next time!