Nursing staff and doctors were amazed that his family came every day to visit him in the hospital. I was there for hours each day. Joe frequently came in his lunch-hour or did his work online beside Jonathan’s bed. Bella, a teacher, came after school when she could, and my husband was there as often as possible. Anna kept up to date with video calls. She lived nearly eight hours’ drive away.

No one else in the ward had as many visitors. The nurses told us that Jonathan was their favourite patient. He never moaned or complained as other patients frequently did.

There was meant to be a worker from the disability service with him at all times. This was initially the case – until two went on maternity leave, one on paternity leave, and others contracted Covid. If there was no caregiver, it meant that if Jonathan had any problems when one of us was not present, there was no one to ring for a nurse or press the Medical Alert alarm. No one, then, to remind the nurses to turn him every two hours, and to help them do it without causing him pain. No advocate.

Another client from his Group Home was hospitalised shortly after Jonathan. Group Home staff then had to divide their time between the two patients, unless one of our family was there to care for Jonathan.

Believe it or not, shortly after that client was discharged, a young woman from the home next door to Jonathan was admitted.

This new patient was none other than Suzy who had been in my class during the two years I taught at the school for deaf and blind children so many years ago. Suzy, with the blue eyes and blond plaits, Suzy who had been shaken violently as a baby until her brain came loose …. Suzy was now living in the Group Home next door. I wondered what her experiences had been during her own difficult life journey. Suzy is very unwell, and her prognosis is not good. Such a sad situation.

A couple of strange incidents occurred. At one point, the Group Home worker who was present with Jonathan noted that his oxygen had been turned down to zero. Had the knob been bumped when Jonathan was being repositioned? Another time my husband realised the oxygen pump was not working because of a kink in the tube. There was no explanation for either situation.

Did someone feel that he would be better off dead? Either of these incidents could have caused him to die. Both times someone noticed. Yet all the staff always showed him respect and great care, with the exception of one nurse on one shift. These issues were never resolved.

Twice, a Group Home worker had to press the Medical Alert alarm as his breathing deteriorated. Within minutes, six doctors were present and gave the emergency treatment he needed. No longer did I feel that he was being treated as a second-class patient because of his many disabilities. The medical staff all realised that this young man was much loved. They gave him the best care they could.

It was during this distressing time through conversing with the caregivers at his bedside that we found out about some significant changes within the disability service …. We realised that most of the staff from the Group Home were relatively new. Very caring, and capable. But new!

We were to find out more, down the track.

Jonathan remained critically ill, and this was now the fourth week. The doctors were still confused about the infection. The question was whether or not to drain the fluid, even if just from one lung. The fluid in his lungs had increased to a dangerous level. He was unable to breathe well, even with maximum high-flow oxygen.

Jonathan would have to have the procedure to drain his lungs while lying on his side, under local anaesthetic – if they went ahead – and he must not move. He would not survive full anaesthesia. Each day they had been changing their minds about whether to go ahead and try or not. The lungs were more than three-quarters full of fluid. He was dying.

Finally, they decided to go ahead, early in the fourth week. I signed the authorisation. The medical staff made no promises as to his survival; for him the procedure was risky, and they were worried.

Our son Joe had had a spontaneous lung collapse when he was in his early twenties. He knew from having his own lung drained several times, how painful the procedure was. He’d needed morphine for the intense pain. Jonathan could not be given morphine.

The surgeon wanted to drain Jonathan’s left lung, which was fuller. The surgical team of five would operate in his room, bringing all their equipment and machines. He was not well enough to be transported to the operating theatre.

Joe and I were asked to hold him still while they inserted the drain.

The procedure to insert a drain into a lung normally took half an hour. Just before he began, the surgeon changed his mind. He had a portable device to scan Jonathan’s chest and he felt there was too little space to insert a drain – the left lung was too full of fluid, and the needle could pierce his heart. The surgeon decided to drain the right lung instead.

They started over. Jonathan was repositioned. An hour later the right lung drain was in.

Joe and I had held him still, and kept him steady despite his flinching at times as his flesh was cut. I played soft music on my phone near his ear. We both murmured encouragement to him. He made it. He’d always been tough.

Within a few days, more than two litres of fluid had drained from his right lung. A huge quantity for someone whose frame was slight. His breathing improved, and he was no longer on maximum oxygen. Progress. The surgeon and medical staff were pleased at how well he had coped. We were relieved.

Anna arrived from her country town. She was pleased to see that he had some relief already. It was good to see her. She had obtained leave from work and had left her toddler with her husband – in order to see Jonathan.

I thanked Joe for coming each day. If he hadn’t visited through the day, he would visit at night after he put his little girls to bed. “Mum,” he replied, “If I was in hospital, I would want my family coming every day.” He always referred to Jonathan as his brother. I was pleased that this was still so, after all these years.

Bella, too, had been a source of comfort, strength, and encouragement to me. She had three children to care for, but still visited very regularly, and she was always very perceptive as to how Jonathan was feeling.

Another thing which pleased me was the way Jonathan always turned to me when I arrived at his bedside. Despite his poor vision he knew I was with him. He did not need to verbalise his love – that was how he showed it. He seemed to find comfort and reassurance from my being there.

He always reached out with his left hand for me, and I would hold his hand, bruised badly from where cannulas had been inserted. With his fine veins this was always a difficult process, and they always needed a portable ultrasound machine to locate his veins. The same for the daily blood tests he’d endured. He was bruised everywhere.

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Three days later they decided to drain his left lung as well. A big decision. It was riskier, we all knew. Joe and I were again requested by the surgeons to hold Jonathan still. We were reminded that the needle could pierce his heart if he moved, and there was very little space. His blood pressure, always low, started to drop, alarmingly.

“Keep an eye on that!” the surgeon said softly to his assistant, nodding towards the blood pressure machine. I also turned to the machine and was horrified to see that his blood pressure had dropped to 67 over 46. Dangerously low. No, I was not a medical person, as I had often been reminded by that previous CEO and his so-called Health Care Team, but I knew what this meant.

Gradually, ever so slowly, the corner was turned. His blood pressure moved up, and again, after an hour, the procedure was completed.

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I reflected on the difference in attitudes between these very skilled surgeons and the previous Health Care Team of the disability service – the ones who had demeaned and bullied me and treated me as ignorant and inferior, ten years prior. Yes, so very different.

I was not a medical person, but the surgeons had enough confidence in me, and in Joe, to ask for our help during two life-saving surgical procedures. They had valued our help and input. We were not only permitted to remain in the room but invited to assist them.

I asked the surgeon later if draining his lungs was Jonathan’s last chance. “Yes,” he affirmed. It was a sobering thought. They had nothing else to try.