Visiting from home
It's nearly 10 months now since Joe died and we are into the New Year. Saturday the 22nd of December would have been his 18th birthday and we have just had our first Christmas without him.It's still very hard to believe he won't be coming back, but the Christmas and New Year break was not as bad as we had feared. I'm not sure why but I guess nothing could be as bad as what happened when he died. We still miss him but we are learning to find a new way of living. The New Year was significant. We worried that 'leaving him behind in the old year' would be hard and feel like a betrayal. ( We are all such pagans are we not) It doesn't feel like that. We still think about him at some point in every hour of every day but leaving 2012 behind felt like a relief and we both feel lighter.It feels possible now to write about the day he died.
We had moved out of the cottage that had been our salvation and returned home on Sunday night. This move brought mixed feelings. It was so good to be at home but awful to come home without Joe. We'd had a new extension built whilst he had been in hospital and it felt odd to know that he hadn't seen it yet. Our house felt a disconcerting mix of the familiar and strange, and it wasn't all to do with this new part of it. We had been away for more than 5 weeks with only 2 or 3 short visits home to pick up clothes and attend other appointments.
We prepared for the journey back to Leeds the next day and went to bed.
Our first visit to Joe from home went smoothly. An easy drive - it takes about 90 minutes - and we were back in Leeds. Joe was settled and had got through a comfortable night with no dramas. Oddly, coming back into the ward, the waiting room and hospital seemed more familiar than our own home. We sat with him for the evening and he seemed very stable. 'Stable', that word which seems to have many connotations when people are in extremis. We had heard it so many times in the previous few weeks and what it meant varied from being 'close to death but still here' to 'okay, given the circumstances'.
I really thought this was going to work. This visiting from home was a good thing and would help us prepare for when he came out of intensive care and into rehab. We knew that having spent so much time in hospital on a ventilator that Joe would need extensive rehab when he came off the ventilator. It is strange writing this now. It seems to have been a jump from fearing he was going to die imminently to thinking long term and planning for long term care; in my head at least. We drove home that night feeling 'stable'.
When we visited Joe we always felt better when we had seen him; even if it was only for a few minutes. The long time between the end of visiting in the evening and the 2pm visiting the next day always seemed interminable. Though there were many occasions when the staff let us in early and we stayed late because Joe was so ill, the usual visiting was 2pm until 9pm. Tuesday 13th March was no exception. We got there just before 2pm and went straight down to his bedside. Again, he was stable; there had been no emergencies during the night. We sat with him for only a short time, perhaps an hour or more, and then someone came to say they needed to change the line that was dialysing him. Often, I think because we had been there for so long, the nurses would let us stay with him when they did treatments. This time they asked us to leave. I don't think there was anything significant about it; just individual differences. We sat up in the waiting room. We had brought one of Joe's best mates with us, Steve, and we sat and chatted and waited to be let back down to Joe's bedside. We were used to long waits. The nurses would say it would be a few minutes and it would take an hour. So we weren't unduly alarmed when we were still sitting there almost 2 hours later and had still not been asked back to Joe's bedside. We were a bit impatient though. We had come to see Joe and we were planning to go back home about 6 or 7 and a lot of our time so far had been spent sitting in the waiting room. I wandered down to near his bedside but could see that the curtains were drawn and that people were still in with him so went back up again. We were all getting a bit twitchy at this point so it wasn't long after that and I wandered down again. This time I saw a nurse I recognised and I asked her what was happening.
'They are just putting another tube in; his lung has collapsed', she said
A collapsed lung is serious, but again we were not particularly worried. This was something that had happened 4 or 5 times previously so, whilst not good for Joe's stability, it didn't set any alarms ringing particularly. She explained that it shouldn't be long now and we could go and see him. So we went back up and sat in the waiting room again.
Only a very short time later one of the doctors rushed through the door of the waiting room, obviously distressed and slightly dishevelled.
'His heart has just stopped, we are trying to get him back, do you want to be with him?'
Once again words are inadequate to describe the horror. We jumped up and ran after her. When we got to his bedside Anna rushed in first. My eyes flew to the monitors and I could see a heart beat.
'It's okay, they've got him back'
As I said this to Anna she collapsed back into me and I stood trying to hold her up. Anna said later that as she ran through the curtains she saw a doctor finishing compressions. Joe was still alive but his heart rate and blood pressure were very unstable. The nurses got us chairs and we sat down next to Joe's bed and waited.
When I sat I realised that my heart rate was through the roof. I have a condition called Supra Ventricular tachycardia (SVT) where my heart can flip into an abnormal rhythm and reach 250 beats per minute. Anything can cause it, simply bending down, or it can flip for no apparent reason, but stress is a major contributor. I couldn't believe it. This was the last thing we needed right now. I went down to the waiting room and stretched out flat and tried to make it go back into normal rhythm. Lying flat, holding my breath, massaging the carotid artery, all these things can help. It didn't work so I went back down to see Joe, my heart thumping through my chest. There seemed to be some kind of weird symbiosis going on between me and Joe, both of us having erratic heartbeats at the same time. I tried to concentrate on Joe's monitor and take my mind off what was going on in my own body. Eventually, after about half an hour I realised my heart had gone back into normal rhythm. Still fast but it was coming down. I could focus on Anna and Joe.
