Saying goodbye to Joe

In the hours after Joe's cardiac arrest on the13th March we sat by his bedside. Knowing there was no longer any hope at all we just sat and waited. His nurse, Hannah, kept checking his oxygen saturation and this time there was a doctor there too. Other staff members kept flitting to and fro. It all felt different. Joe looked different. When he had suffered setbacks in the past and recovered slightly, even after  his major setback on the 5th March, Joe still looked peaceful and just asleep. To us, this time, it didn't feel like Joe was still with us.

Every half an hour Hannah tested his oxygen saturation and each time she came back with the result we watched her. We could see from the monitors that it wasn't good and the blood tests were much more accurate. Hannah and her colleagues were used to us. On the odd occasions when a new staff member came on to the ward and we asked questions the others would make it clear they should share the information because we knew what the numbers meant.

But that evening Hannah wasn't saying much. She tried to be discreet but all of our senses were heightened and we picked up every glance and each nuanced expression on her face. The non-verbals were crystal clear and we knew what was happening but we were too scared to ask. Hannah wasn't telling us what the results were but she was discussing it with the doctors. Mid evening came and after one of the blood tests Hannah shone a light into Joe's eyes. From where I was sitting it didn't look as if his pupils were responding. The silence was loaded and eventually became too much so I stood up and asked Hannah what was happening.

She looked at me, and her sympathy and sadness were almost palpable. Turning to Anna she asked us how honest we wanted her to be. Desperately wanting some hope but knowing there was nothing left to hang on to, Anna told her she wanted cards on the table.  Fooling ourselves wasn't an option any more. Despite the fact we knew already that Joe wasn't going to come through this latest setback, Hannah's words, stark and devastating, ripped through us as she confirmed that Joe wasn't going to pull through.

Tears flowing, we sat with Joe, held his hand and stroked his hair.  His oxygen therapy was at 100%  with full pressures but Joe's blood gases were showing levels of oxygen too low to sustain life. Joe was suffering multi organ failure and there was nothing more that could be done for him. Hannah explained that Joe was unlikely to live beyond the next few hours and his condition was so precarious he certainly wouldn't survive the next few days. Joe had suffered enough and it was time to say goodbye. Trying to find words to describe this sequence of events, as with so much of this blog, is difficult. I can't say that we made a decision that night because that suggests we had a choice. It was more a sense that we had been travelling a path that was always going to lead to this; that the fleeting hopes we had experienced in the past few weeks were simply an expression of that old adage that 'hope springs eternal'. Now we knew that the time had come to accept the inevitable.

Hannah explained that Joe's sedation would be turned up and his oxygen therapy reduced to normal levels. Hannah assured us that Joe wouldn't feel anything and would just stop breathing. He would not be taken off life support;  he would simply be given normal oxygen levels and pressures and this added to the feeling that this wasn't something we had to make a choice about. It was just time for him to stop fighting. Hannah said she thought it would take as little as half an hour as Joe could not sustain his own levels. We needed to get people through as soon as possible, Even though nothing would be done until we were happy to go ahead Joe could die before anyone got there and we wanted them to have chance to say goodbye.  Hannah asked us to call our family and get those who could make it to come to the hospital. Only then, only when we were ready, would Joe's life support be reduced.

Those calls were the hardest we have ever had to make. I phoned the children and told them to drive carefully. It was now late evening, they had a 60 mile journey to make under awful circumstances and I was very worried. We had made at least four or five calls to Joe's brother and sisters over that last month when we had thought his death was imminent and each time they had made the journey through expecting the worst. This time their worst fears were confirmed as there was no hope left.

Even now, writing this, I can feel that same gut wrenching pain at having to deliver the awful news. Inflicting pain on your own children goes against every fibre of your being as a mother. For Anna and me, telling our family, both immediate and extended, was almost too much to bear. Eventually we had called everyone; those who could were coming to say goodbye to Joe. Those who couldn't, faced a nightmare evening waiting for news and I felt for them.

Eventually everyone arrived and we all sat with Joe. There were lots of people there that evening. Joe's brother and sisters, other family members,  half a dozen of Joe's closest friends, their parents and his girlfriend and her parents. Probably around 30 people came to the hospital that night to say their goodbyes to Joe. There were many others who wanted to be there and couldn't. We all took turns to spend some private time with him and then eventually, after everyone had spent the time with him they needed, Hannah looked at Anna and she nodded. Hannah went round the side of the bed and we watched as she increased the sedation and then turned down the oxygen to 21%.  Anna held Joe's hand and steadfastly ignored the monitors. Focusing on her beloved son's face she didn't want to look at them. I found myself unable to look away and as I watched Joe's oxygen level decreased almost immediately and his heart rate dropped.  Within a few short minutes his heart stopped and Hannah said quietly, 'he's gone'. It was, as she had promised, peaceful and quick. We looked at Joe and even though we knew it was true we were utterly incapable of comprehending that this young, vibrant, beautiful 17 year old boy was no longer with us.

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