Day 2 - Sam's FIRES Diary
- 2 days ago
- 4 min read
Written with love by Sam's mum, Rachel
13:00 – Sam arrives at Nottingham QMC Paediatric Critical Care Unit (PCCU)
Sam is settled at PCCU at QMC. He has his own room as they are unsure if he is infectious. They are trying to find out why it has happened. They are doing a lumbar puncture to rule out meningitis and PIMS which is related to covid. We saw the consultant and they gave us lots of reassurance. They said there is a huge protocol of anti-seizure medication to give Sam, so try not to worry. I have to say we felt very relieved, it did make us feel a bit better.
20:30 – Sam is in good hands
Sam is having amazing care, and the nurses and doctors are out of this world. I had a melt down this afternoon - I just couldn’t cope with it all, but I am feeling a bit stronger now after talking to Becky. Sam is still in a coma, and they are trying to control his seizures. He has an MRI scan booked to try and understand what the cause of his seizures is.
Sam is having a CFAM connected tonight. This will mean Sam has electrodes stuck to his head which will connect to a computer and monitor in his room. They will monitor his brain wave activity, so we can see his brain waves and they will show each time he has a seizure. He is still having seizures but the team are upping his medication each time he has one.
20:41 - Texts to my friend, Becky
Me: Thanks for listening earlier, I feel a lot calmer.
Friend: You can call me anytime day or night. You are the best mum, and don’t ever think otherwise. You have the doctors there and they will look after Sam.
Friend: Has there been any change? Have any of Sam’s tests come back?
Me: Not really, I am hoping he will have a settled night.
Friend: I hope so. Try to get some sleep too, you must be exhausted. I’m here if you need anything or to talk.
21:45 – Texts to my friend, Amanda
Friend: Sam’s teacher has messaged asking if I knew how Sam was doing. But I don’t really want to divulge without your say to lovely.
Me: Absolutely its fine Amanda. Sam is having a CFAM attached to his head this evening to try and understand his seizures. He is still having mini seizures, but they are upping and changing medications each time. Thanks for everything Amanda.
Friend: I don’t want to pester you Rachel and bombard you with messages so if it gets too much please say. You have so so much to deal with. I hope they get on top of his seizures and his scan is ok.
Me: You are not in the slightest. He keeps seizing Amanda, they are trying out so many different medications. He has been seizing for over 40 minutes. I am out of my mind with worry.
Friend: Just think he has got the best possible specialists around him trying to stabilise him Rachel. I am so sorry I can’t say anything to make it all better. I just want to take you both back to Friday when everything was normal. Biggest hugs, try to keep strong although easier said than done.
23:30 – They can’t seem to stop Sam’s seizures
There is a big team caring for Sam, and there almost seems to be a frantic level of activity around him – not in a panicked way, but in an urgent way. They can’t seem to stop Sam’s seizures. He has got so many lines going into his tiny body, so many boluses of medications, my heart is actually breaking. All I can do is cry. I am trying not to as I know I need to be there for Sam. But it seems impossible not to. I am petrified that they won't be able to stop Sam's seizures - the pain at seeing him like this is too great. And no-one seems to be able to tell me why he is having them.
There seems to be alarms going off the time. Every time one goes off I jump and immediately think what is wrong. I want to shout out loud, you need to make him better – Sam is the most special little boy, you have to make him better – stop at nothing.
This is my worst nightmare, I can’t cope. I am beside myself. His team keep trying different medications, but they are not working. He has been seizing for over 40 minutes now. I am out of my mind with worry. I am so frightened, I have never felt a fear like it, I feel sick. What is going on? I am praying so hard, I am pleading with God to make this all go away. I promise I will be a better person, a better mother, please just save my son…
More diary updates will be released this week. But for now, I will leave you with this beautiful thought…
In the morning as the sun comes up, they whisper to our hearts from heaven, “I am with you every step of the way”
(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.
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.
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