We had moved out of the cottage that had been our salvation and returned home on Sunday night. This move brought mixed feelings. It was so good to be at home but awful to come home without Joe. We'd had a new extension built whilst he had been in hospital and it felt odd to know that he hadn't seen it yet. Our house felt a disconcerting mix of the familiar and strange, and it wasn't all to do with this new part of it. We had been away for more than 5 weeks with only 2 or 3 short visits home to pick up clothes and attend other appointments.
We prepared for the journey back to Leeds the next day and went to bed.
Our first visit to Joe from home went smoothly. An easy drive - it takes about 90 minutes - and we were back in Leeds. Joe was settled and had got through a comfortable night with no dramas. Oddly, coming back into the ward, the waiting room and hospital seemed more familiar than our own home. We sat with him for the evening and he seemed very stable. 'Stable', that word which seems to have many connotations when people are in extremis. We had heard it so many times in the previous few weeks and what it meant varied from being 'close to death but still here' to 'okay, given the circumstances'.
I really thought this was going to work. This visiting from home was a good thing and would help us prepare for when he came out of intensive care and into rehab. We knew that having spent so much time in hospital on a ventilator that Joe would need extensive rehab when he came off the ventilator. It is strange writing this now. It seems to have been a jump from fearing he was going to die imminently to thinking long term and planning for long term care; in my head at least. We drove home that night feeling 'stable'.
When we visited Joe we always felt better when we had seen him; even if it was only for a few minutes. The long time between the end of visiting in the evening and the 2pm visiting the next day always seemed interminable. Though there were many occasions when the staff let us in early and we stayed late because Joe was so ill, the usual visiting was 2pm until 9pm. Tuesday 13th March was no exception. We got there just before 2pm and went straight down to his bedside. Again, he was stable; there had been no emergencies during the night. We sat with him for only a short time, perhaps an hour or more, and then someone came to say they needed to change the line that was dialysing him. Often, I think because we had been there for so long, the nurses would let us stay with him when they did treatments. This time they asked us to leave. I don't think there was anything significant about it; just individual differences. We sat up in the waiting room. We had brought one of Joe's best mates with us, Steve, and we sat and chatted and waited to be let back down to Joe's bedside. We were used to long waits. The nurses would say it would be a few minutes and it would take an hour. So we weren't unduly alarmed when we were still sitting there almost 2 hours later and had still not been asked back to Joe's bedside. We were a bit impatient though. We had come to see Joe and we were planning to go back home about 6 or 7 and a lot of our time so far had been spent sitting in the waiting room. I wandered down to near his bedside but could see that the curtains were drawn and that people were still in with him so went back up again. We were all getting a bit twitchy at this point so it wasn't long after that and I wandered down again. This time I saw a nurse I recognised and I asked her what was happening.
'They are just putting another tube in; his lung has collapsed', she said
A collapsed lung is serious, but again we were not particularly worried. This was something that had happened 4 or 5 times previously so, whilst not good for Joe's stability, it didn't set any alarms ringing particularly. She explained that it shouldn't be long now and we could go and see him. So we went back up and sat in the waiting room again.
Only a very short time later one of the doctors rushed through the door of the waiting room, obviously distressed and slightly dishevelled.
'His heart has just stopped, we are trying to get him back, do you want to be with him?'
Once again words are inadequate to describe the horror. We jumped up and ran after her. When we got to his bedside Anna rushed in first. My eyes flew to the monitors and I could see a heart beat.
'It's okay, they've got him back'
As I said this to Anna she collapsed back into me and I stood trying to hold her up. Anna said later that as she ran through the curtains she saw a doctor finishing compressions. Joe was still alive but his heart rate and blood pressure were very unstable. The nurses got us chairs and we sat down next to Joe's bed and waited.
When I sat I realised that my heart rate was through the roof. I have a condition called Supra Ventricular tachycardia (SVT) where my heart can flip into an abnormal rhythm and reach 250 beats per minute. Anything can cause it, simply bending down, or it can flip for no apparent reason, but stress is a major contributor. I couldn't believe it. This was the last thing we needed right now. I went down to the waiting room and stretched out flat and tried to make it go back into normal rhythm. Lying flat, holding my breath, massaging the carotid artery, all these things can help. It didn't work so I went back down to see Joe, my heart thumping through my chest. There seemed to be some kind of weird symbiosis going on between me and Joe, both of us having erratic heartbeats at the same time. I tried to concentrate on Joe's monitor and take my mind off what was going on in my own body. Eventually, after about half an hour I realised my heart had gone back into normal rhythm. Still fast but it was coming down. I could focus on Anna and Joe.
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