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Beyond the Ceiling of Care

**TRIGGER WARNING** This post is highly sensitive and contains a lot about events surrounding death. It may not be everyone's cup of tea - please read as much or as little as you feel comfortable with. If anyone needs any extra support, or to talk about any of this, please feel free to get in touch with me and Matt, or take a look at CLIC Sargent's list of bereavement resources and organisations, many of whom have helplines. It also details the amazing lengths to which the NHS staff go in these situations, much of which goes unnoticed. I certainly didn't know that their jobs involved any of these beautiful things. That felt important to talk about in these current world circumstances.


To anybody who has lost a child - or anyone close - I hope you can find some comfort in the thoughts and ideas further down. You are brave and incredible.


***

Before we'd even received Rory's cancer diagnosis, when all the professionals still thought it was probably a benign tumour, it had crossed both of our minds that death was potentially on the cards. Brain surgery came with a high mortality risk, which no surgeon shied away from making us understand. Within the space of three weeks, we'd gone from having a healthy little boy to signing a consent form saying that we accepted that his death was a very real possibility.



When Rory not only survived the surgery, but progressed with flying colours, death seemed further away again. It seemed that we'd closed the door on that horror and our minds took a pause from trying to process that. And then we received the news that the tumour was malignant, and suddenly death was back on our horizon. Of course we've known friends and relatives to survive cancer, but our most recent family experience of cancer resulted in death, and I think once that's happened, it's harder to separate the two words. Cancer = death. (Which, of course, it doesn't - please know that!)





Finally, on 26th December, Rory was admitted to PICU with veno-occlusive disease. We were told firmly upon entering PICU that once an oncology patient has entered Intensive Care, it's highly unlikely that they'll leave again. Death crept closer yet again.


Then we were told that while veno-occlusive disease (VOD) is treatable, it has also been widely accepted that it can result in death. We were told that Rory was the sickest child in the hospital. That isn't something to be proud of. It slowly crystallised in our minds that Rory really could die. Death wasn't just something typed on a consent form, it was a dangerously close, tangible reality.


And yet, we fought - at no point do you ever, ever give in to that reality. Ever. You keep fighting for your child until the moment they tell you to stop. We stubbornly dismissed every 'Do Not Resuscitate' conversation, insisting that Rory hadn't finished battling yet. We fought on Rory's behalf with every fibre of our being until Rory made it clear that he didn't want us to fight anymore.


The doctors and nurses discussed a "ceiling of care" with us when we entered PICU. We were talked through every single intervention that was being added to help Rory: the inotropes (which keep your heart working), the ventilator (which keeps your lungs working) and the haemofilter (which keeps your kidneys working). They patiently explained how much each was doing currently, how the team monitored their effect and how they might alter various doses and settings to encourage Rory to work on his own. Crucially, they discussed the levels to which they could escalate each element of support and the point at which they could do no more. This is the "ceiling of care".


Rory got fairly close to the ceiling of care in his first week in PICU, but then made good strides towards doing things on his own again. All the interventions, which had been quickly escalated on Boxing Day, reduced gradually, and by 6th January Rory was extubated and off the haemofilter. Things were looking really positive. The ward sister in charge that evening even sent Matt and I out to have a few drinks because we'd soon be back on full-time parenting duty (parents can't stay in PICU overnight).


But VOD had other ideas. We got a call from Rory's nurse at 4:26am on 7th January to say that his blood gas tests had been getting worse and the consultant on duty was preparing to re-intubate. Over the next four days, Rory's interventions rose and rose, while his blood gas tests, his blood pressure and his sats (oxygen saturation) looked bleaker and bleaker. On 11th January, Rory suffered a pneumothorax (some air escaped from his lung and gathered near his heart) and it was made clear to us that we'd reached that ceiling of care. As Matt said at the Celebration, Rory was "in there waving his hands around going 'guys, I can’t do this anymore'." We'd always agreed with the team that we would avoid, if at all possible, Rory ending up in an arrest situation where we potentially couldn't be in the room. We didn't want this to be the end, but if it had to be, we wanted it to be graceful and peaceful, and achieving grace and dignity for Rory meant taking some horrendously difficult decisions.


We were lucky to have mostly the same 9-10 nurses throughout Rory's PICU stay. We could spend almost an entire 12-hour shift with Rory's 2-nurse team, and to have familiar faces was a blessing, as well as being safe in the knowledge that they knew Rory really well - even an unconscious Rory. Every single nurse was caring, considerate, efficient, overwhelmingly knowledgable and had the uncanny ability to make us laugh even in the darkest of moments. They took the time to chat to us and chat to Rory, teaching us how to give Rory non-nutritive feeds, how to massage him, how to move him when he was hooked up to so many machines, how to do skin-care, how to do mouth-care, how to change his nappy while he was sedated.


