What happened on that day?
I woke up in the bed next to her in PICU. I had made the decision about a week earlier, after she had reacted badly again to the steroids she was being given, not to leave her side unless my husband was with her, and then only for the shortest time period. So I slept on her bed with her every night, and the doctors and nurses in PICU were happy for me to do so.
I realise this would not be possible with every little patient, but I really should write to them after all these years and explain how important it was for me to be able to do that. Whenever Jasmine was poorly she didn't want to go in her cot, she wanted to be in Mummy's bed in Mummy's arms, and then she could sleep. It helped me sleep too, I knew I would wake if she was in distress. Being able to sleep next to her in PICU gave me (and her I am sure) comfort.
So I woke up, and waited for Jeff to arrive from our accommodation close by. Then off I went for a quick shower and teeth clean before coming back.
The rest of the day passed by as it usually did, with doctors and nurses coming to the bedside, taking measurements, using machines to measure 'activities' sweetly smiling at me but not telling me a damn thing about what those tests were telling them. "We pass the information onto the relevant consultant, we are just the technician / junior / whatever they were... " The point was they might be 'just the tech', but I was this childs' Mother, and they knew more than me, which hurt like hell.
The secrecy that went on on that ward is still, often, the material of my nightmares. Often we would get the 'opportunity to ask questions' when Jeff and I were marched off to a 'private room' with a whole load of clinicians to 'discuss progress'.
Nobody seemed to appreciate the high level of stress that caused me, having to be so far away from my child for however long it took to answer the questions, or the pressure I felt to remember all the questions and fully take in the answers during my 'opportunity' to do so.
I so wanted to be able to spend my time, while Jasmine was 'sleeping' reading all the notes and knowing every minute detail of what was going on but this was not allowed. The pages and pages of information about MY child that was just sitting there on that desk was 'out of bounds'
So the day passed by, but I knew we were awaiting 'the' result. Jasmine had received massive doses of a drug called Thiopentone, when she first arrived on PICU, and it was taking forever to wash out of her body. Until that drug had cleared enough, we could not know if she was going to survive or if she was (I hate this phrase) brain-dead.
I remember sitting in the rocking chair near her bed, and seeing her doctor looking at a computer screen on the main desk. I could see Jasmines name and that the test result was on there. And I could see the result. About 2. I knew it needed to be less than about 4.
I didn't feel any of the things you, or indeed I , would expect a mother to feel in that moment. I didn't feel a single thing. My body and brain shut down in preparation for what was about to happen.
The nice doctor with the fabulous blonde curly hair came, knelt down next to Jeff and I, and said, I'm sorry, the value is 2. We already knew that because Jasmine was showing no signs of any response whatsoever, this meant the worst.
I simply said 'Thank-you'. In that moment I think I thought "Thank you" for telling me the minute you knew, rather than waiting for 'the opportunity' and "Thank You " for doing it here rather than dragging me away from my girl yet again.
There were spontaneous tears running down my face, but I wasn't actually crying if that makes sense. I wasn't making the noise or doing the movements. My body was reacting to the news, but me, my mind and soul, I couldn't let it in. I have never let it in.
We were then told that 'the tests' to confirm Jasmine was in fact brain dead would be undertaken, and would we like to watch? I was horrified by this question and certainly did not want to watch. In hindsight I do see that some families would want to be sure there really was no response from any test rather than just accepting this as correct from a doctor. But I already knew she was gone.
We were taken to 'the room' and joined as I had requested by the hospitals chaplain, who I had grown to like very very much and who had provided so much support.
We talked, my tears flowed, I asked if I had said the wrong prayers for my child? I had prayed she would not suffer, should I have asked God to not take her from me? Were they two different things? I was reassured I hadn't got my prayers wrong.
Jeff was quietly sobbing. What was there for him to say?
The doctors came in and confirmed the tests.
They asked us if we would like Jasmine to be moved to a side room, and we could have one last night with her before they withdrew support in the morning. It was about 6:30pm.
I didn't want that. I felt if her little soul needed to fly away, it was cruel to keep it trapped in a body that no longer worked rather than set her free, and it was undignified. I wanted to let her go now (even though I never wanted to let her go).
