Waiting for news
After being told treatment may be stopped in a couple of days Anna and I tried to prepare ourselves for the worst. It's hard to remember the details of those few days but I do remember that there were a couple of times when people were starting to refer to Joe in the past tense. It felt like everyone had already given up on him and all we were doing was waiting for the inevitable.
Two days later Joe's lung collapsed again and he had to have another chest drain in. Despite this, he was relatively stable and his oxygen requirements fluctuated only slightly; remaining around 50/60%. Anna and I felt like we we were walking a tightrope in terms of our emotions. I have talked before about loss of hope but that 'hope springs eternal' is something we are all familiar with. And hope is necessary; without it we none of us would get through our daily lives. when things are bad we all hope that our lives are going to improve; that a crap day at work will be better tomorrow; that we will win the lottery; that the new year will bring in good luck. In ICU however, hope is cruel and exhausting. To be lifted up with each minuscule improvement Joe made only to be left with the utter devastation we felt when he crashed again was the pattern of our days.
When Joe's lung collapsed again that day we felt it was only a matter of hours before they confirmed to us they were going to stop treatment. We found ourselves watching for any sign that the doctors were going to ask us into the relatives room again. Eventually we could stand it no longer and asked to speak to them ourselves. This time it was a different consultant and when we asked again when they planned to stop treatment the doctor said 'we are not giving up yet'. I was so angry at this point I wanted to shout at them and kick out at the furniture in the room. Not angry that they planned to continue treatment; we wanted them to continue while ever there was a chance, what I was angry about was what we had gone through over the last few days. Why tell us they were going to discontinue treatment if there was still hope? Joe hadn't got any better; in fact he was slightly worse so what was different? All the doctor could say was that they didn't want to give up on Joe. We came out of this meeting bewildered and unsure about what the future held; too battered to take anything positive from what the doctor had said and utterly exhausted.
It was at this point that we made the decision to go home. Considering what the doctors had said we thought that we may well be in for a very long haul. Joe was not getting any better and because his oxygen levels had dropped dangerously low on so many occasions we knew that there was the possibility of brain damage; although the doctors would neither confirm nor deny that. Also, the damage his lungs had suffered from the bleeding was significantly exacerbated by the damage done from being on a ventilator for such an extended period. What this meant was that even if Joe did recover the chances were that he would need months of rehabilitation. This sounds like we were becoming more positive about the chances of his recovery when in fact the doctors told us he had less than a 10% chance of survival. However, we had moved on from thinking that Joe's death was imminent. Telling us they may stop treatment had changed our thinking. Instead of hope that he would recover we had moved to being just grateful for some extra time with him.
We knew that moving home meant the daily drive to Leeds but it also meant we could have some semblance of normality in between visits. We could spend some time with Tracey, Robbie and Beth and our grandson Junior, and still see Joe as often as we had been doing. Our thinking was that if this was going to be further months of uncertainty we needed to put longer term plans in place. I knew that soon I would have to go back to work. I had been off for 4 weeks and whilst they had been patient I wasn't sure how much longer they would remain so. In addition to this I was now getting to the end of paid leave and we couldn't afford for me not to get paid. Especially not with the costs of staying in Leeds, hotels, the cottage and everything else that goes with living out of a suitcase. It felt awful to be considering practicalities like this but we had to do it. We took the decision on Thursday 8th of March and decided we would move out of the cottage on Sunday 11th after visiting that evening.
Two days later Joe's lung collapsed again and he had to have another chest drain in. Despite this, he was relatively stable and his oxygen requirements fluctuated only slightly; remaining around 50/60%. Anna and I felt like we we were walking a tightrope in terms of our emotions. I have talked before about loss of hope but that 'hope springs eternal' is something we are all familiar with. And hope is necessary; without it we none of us would get through our daily lives. when things are bad we all hope that our lives are going to improve; that a crap day at work will be better tomorrow; that we will win the lottery; that the new year will bring in good luck. In ICU however, hope is cruel and exhausting. To be lifted up with each minuscule improvement Joe made only to be left with the utter devastation we felt when he crashed again was the pattern of our days.
When Joe's lung collapsed again that day we felt it was only a matter of hours before they confirmed to us they were going to stop treatment. We found ourselves watching for any sign that the doctors were going to ask us into the relatives room again. Eventually we could stand it no longer and asked to speak to them ourselves. This time it was a different consultant and when we asked again when they planned to stop treatment the doctor said 'we are not giving up yet'. I was so angry at this point I wanted to shout at them and kick out at the furniture in the room. Not angry that they planned to continue treatment; we wanted them to continue while ever there was a chance, what I was angry about was what we had gone through over the last few days. Why tell us they were going to discontinue treatment if there was still hope? Joe hadn't got any better; in fact he was slightly worse so what was different? All the doctor could say was that they didn't want to give up on Joe. We came out of this meeting bewildered and unsure about what the future held; too battered to take anything positive from what the doctor had said and utterly exhausted.
It was at this point that we made the decision to go home. Considering what the doctors had said we thought that we may well be in for a very long haul. Joe was not getting any better and because his oxygen levels had dropped dangerously low on so many occasions we knew that there was the possibility of brain damage; although the doctors would neither confirm nor deny that. Also, the damage his lungs had suffered from the bleeding was significantly exacerbated by the damage done from being on a ventilator for such an extended period. What this meant was that even if Joe did recover the chances were that he would need months of rehabilitation. This sounds like we were becoming more positive about the chances of his recovery when in fact the doctors told us he had less than a 10% chance of survival. However, we had moved on from thinking that Joe's death was imminent. Telling us they may stop treatment had changed our thinking. Instead of hope that he would recover we had moved to being just grateful for some extra time with him.
We knew that moving home meant the daily drive to Leeds but it also meant we could have some semblance of normality in between visits. We could spend some time with Tracey, Robbie and Beth and our grandson Junior, and still see Joe as often as we had been doing. Our thinking was that if this was going to be further months of uncertainty we needed to put longer term plans in place. I knew that soon I would have to go back to work. I had been off for 4 weeks and whilst they had been patient I wasn't sure how much longer they would remain so. In addition to this I was now getting to the end of paid leave and we couldn't afford for me not to get paid. Especially not with the costs of staying in Leeds, hotels, the cottage and everything else that goes with living out of a suitcase. It felt awful to be considering practicalities like this but we had to do it. We took the decision on Thursday 8th of March and decided we would move out of the cottage on Sunday 11th after visiting that evening.
Thanks for starting up again, keep going Jane,
ReplyDeletePete