16th Dec 2015
From daily challenges to triumphs, messages of thanks and some Christmas cheer, Maciu and Kylie’s incredible will, spirit and determination shine through in this update from Kylie in the lead up to Maciu returning home before Christmas.
It's been a busy few weeks for us all!
We've spent quite some time over the last few weeks looking at different care agencies who will supply disability care workers to help with caring for Maciu in our home. We really appreciate Ruhan van Zyl making himself available to interview the agency reps with us and make sure the right questions were asked!
There was a bit of a hiccup with the care agency we selected which resulted in a few stressful days and conversations, but I believe everyone is now on the same page and carers are working with the Royal Talbot team, learning Maciu's care needs and routine so they know exactly what is required when he returns home.
Maciu had a community access day at Doncaster Shoppingtown last week to do his Christmas shopping!! Some very special Harlequins passed the hat around at their AGM and their "Friday Lunch" last week and ensured a nice BIG gift was purchased for the Vosa family. It was great Maciu had the chance to go to the shops and pick it out himself too! Getting around JB Hi-Fi in a wheelchair was a challenge but one Maciu was able to accomplish well.
I think everybody will be happy with the gaming console and games we purchased! It will help Maciu with his moving arms therapy, Ezekia and Ariella will be thrilled to be able to play games together with Daddy and Mummy is looking forward to everybody being occupied long enough for her to put her feet up and finish a cup of tea uninterrupted: haha!
It was great that Maciu got the chance to eat out that day too. After setting his meal on a tray and inserting his fork into his Velcro "Palm-pocket" for him, Maciu managed to feed himself unassisted in the food court: a real achievement and something we all take for granted!
Maciu had his final goal planning meeting with his rehab team last Thursday, where everything relating to his discharge was planned. Maciu took full advantage of having his spinal specialist, registrar, occupational therapist, physiotherapist, social worker and primary nurse in the one room – a rare event! He made a speech thanking them for all their support over the last nine months and spoke of how happy he is with his progress so far: a few of the girls even teared up.
When Maciu was first admitted to the ICU in March this year, lying on a gurney and unable to move, the first people he came into contact with were Dr Nunn (his spinal specialist) and Sanna (his physiotherapist). Sanna had her work cut out for her just turning him over and performing chest therapy on him to help him cough and clear his chest. He had some sensation in his arms but was unable to move them or his head for that matter: he couldn't even speak for the first nine days. Over the next nine months, Dr Nunn, Sanna and the rest of the team have worked with Maciu daily in occupational therapy, physiotherapy, weights and nursing to get him back on track and make the best of what functionality he has been able to regain.
This core team, combined with social work, chaplaincy, peer support and dietitians have worked together to treat his mind, body and soul. We're so proud of all he has achieved so far and his outlook and attitude have remained positive throughout.
Over the months he has developed a chest therapy treatment involving ‘breath stacking’ with his physios which he has followed strictly twice daily. This ensures his chest remains clear and free of any infections and he managed to stay "admission free" from the Austin for the entire winter!
Maciu has worked hard to regain good functionality in his right arm and wrist. He enjoys regular gym workouts, lifting hand weights to strengthen his muscles with specially adapted mitts, and regular Wii gaming sessions having a hit of tennis. He can still beat us all, I might add, even with limited arm function! His physio often remarks "once an athlete, always an athlete".
Although he has no functionality in his fingers, he is able to feed himself, hold a stylus and operate his phone and computer. He's slowly getting a wider range of movement in his left arm and is happy with his progress especially over the last few weeks. Steroid injections in his shoulder have helped with pain management, and doctors are investigating whether the numb, pins and needles feeling in his wrist and hand could in fact be carpel tunnel, although even if confirmed they are unsure just as yet how they would treat it at this point in time.
The nerve surgery proposed on Maciu's right arm is still being discussed. He is required to attend a couple more clinics, so surgeons and therapists can continue to monitor and test which nerves are in fact working and he can pretty much decide when the best time would be to for him to undergo the surgery. At this stage he would like to come home for a while first, and perhaps have the surgery next winter. It would require a few weeks in splints and a good couple of years for transplanted nerves to grow and finger function become possible.
Maciu’s also improved greatly in directing his own care now; so those helping him know exactly what and how to do it. As many of you know he's a man of few words, so it's been no mean feat!
Our house modifications are coming along nicely. The ceiling hoist is in, flooring has been laid, everything can now be fitted off. The climate control system and shower curtain are among the last few things to go in and we are on track to complete them at the start of next week: all ready for the care agency's OH&S check! Simon from Stocklands has been our Project Manager and has done a fantastic job co-ordinating everyone and everything: we can't thank him enough!
The ever reliable Pete Dawson has taken care of the lawns (and many other things behind the scenes) for which we are eternally grateful. I have what feels like a million and one things to purchase and organise to ensure a smooth transition for Maciu's much anticipated home coming. It will be this week assuming everything goes to plan!
The Vosa family would like to extend a huge thank you to our wonderful Harlequin family and the many other supporters who have rallied around us for your unwavering support this year. It has been reassuring to know the club has been right there with us every step of the way and we are so thankful for the #4Matty committee members for all their time and hard work.
Our heartfelt thanks go in particular to those very special people who have dropped in over the last couple of weeks to wish us a Merry Christmas, check Maciu's progress and who have generously brought in or sent some thoughtful gifts for us. We certainly are very spoilt!
We wish you all a wonderful Christmas and a safe, happy and healthy 2016. We look forward to updating you all soon on how things are progressing for Maciu at home.