One particular nurse, who I shall call Lily for the sake of privacy, had spent a lot of shifts with us and Rory, including a very emotional New Year's Eve. She was due to go on annual leave on 11th January, but she expressed concern that she hadn't seen anyone on the rota who had cared for Rory before, and insisted that she'd sacrifice her leave and come in if no one else could cover. I woke up (from Rory's bed - see below!) on the morning of 11th January, and there she was. Lily had given up her first day of annual leave because she was more concerned about Rory. And there was no one else more perfect to see us through that awful day.


Here follows a list of everything that made Rory's "ceiling of care" and the practicalities surrounding his death that much easier. I've sorted and summarised the following in an effort (I hope!) to make it slightly more useful reading. If you ever find yourself in this situation, firstly, I'm so sorry - I am here to listen and talk. Secondly, please feel free to use this list below for inspiration. I don't regret a single moment of how we handled Rory's death, with each other and with the hospital. I know that it can't always be this way, but I wish that every bereaved parent could take such comfort in their experience.


Nurses - having the best people around you

Lily, and the two other nurses who arrived to help during the evening of Rory's death, who I shall call Bea and Roxy, were phenomenal. As were both of Rory's ward sisters that day. When it became apparent that 11th January would be our last day with Rory, Lily wheeled in the "bereaved family" trolley (not a good sign!) and spent a good few hours helping us to take Rory's hand and foot prints in paint and in molds to plaster-cast. Roxy plied Matt and I with tea and toast and made sure we kept eating. Bea and Lily came to the consultant meetings with us, they cried with us and held our hands. Roxy, a mum herself, gave the best hugs ever. Lily had begun her shift at 7:30am and she didn't leave until well after Rory died, at gone 10pm. And she was the one who was supposed to be on annual leave.


The Bed

Once it became clear that Rory was declining, our clinical nurse specialist and our CLIC Sargent nurse made it their mission to swap Rory's cot for a full-size bed that Matt and I could get into too. The most precarious operation ensued, involving both Matt and I, 6 nurses, a doctor and a consultant peering nervously through the window while we transferred Rory from cot to bed without entangling or disconnecting any of his tubes or lines. The challenge was SO WORTHWHILE. Matt and I were fighting over who could get their shoes off first to get into the bed and wrap themselves around our boy. During Rory's final moments, we both managed to lie on the bed curled around either side of him, with one of Rory's hands on Matt's face and the other on my boob (very important to Rory). The most precious feeling in the world.


Music

Matt and I are both musicians and music is a massive part of our lives. The nurses made sure that music was playing in Rory's room throughout his PICU stay and the fantastic music therapist from Starlight Ward visited Rory in PICU a number of times. She let Matt and I play to Rory, and even strategically "accidentally left behind" an instrument on her final visit in order that we could play Rory a live instrument. We wanted a particular piece of music (the Chopin Nocturne you may have heard at the Celebration) to play Rory off to sleep and I got ridiculously stressed about finding it. Bea took the iPad from me, calmed me down and made sure the right piece played, on repeat, until we asked her to fade it out.


Decoration & incense

On a similar note, the CLIC Sargent team brought in a special "end of life" care pack which included an incense vaporiser, a speaker and faux candles. The nurses had helped us to make some bunting with Rory's name on it and laminated it for us. We were encouraged to decorate his bed and every nurse made sure they knew the name of all of Rory's toys, placing them lovingly in different positions every time we moved Rory. I was so scared that PICU was the worst environment for Rory to die in - so distant from anything I'd imagined, but actually, the room was something quite special.


Reiki

The oncology Reiki practitioner, funded by the Grand Appeal, visited Rory in PICU too. She listened carefully to the specifics of his illness and focussed her attention there. She brought a whole new level of peace to the room. As well as the most amazing lavender scent wherever she went...


Arts & crafts

As I mentioned before, taking Rory's hand and foot prints was really special. We have a few paint versions, one special print version (courtesy of the charity Sands) and a number of plaster casts, which we keep in his cot and handle daily. Rory's closest family also all have sterling silver pendants each with an individual finger print, done by a fantastic forensic jeweller after Rory's death (I'm always wearing it - please ask to see it if you're interested, I love to show it off). We also, in time, intend to use Rory's hair and some of his ashes to put into a ring. My mum and I both have (different) tattoos in memory of Rory - again, please ask to see!


Talking & singing

Matt and I, and our closest family, kept talking to Rory all the time. We sang to him and read to him whenever we could - the nurses in Rory's room must be sick of Karine Polwart songs and A. A. Milne. Before the consultants switched Rory's life support off, I read him the final story of the House at Pooh Corner, which you may have heard at Rory's Celebration of Life. Even beyond Rory's death, we talk and sing to him all the time. A friend kindly gave me a special notebook so I can write to Rory too. It doesn't make things infinitely better, but it definitely helps.