We had had discussions about her body being able to save other little children, but we were told due to uncertainty over her diagnosis this would not be a possibility. At the time I must admit I was relieved. I wouldn't have to choose between holding her in my arms and letting her go for as long as I wanted, and feeling rushed but giving another child life. (5 years on I feel slightly differently. Knowing Jasmines diagnosis should have been clear and failures in comms led to the uncertainty, I would like to be able to think parts of her have saved other children. A gift from her to another child). So we were taken to a side room, to let her go.
I explained I would like all of the lines, cannulas etc to be removed so there was nothing left, and for the ventilator to be removed only right at the very last moment once she was in my arms, so that every second of her passing was right on me.
There was a bit of discussion over wether this was 'possible' as this was not how 'we normally do it,' but then a nice sensible person said of course it was possible and they set about removing all of her wires.
Slowly my lovely little (perfect on the outside still) girl was revealed as all the tapes and wires disappeared.
I warned them that I was going to take off my top because I wanted her to be skin to skin with Mummy for this. If I'd have known this was happening that day I may have chosen a different bra I remember thinking.. bright yellow with hot pink polka dots was not 'occasion appropriate' but then Jasmine would have liked the colours.
The doctors picked her up off the bed and placed her in my arms. I was standing up. Nothing could have prepared me for the shock I got in that moment. She was like a rag doll. You cannot even imagine what this is like unless you have experienced it. It's not like a child in a deep sleep, it's rag doll.
I held her tight, her 'dead weight' another shock, and the ventilator was removed. Then as requested all the clinical staff rushed out the room and shut the door, and left Jeff and I there in the darkened room with her while she slipped away.
It was silent. She did not breathe. We sang to her, the same songs we always sang at bedtime, and we cried.
We kept putting our ears to her chest, her heart did beat for a long time, and then in a moment, it stopped.
She looked perfect. There was nothing gruesome or frightening. Just quiet.
We let a doctor know, who confirmed she was gone, and then we were left with her again.
I washed her, changed her into a fresh nappy, and dressed her into a lovely little white dress, frilly over nappy pants, and white socks. She looked like a sleeping angel.
Then I had to change into 'scrubs' because I had messed up my clothes. It felt a little odd being dressed like a doctor. I wondered if only I had really been a doctor, would any of this happened? I was angry at myself that I hadn't had the skills and knowledge to make her better myself.
Over the next few hours we held her in our arms, and each made 'the phone-calls' to the people we needed to.
The chaplains came to see us. When they saw her lying on the bed, all dressed in white, like a little angel, and invited Jeff and I to say our own prayers for her, they sobbed, loudly and uncontrollably, as I spoke. "Thank you God, thank you for giving me Jazzie, she has been the greatest joy of my life. Help me understand why I couldn't keep her, I need to know.. " Or something along those lines.
The chaplains later told me that they are always moved when a child dies, but rarely do they sob out loud quite so much as they were, she just looked like one of Gods angels.
My Mum and Dad arrived to take us home, and we all spent another couple of hours with Jasmine. I have never, and will never again, see my Dad cry like he did in those hours.
When it was time to go, I asked to be left alone with her.
I laid down beside her, for our last ever sleep next to one another. I was there for a long time before a nurse stirred me by coming in to see if I was ok. I asked her to capture an image of my final time with Jasmine.
Then I asked for scissors. She was naturally concerned as to what I needed these for. I explained, when Jasmine cuddled me she always played with my hair. I needed to put a big slice of my hair in her hand to comfort her, as I couldn't be with her now.
I cut my hair, placed it in her hand, kissed her again, and left the room.
I have never felt so sick in all my life.
The overwhelming physical pain and grief was pushing up from my stomach and from my heart towards my throat, but I wouldn't let it get passed.
I have still, to this day, never let it get passed.
I keep pushing it back down in whatever way possible.
I am afraid that if I let that pain wash over me, I will die. Right there and then. I know my mind and body simply could not survive that pain. And I have to live to fight for the truth for Jasmine, achieve better patient safety for other children in her memory, and to be the best wife and mother I can to my lovely Husband, my precious son Benji, and the new little boy that is growing in my womb.
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