After Jonathan’s second lung procedure his breathing continued to improve significantly. In the next two days a further three and a half litres drained from his left lung, shocking even the doctors. The total from both lungs was more than five litres altogether (well over ten pints) of fluid!

However, analysis of the fluid still did not reveal the source of the problem. They had relieved the symptoms and dire consequences, and respite was accomplished. But they were still in the dark as to the cause of his illness. These benefits would only be temporary.

Normally in a healthy person the fluid present in the lungs is absorbed each day. Increasing fluid in the lungs was a sign of the body not managing some other illness. It was vital to discover where the infection was. If only he wasn’t non-verbal, and could speak of where he was experiencing pain and how severe it was.

Multiple X-rays and scans were performed. Was there a growth or a tumour? Because they had been unsure if the source of the problem could have been with his stomach or bowels, they had for the most part withheld his nutrition while they checked.

They could find no evidence of any tumour or growth. I was thankful.

Interestingly, the doctors informed me that tube-fed people ALWAYS had bowel and stomach problems, because of the lack of fibre. That made sense: it explained a lot of his discomfort over the recent years – but again, such things had never been mentioned in any discussion about tube-feeding by that previous Health Team. Tube-feeding had always been presented as the ultimate solution for people such as Jonathan.

His markers remained extremely high for infection, but at least he was breathing much better, and he was now on low-flow oxygen in decreasing volume. A plus.

A few days later they decided to discharge him. They hurriedly weaned him off the oxygen, and back onto his tube-feeding – which, yes, had been offered only irregularly for five weeks. When he’d been given the nutrition by tube, he had at times vomited, and that could have been fatal.

***

We were astonished that he would be sent home already, so soon after these procedures, as he was still,very obviously, far from well. It didn’t make sense.

Why such a quick exit from the hospital?

They felt he would be safer at home. A number of serious Covid cases had been admitted to his ward – the respiratory ward.

***

The hospital did not tell the Group Home the reason for his discharge. Perhaps they did not want to alarm the staff. They, however, assumed he was well, and were all very happy to see him home, thinking he was ready to resume normal life.

I told them, myself, about the Covid, and I had to insist they did not send him to his Day Program straight away. He was still very ill and would have remained in hospital if not for the presence of Covid. They were shocked; they promised to look after him well and give him plenty of rest. It was a big responsibility for them.

The hospital discharge papers had been quickly drawn up to facilitate a hurried departure, and they had included a medication to help drain the remaining fluid from his lungs. This concerned me, as the doctors had taken him off that particular medication – because it reduced his blood pressure significantly and alarmingly.  I knew the nurse was at the Group Home to check his blood pressure only two days a week!

I insisted they withhold that particular medication until they had spoken with a hospital doctor.

The nurse phoned the doctor at the hospital but could not make contact. She would try again in two days when she was next on duty at the home.

I was Jonathan’s legal guardian – and I had been given authority about his health and medical matters. I refused permission to the Group Home staff to give the medication. After all, the nurse would not be around to monitor his blood pressure, and the Group Home staff did not have authority to do so. What if his blood pressure plummeted to dangerous levels? They would not even know.

Fortunately, the caregivers respected me and were happy to follow my instructions. I had spent many hours with each when they were doing shifts at the hospital. Although many were relatively new, our time together spent watching over Jonathan had initiated pleasing and positive relationships.

When the nurse finally got through to the hospital doctor, he agreed with me. That medication should not have been on his discharge papers.

Vigilance, for everything. It never ended.

In retrospect, being taken to the Guardianship Tribunal had not been a bad thing. Sometimes it is only in looking back that we see the benefits of painful experiences.

***

He lasted two weeks, and then had to return to hospital, too sick to stay at home.

This time the Emergency Department ran extra tests.

Within a few days they had determined the type of rare bacterial infection he had contracted – one of the ten most dangerous in the world, and resistant to almost all antibiotics. However, it was not the MRSA infection he’d previously had, which also figured in the ten most dangerous bacteria.

The medical team knew of one antibiotic which they thought would work well for him. They immediately switched him over to that one – and it was effective! Improvement straight away.

I was extremely thankful that we had given Jonathan the opportunity to have ongoing medical treatment, for in fact, after all he had been through, once the diagnosis was made, it was a relatively simple fix.  He improved gradually.

The doctors and nursing staff were very pleased. Later conversations with them revealed that they had doubted his survival.

The surgeon draining Jonathan’s lungs had pushed himself beyond his own comfort zone – we were thankful for his willingness to try, for Jonathan’s sake and for ours.

We were also thankful for his clever mind and skilful hands, as he did something which had not been attempted before. If he had not, Jonathan would not have lived long enough for anyone to discover what the rare bacterium was.

Kudos to him, and his team.

We were so grateful for all the care Jonathan had received, for the fact that they had chosen to see him as a valuable person. They had all learned more, from hands-on experience, about the level of care needed by people with complex disabilities. Some had had no previous experience like this. In his own way, Jonathan was a teacher.

Eighteen days later Jonathan was home again, his markers still not wonderful, but moving downwards toward normal. He steadily made progress towards full health, but became tired very easily – not surprising after seven and a half weeks in hospital.

Such a relief, for him and for all of us, after these exhausting two months.

***

We prepared for Christmas, now only a month away, looking forward to a wonderful time with all the family together – and well.

Jonathan missed the Christmas gathering. Despite every precaution, he'd caught Covid!