Day 6 of Sam in Paediatric Critical Care
- 1 day ago
- 5 min read
Location: Nottingham QMC, Paediatric Critical Care Unit
Saturday 27 March 2021
A Mother's FIRES* Diary
*Febrile Infection Related Epilepsy Syndrome
12pm: I can’t believe we have been here five days already, although it feels like we have been here for weeks. This time last week we thought Sam just had a routine virus. In the space of a week he is now fighting for his life in an induced coma. Not only are the medical teams struggling to understand what has happened - more importantly they are struggling to stop it. And I am struggling to cope with all of this.
Sam’s lovely night shift nurse clearly worked non-stop. He has fresh sheets, a clean gown, and his central line has been redressed. I was so impressed with her - she is everything I would want from a nurse. Not only do nurses need to be technically competent, and I can’t begin to explain how much they have to do - the level of responsibility they have blows my mind, as in a nutshell they are keeping my son alive. But they also need to be gentle, caring, kind and compassionate.
I really value the way the nurses interact with Sam. They speak to him as though he is awake. The difference in my anxiety levels is immense when I feel the nurse looking after Sam ticks all these boxes. It is so important for me to see gentleness and engagement towards him.
I also really value continuity in Sam’s care. I find it very stressful when a new nurse cares for Sam. It is so hard to trust someone I have never met before with looking after my son - he is my entire world. I just need to feel that everyone involved in Sam’s care cares about him. Maybe that is unrealistic and unfair, but it is what I want to see. In a very short space of time I have realised what a vital role nurses play in critical care - from keeping your child alive to managing the parent.
The medical team are still trying to gradually reduce Sam’s medication so he can have his MRI on Monday. The MRI can only support a certain number of medications and they can’t have any metal components in them. It’s going to be challenging for this to go ahead, but we are desperate for it to happen. We need to know what is going on inside his head - it may finally give us some answers.
They are slowly reducing things like his midazolam and adrenaline. The midazolam lowers his blood pressure, so they need adrenaline to increase it. Everything is such a fine balancing act. He is on very high doses of midazolam to suppress his seizures, and whilst that initially worked on Wednesday and Thursday, it stopped working yesterday.
Sam is also being regularly turned to prevent pressure sores.
4pm: All in all, everything is a bit rubbish today. His seizures have increased, and he now has issues with his blood levels such as sugars and potassium. They have stopped his antivirals and have now moved to steroids, which will help his blood pressure, kidneys and liver function, and also try to dampen down his immune system, which they think is at the heart of his seizure activity.
Sam received his first dose of steroids a couple of hours ago. It’s a three-day course and they have a cumulative effect, so the maximum impact will be felt on day three (Monday/Tuesday). These steroids are incredibly strong — something like 30 times the normal dose. To put it into perspective, Sam is on 30 milligrams per kilogram of body weight, whereas normally they use 1 milligram per kilogram.
Sam has electrodes on his head to monitor his brain waves. They are continuing to show seizure activity every few minutes lasting between 20 and 30 seconds. There are a lot of discussions about Sam’s treatment happening in the background. They are not sure why his seizures have increased. I wonder whether it is because a medication was stopped that they thought wasn’t working, but maybe it was doing more than we realised? Maybe the move from isolation to the main ward hasn’t helped. We just don’t know.
This is just torture. So many unknowns. All we want is stability and to hear the words, “This treatment will stop his seizures,” and that this horrific nightmare will stop. But no one can give me that reassurance, and no one can comfort me that Sam is going to be ok.
We had Daisy hugs this afternoon and we will again soon. (note to reader - Daisy is Sam's black labrador.) It is so lovely to be able to hug her. I am so glad that my mum and sister bring her with them every day. Poor Daisy must be wondering what is happening. She has no idea the comfort she brings to me and Sam’s dad.
23:00: We have the same nurse on tonight as last night, which is lovely as I thought she was wonderful. I am with Sam now, just quietly sitting by his bedside watching him. He has a slightly elevated temperature but he is about to be given paracetamol.
They seem to have sorted out his electrolytes, as his cheeks are looking a lot better. Sam had an x-ray to check his feeding tube is in the right place in his lower intestine this time, so they have restarted his feeds.
They tested him with some more feed in his feeding tube and he seems to have tolerated it, which he hasn’t before. So everything crossed that this continues as he needs some nutrients.
My brother sent me an article on a girl in America who had 31 days of seizures - a very similar story to Sam - and she survived. I think Sam may be on a similar treatment protocol. I showed it to the neurologist and they were interested. It still feels like a waiting game, and I have everything crossed that the steroids start to make a difference.
More diary updates will be released this week. But for now, I will leave you with this beautiful thought…
After losing them, it may feel like we have nothing left to fight for and no more purpose. But, keeping their memory alive and telling their story is one of the most important things we will ever do.
Instagram Credit: Grief to Glorious Unfolding
Thank you for reading. Every read of Sam’s FIRES diary helps to raise awareness of this devastating condition, to show the reality of what families go through, and to explain why research and support for families facing the unimaginable are so desperately needed.
There is currently no cure for NORSE and FIRES, no consistently effective treatment, and the cause is still not fully understood. Around one in five people do not survive the acute stage. While recovery is possible, many survivors are left with significant lifelong neurological disability, chronic epilepsy, and complex care needs.
Five year old Sam was a healthy, happy and loving little boy from Derby in the UK. He was rarely ill. Just after his fifth birthday, on 22 March 2021 at 8pm, the fight of our lives began when Sam had his first ever seizure after what appeared to be a routine viral illness, and our world changed forever.
With love and thanks,
Sam's mummy 🩷
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