5 days post transplant
Early the next morning we got a call from the hospital to say that Joe was getting distressed and could we get to ICU. He had not had a good night. He was so scared that he dare not go to sleep and with that and trying to breathe against the pressure of the mask he was exhausted. It had been suggested to him earlier that he be ventilated to give him some respite but he was very much against it. The doctors and nurses were still unsure what was going on but it was becoming clear that this was no simple infection. Joe's heart rate and blood pressure were rocketing and his condition was becoming harder to manage. Quite understandably, Joe was terrified and utterly drained. Anna stood at the end of his bed and massaged his feet and I talked to him about going to a place in his head where he felt happiest. Slowly he started to calm down and the nurse pointed to the monitors and we could see his heart rate reducing. For a short time he slept but he was soon awake again and struggling to breathe. It is a mark of quite how exhausted he was that this time that when the consultant said that artificial ventilation was becoming the only option Joe welcomed it.
The doctors asked for a meeting and we went into the relatives' room for what was to be the first of many such meetings. What I remember about this meeting is blurred a little by time and shock. The consultant tried to explain why they needed to intubate Joe and that he was, as he put it, 'quite poorly'. All the time he was talking it felt like his voice was coming from a distance, or as if it was on screen and someone had turned the sound down. I remember looking at the consultant's face and that of Sarah, the ICU nurse and thinking there was something awful as yet unsaid. I had an odd feeling of impatience and it felt like I was holding my breath. He talked about how quickly Joe had deteriorated and he was concerned to emphasise the risks of ventilating someone. He seemed to hesitate and then said' you need to know there is a chance he might not make it'.
I have heard people talk about shock and use language in a way that physicalises it and at that moment it really did feel like a blow. I held on to Anna, we looked at each other in utter disbelief and she just said 'I can't lose him'.
The consultant gave us a minute and then said how sorry he was and asked if we had any questions at that time. I think we were so shocked that nothing came to mind; except to ask when they were going to ventilate Joe. Telling us it would be as soon as possible he left the room to organise it. We sat trying to compose ourselves so we could go back and see Joe without revealing anything of our fears. The last thing he needed was for us to look worried, he was scared enough.
The doctors asked for a meeting and we went into the relatives' room for what was to be the first of many such meetings. What I remember about this meeting is blurred a little by time and shock. The consultant tried to explain why they needed to intubate Joe and that he was, as he put it, 'quite poorly'. All the time he was talking it felt like his voice was coming from a distance, or as if it was on screen and someone had turned the sound down. I remember looking at the consultant's face and that of Sarah, the ICU nurse and thinking there was something awful as yet unsaid. I had an odd feeling of impatience and it felt like I was holding my breath. He talked about how quickly Joe had deteriorated and he was concerned to emphasise the risks of ventilating someone. He seemed to hesitate and then said' you need to know there is a chance he might not make it'.
I have heard people talk about shock and use language in a way that physicalises it and at that moment it really did feel like a blow. I held on to Anna, we looked at each other in utter disbelief and she just said 'I can't lose him'.
The consultant gave us a minute and then said how sorry he was and asked if we had any questions at that time. I think we were so shocked that nothing came to mind; except to ask when they were going to ventilate Joe. Telling us it would be as soon as possible he left the room to organise it. We sat trying to compose ourselves so we could go back and see Joe without revealing anything of our fears. The last thing he needed was for us to look worried, he was scared enough.
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