The final moments - just ask: it might be possible

We were adamant that while the end of Rory's life might be traumatic for us, it shouldn't be so for him. If us taking those impossible decisions and bearing that pain meant that he didn't have to, that's the first rule of being a parent, right? We agreed with the two consultants on shift that the end should be as dignified as possible and one of them warned us that when stopping a patient's ventilator, some fluid can escape from their mouth (especially when the patient's lungs are fluid overloaded as Rory's were). This really upset us and we asked if there was anything they could possibly do to avoid this. The consultants pondered for a bit and concluded that if they used CPAP (continuous positive airway pressure) to maintain some pressure down Rory's ventilator tube, it might potentially make the switch-off calmer and slightly less gruesome. They warned us that this was unorthodox and they'd not tried it before, so not to be disappointed if the machine suddenly sounded all its alarms, but we all agreed that it was worth a shot. We were given as much time as we needed with Rory and the consultant took the cue to switch off the ventilator from us. The way they orchestrated the final moments was perfect: there was no horrible transition or anything mechanical about it, Rory just slipped gently from life into death. The consultant sat with us and held Matt's shoulder. We couldn't have asked for anything more overflowing with care and respect.


Washing and dressing Rory

After Rory had died, Bea and the consultant in charge asked Matt and I to step outside so that they could extract Rory's ventilation tube and various other lines which had been inserted into his neck, thighs and wrists. Once that was done, Bea invited us back in and Matt and I washed Rory gently all over with warm, soapy water while Bea washed and combed his hair. Matt and I chose a baby grow that we wanted Rory to stay in, and a hat that my mum had knitted, and dressed him one last time.


Carrying Rory to The Rainbow Room

Matt chose to carry Rory downstairs to BRHC's Rainbow Room after he died. The Rainbow Room is a calm little haven of a room next to the hospital's mortuary where parents are invited to sit with their child's body for as long, and as often, as they wish. We went in a little procession with Bea and Roxy through PICU, where all of the cubicle curtains had been drawn out of respect, and down through the corridors, Rory cradled in Matt's arms, and Rory's toys - Freddie the Fox, Ollie the Octopus and Terry the Triceratops - cradled in mine. We laid Rory out peacefully, snuggled in his quilt and surrounded by his friends. We visited the Rainbow Room twice after Rory's death. We talked to him, played him more music and spent some time writing about him together. Perhaps I'll talk about this in more detail another time. We left Ollie and Freddie with Rory, but we kept Terry safe with us.


Preparing the body

I think this shocked me the most. Each time we asked to visit Rory in the Rainbow Room, a different couple of nurses went in to prepare his body. This involved fetching him from the mortuary and laying him out on the bed, surrounded by his toys. I cannot believe that this is part of their job: I am genuinely humbled. But of course it is! Someone has to do this, but why would any lay person even think about it? Those nurses and doctors have strength like no other.


Communication

Matt and I were both offered psychological help whilst in PICU, which is still ongoing and has been invaluable. In my first session, a few days before Rory died, and when it had become apparent that things were not improving, I absolutely fell apart. I confessed to my psychologist that one of my most upsetting fears was having to push his empty pushchair across the city back to our flat - I just couldn't bear the thought. And if I couldn't do it, I couldn't possibly imagine Matt doing it either, or asking any of Rory's grandparents to do it. When we sat down with the PICU consultants on 11th January, one of them reassured me that they would find a way to get the pushchair home for us. I was moved and astounded. I couldn't believe that this much attention to detail had been considered by our entire team and that every one of our doubts and fears had been communicated so thoughtfully. We also asked to see someone from Rory's oncology team that evening, and sure enough, Rory's consultant oncologist came in on his Saturday night off to say goodbye to Rory and have a cry with all of us. Make sure you say these things: people care.


Celebration of Life & Rory's ashes

For Matt and I, everything about Rory's cremation and subsequent Celebration of Life was perfect and absolutely what we needed. But that's for another post, another time. If you missed the ceremony, you can read the text and hear the music here. We kept some of the beautiful flowers from his Celebration and pressed a few of them to hang in a frame our bedroom. For now, we keep Rory's ashes in his cot next to our bed, Terry the Triceratops sat on top of them, and that's perfect too. It feels like he's next to us all the time and it makes it really easy to talk and sing to him, as I mentioned above. Contrary to what you may imagine, looking over at Rory's ashes gets me out of bed every morning. I live every day for Rory.

***


Congratulations if you've read through all of this. I hope it wasn't too heavy-going and that you've found as much comfort in reading as I did in writing this. Please be assured that there is a lot of positivity in there. Take care of yourselves and your loved ones.


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