This hard month

Thirty-two years ago, we fostered a severely disabled boy, caring for him until his adulthood. He then moved to a Group Home where there was specialised equipment and qualified staff, for he needed twenty-four-hour care. After his birth parents died, we became his legal guardians.

There have been quite a few times in his life when I have had to be his advocate and challenge others who were abusing their positions of responsibility and care. Our life journey with him has never been either easy or smooth.

A month ago, he became seriously ill with bacterial pneumonia, and pleural effusions. Because of his disabilities there was concern as to whether he would be able to recover with just antibiotics, and other intravenous medications. He was not considered to be strong enough to cope with a lung drain.

After nearly three weeks it seemed that he had started to improve.

However, a few days later, his health plummeted, and he was critically ill. It was terrifying. Was this the end for him?  

On Tuesday morning, the situation was so grave that an immediate decision was made by medical staff to insert a drain into one of his lungs, under local anaesthetic. A tube would be inserted to drain out the infected fluid and analyse samples. Other medical problems meant that he could not receive a general anaesthetic. It was his only chance now, we were told. We offered him that chance.

My role was to hold him firmly and keep him perfectly still during the operation and offer love and comfort for the half-hour the procedure would need. Complications arose, rapid decisions had to be made, and it took nearly an hour.

It was not easy, and I was completely exhausted.

His medical problems precluded morphine for pain relief – he should have only Panadol. Three times medical staff needed to override that and offered a tiny amount of morphine anyway. They managed his pain as well as they could.

I have spent hours every day at the hospital sitting with him, offering hope and comfort, marvelling at his level of tolerance of pain, his resilience, and his courage.

He is a fighter, and he’s tough. He wants to live. I believe he is entitled to the same medical care as anyone else, and the opportunity to return to his limited but happy life.

He has had X-rays, ultra-sound scans, and every possible medical help. Not easy for someone with his level of immobility. Blood tests every day – very difficult with his veins. He’s looking battered and bruised. Yet I cannot fault the lengths our dedicated medical staff have gone to, always trying to be gentle and sensitive to his needs and ensure his well-being and comfort, always trying to offer cheer. We know all the nurses quite well now.

Yes, he is definitely the ward favourite. Not those non-compliant people in other rooms, not the guy being monitored by armed security, not the one who caused the whole ward to be locked down because he wanted to escape to the bottle-shop. No, the favourite is the young disabled man in Bed 25.

To those who have been praying for him – thank you. 

This morning the tube was removed, after draining 1500 millilitres of fluid from his right lung within three days. Two and a half pints!

This afternoon we went through it all again, with his left lung. They tried, but failed, to do a less invasive procedure. It is hard to watch someone you care about in such pain, knowing he cannot ask for help for himself. Holding him still, playing soft music on my phone for him to focus on, while I could see suffering, panic, and desperation in his eyes, while his back is cut, tubes inserted, and stitches done.... Again, it took nearly an hour.

Already his breathing is easier, and soon he will not be dependent on maximum-flow oxygen. His smile will return. This is just one more hurdle in life that he will overcome.

I give thanks for the skill and kindness of the surgeons, doctors, and nursing staff. A medical team of five all doing their best late on a Friday afternoon to give this man life – impressive. Their willingness that my son and I should be present to hold our foster son so he could be calm and reassured by our voices and touch – compassionate. The fact that he has a private room to meet his needs – we are thankful.

His hospitalisation and treatments are free.

I am so thankful to live in a country where all receive the same quality of free medical care in the public health system – the poor and vulnerable, the homeless and disabled are all treated with the same level of care and respect as anyone else. In an emergency or accident, everyone is helped and treated immediately, rich and poor alike. Those who have private health insurance can be assured of moving into a private room and their choice of doctor or surgeon, and for elective procedures there is a shorter waiting list. 

I know that in many countries our foster son would have been discarded at birth, or that he would have been allowed to die at a couple of other points in his life, when others decided for him that that was enough, or that he was costing the system too much money for his care.

When the time is right, he will pass into God’s presence, but not because he is an inconvenience or because he costs too much to look after. It will be at a time of God’s choosing and as for all of us, it will be when there is nothing more that can be done medically to help.

Meantime, I thank you for your ongoing prayers and support, for him, for me and for the rest of my family. I still feel peace that we have made the right decisions on his behalf. It's been a tiring month for all of us ....

He IS a fighter, and despite everything, he is strong, and a role model of perseverance and courage. He'll get through this!