Life support
I suppose technically Joe had been on life support for a few months. The dialysis that he had needed for the last few months was life support; in that, without it he would eventually have died. Having said that, what most people mean when they talk about life support is that help given in an acute situation. When there is a significant chance that someone will die if they are not given support with their breathing or put on bypass for a time. This was the situation that Joe was in.
His oxygen saturation was dipping dangerously low and his chest was visibly moving in his attempts to breathe against the high pressures of the oxygen pushing through the mask. He was so hot we kept wetting the antiseptic towels used in ICU and putting them on his head and chest.Joe was feeling so poorly at this time he was becoming agitated, gesticulating in an attempt to find out how long it would be before they came to anaesthetise him. Each time a nurse or doctor walked past his field of vision his eyes would follow them, clearly hoping they were there to help him. After we had once more put cold wet towels on his chest and head he started to tremble all over and I asked if he was cold. He briefly pulled down the mask and quite literally gasped, 'no, tired'! Anna and I were beginning to worry that his heart would give out before they came to ventilate him. It was beating at well over a 120 bpm, his blood pressure was around 150/100 and he was trembling so much he looked like he was starting to fit.
For someone who loves words and their ability to pick out the nuances of the human experience I have been surprised by the paucity of language to explain our feelings at this point; and my ability to truly convey the horror of watching Joe struggle and being unable to do anything substantial to help. That mechanical ventilation was something we longed for perhaps goes some way to revealing the awfulness of this experience.
As we waited with Joe for the doctors to come we tried very hard not to show Joe how worried and upset we were; and I do believe that we succeeded. We kept reassuring him that it wouldn't be long and the doctors would be there soon. It is normal procedure in ICU to only allow 2 visitors per bed at any one time. Given how ill Joe was, and the nature of our 'exceptional' family, there were 4 of us watching over Joe at this time. Jane and Cheryl and Anna and me. (See the earlier blog on the 13/5/12)
In an attempt to lighten the mood and distract Joe, Jane said to him 'bet you've always dreamed of having 4 women around your bed haven't you Joe? It's just a pity it's us 4 women!' Joe pulled down his mask and said 'I can't think of 4 women I would rather have around my bed'. Those were the last words we were to hear him say.
Oddly enough, given my previous comments about language, Joe's last words say so much about the kind of boy he was. When the doctors ventilated him we had to leave his bedside and when we were allowed back in to see him they told us that as they went to anaesthetise him he pulled down his mask one last time and said 'thank God for that, let's get on with it'.
Joe had gone through a great deal in the last few months. His kidney condition had been there from birth but it had only been the last year that it had started to affect his daily life. He was used to going to the hospital for regular check ups but it had always been a case of just monitoring his condition: though he was on some pretty hard core medication for one so young. In the last few months however, he had to adjust to moving from having a relatively normal life for almost 16 of his 17 years, to the idea of months, perhaps years, of dialysis for 8 hours a day, a strict sterile regime and the curtailment of any extended periods away from home. Apart from one day when it all seemed to get too much for him, he coped with this with a stoicism that was quite remarkable.
Unlike many of his contemporaries, Joe had no problems articulating his emotions and he was quite happy to express affection. I often put that down to living with the 2 of us for most of his life. He wasn't strangled by the cultural expectations often found in different families that implied that 'boys should be brave', and keep their emotions in check. He lived life with a breezy, laid back attitude and an irrepressible sense of humour.
His oxygen saturation was dipping dangerously low and his chest was visibly moving in his attempts to breathe against the high pressures of the oxygen pushing through the mask. He was so hot we kept wetting the antiseptic towels used in ICU and putting them on his head and chest.Joe was feeling so poorly at this time he was becoming agitated, gesticulating in an attempt to find out how long it would be before they came to anaesthetise him. Each time a nurse or doctor walked past his field of vision his eyes would follow them, clearly hoping they were there to help him. After we had once more put cold wet towels on his chest and head he started to tremble all over and I asked if he was cold. He briefly pulled down the mask and quite literally gasped, 'no, tired'! Anna and I were beginning to worry that his heart would give out before they came to ventilate him. It was beating at well over a 120 bpm, his blood pressure was around 150/100 and he was trembling so much he looked like he was starting to fit.
For someone who loves words and their ability to pick out the nuances of the human experience I have been surprised by the paucity of language to explain our feelings at this point; and my ability to truly convey the horror of watching Joe struggle and being unable to do anything substantial to help. That mechanical ventilation was something we longed for perhaps goes some way to revealing the awfulness of this experience.
As we waited with Joe for the doctors to come we tried very hard not to show Joe how worried and upset we were; and I do believe that we succeeded. We kept reassuring him that it wouldn't be long and the doctors would be there soon. It is normal procedure in ICU to only allow 2 visitors per bed at any one time. Given how ill Joe was, and the nature of our 'exceptional' family, there were 4 of us watching over Joe at this time. Jane and Cheryl and Anna and me. (See the earlier blog on the 13/5/12)
In an attempt to lighten the mood and distract Joe, Jane said to him 'bet you've always dreamed of having 4 women around your bed haven't you Joe? It's just a pity it's us 4 women!' Joe pulled down his mask and said 'I can't think of 4 women I would rather have around my bed'. Those were the last words we were to hear him say.
Oddly enough, given my previous comments about language, Joe's last words say so much about the kind of boy he was. When the doctors ventilated him we had to leave his bedside and when we were allowed back in to see him they told us that as they went to anaesthetise him he pulled down his mask one last time and said 'thank God for that, let's get on with it'.
Joe had gone through a great deal in the last few months. His kidney condition had been there from birth but it had only been the last year that it had started to affect his daily life. He was used to going to the hospital for regular check ups but it had always been a case of just monitoring his condition: though he was on some pretty hard core medication for one so young. In the last few months however, he had to adjust to moving from having a relatively normal life for almost 16 of his 17 years, to the idea of months, perhaps years, of dialysis for 8 hours a day, a strict sterile regime and the curtailment of any extended periods away from home. Apart from one day when it all seemed to get too much for him, he coped with this with a stoicism that was quite remarkable.
Unlike many of his contemporaries, Joe had no problems articulating his emotions and he was quite happy to express affection. I often put that down to living with the 2 of us for most of his life. He wasn't strangled by the cultural expectations often found in different families that implied that 'boys should be brave', and keep their emotions in check. He lived life with a breezy, laid back attitude and an irrepressible sense of humour.
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