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Art’s spinal tumour (Chondrosarcoma)

  • July update     11 July 2020
    Posted by: Rachel Rogers
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    Hi, to all the wonderful people who have been so supportive throughout our ordeal to this point. Art's Rehabilitation programme is full on, five days a week and goes from 9am until 4pm Monday to Friday. Everything they do at the unit is preparing them for life post Spinal injury or medical event. They learn new skills to make them as independent as possible for life outside of this awesome facility. They have electric wheelchair manoeuvring lessons and they go out into the community, learn how to cross busy roads and looking out for obstacles.

    Because Art is so busy during the day, I checked out the possibility of getting some relieving up here and it has worked out so well. I have been working most days at a centre close by, it is a small centre and the teachers are lovely. I finish work no later than 4pm and I head out to see Art, get home around 6.30 ready for tea and bed.

    Art is learning how to turn himself to prevent bedsores. He is practicing getting in and out of a car. He has Hand Classes which involves massaging but also making different items for his dexterity. He enjoys these classes but he has fallen asleep, some things do not change! LOL. He is able to get from his wheelchair to his bed with the aid of equipment that supports him to stand from his chair and a seat is attached for him to sit on his bed, from there he must bring his own legs up onto the bed. His left leg feels like a heavy weight, and has to be lifted manually. During lockdown, when Art became less and less able to walk, he started using a walking stick but had to get a walker and it wasn't long before he was falling over using the walker. I noticed that his left foot was curling in, this is now a real problem as his foot is twisted so putting weight on it is very painful. Unless they can get the foot to be flat he will not be able to walk. It has not shown much improvement with all the therapy. They are working hard to correct it with massage and moon boot type support but has splints open at the sides. They are painful to wear and were keeping him awake at night, so the latest is that he wears them for two hours during the day. They will slowly increase the time he is in them.

    We had a family meeting with all the people working with Art, Rachel was with me and James was on the phone listening in and asking questions. Art was able to have his say and it was lovely to see the close relationships he has built with the Physios and Occupational Therapists. The nursing team are working on his bladder and bowel issues, the feeling in this area is beginning to come back, the nerves feels like someone is poking him with pins. He is now waiting for a more permanent catheter point to be inserted just below his belly button. This involves an operation which is done at Auckland Hospital, he is on the list and they are aware of his situation. We are hoping that he will have this done before he leaves the Spinal Unit.

    Even with all his progress they expect that he will be in a wheelchair for quite some time and he will need a hospital bed. They have checked out our house and have suggested that he use the formal lounge as his room, I too had thought that might be the best way. He won't be using a bathroom; he will have to have sponge baths in this setting..... I don't know what I was expecting but it wasn't that. There are still a lot of unknowns for us to work through. When he leaves the Unit, he will go back to Rotorua Hospital to the rehabilitation ward to get more treatment before he comes home. The good thing about that is that he will be able to have more visitors. He will love that!

    Thank you, Thank you, Thank you to each and every one. We love you all.

    God Bless you

    Art, Margaret and family 💕💕

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  • End of May Update on Art's Progress     27 May 2020
    Posted by: Rachel Rogers
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    A Big Thank you to everyone who has contributed to Art’s ‘Givealittle page’.

    Art spent 3 weeks at Middlemore Hospital in Auckland; he had some concerning blood clots in his legs and then in his lungs that developed following the operation. The clots were treated with intravenous Heparin for about a week.

    Art started physio in the second week. Just sitting up was exhausting, but he slowly progressed to sitting up to eat and then moving to the edge of the bed to standing for very brief moments. He has some boots similar to Moon boots, which he wears to stand in. He progressed to being able to stand for two minutes, five times. He found this very hard and he called the physiotherapists the torturers! He spent some short stints in a hospital wheel chair but he

    found it very uncomfortable to sit in.

    He has now moved to the Auckland Spinal Rehabilitation Unit. He was very anxious about this

    move, but he likes it now. The food is good and the Team who look after him are awesome. His first morning there they told him he was going to have a shower and he was a bit concerned about the moving he would have to do. They brought a shower bed and moved him onto it and he thought that was pretty good, his first shower in over 3 weeks. Since then he has progressed to a sitting shower which he looks forward to each day.

    The Rehab unit has lots of toys that Art will get to experience. He has an electric wheel chair that is so much more comfortable than the hospital one. It is well padded for spinal patients. He has got the hang of it and spends about two hour stints in it each day. He still gets tired especially after his physio sessions and time in the wheel chair. He sleeps a lot.

    Art has developed some spasms in his arms and hands which make it very hard to use his phone. The Team will be working on this as not being able to use his hands would be devastating for him.

    Art is missing the contact with people, now he is having trouble answering the phone, maybe anyone who wants to, could send him some snail mail. The address is:

    Auckland Spinal Rehabilitation Unit

    Private Bag 93319

    Otahuhu 1640

    Auckland

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