Day 9 of Sam in Paediatric Critical Care

Location: Nottingham QMC, Paediatric Critical Care Unit

Date: Tuesday 30 March 2021

A Mother's FIRES* Diary

*Febrile Infection Related Epilepsy Syndrome

Sam remains in an induced coma, as doctors fight to stop the relentless seizures that came out of nowhere after what appeared to be a routine virus.

8am: I got to bed around midnight last night. I woke up feeling incredibly anxious. I actually dread waking up as I am so terrified to hear Sam hasn’t improved, or even he has got worse. It is like being on a roller coaster. I did my usual routine of phoning Sam’s dad who was already on the ward (as he does the earlies and I do the lates) to see how he is. Once I find out I begin to breath. Sam’s status can change so quickly, literally from hour to hour.

There has been no real change overnight - Sam his brain patterns seem fairly stable for now. But it could change in an instant. The only certainty with what Sam is facing is uncertainty.

11am: We have just had a long chat to one of Sam’s consultants about his MRI results from yesterday. His medical team are busy making a plan for him. The priority is we need to somehow get control over his seizures urgently, and there are a number of other interventions for them to try. The urgency is increasing due to the damage being done to Sam’s brain and they are now considering interventions which they wouldn’t have done previously e.g. Anakinra. This is used to try and calm down an overactive immune systems which they think is the underlying cause of his seizures. Everyone is thinking outside of the box and it is up to Sam’s neurology team to pull it altogether.

Much more importantly for me, they gave me and Sam’s dad reassurance that they are doing all they can for him and are NOT giving up.

I can‘t begin to explain how much I needed to hear this. I have become obsessed about people giving up on Sam because he is so poorly and he is proving difficult to treat. This has made me step up into mama bear mode of protecting her cub.

I need to feel everybody is 100% committed to finding a cure for Sam. If I feel anyone is a bit negative, then I am all over it. It is this mother instinct, it just kicks in. My whole world is lying in that bed, and my heart feels like it is being stamped on every single second of every single day. Sometimes it is hard to breath for the pain. I feel so incredibly desperate and the pain at seeing Sam fighting for his life, well it is indescribable. As a parent seeing you child so poorly makes you feel so powerless and helpless. I feel like screaming “please can someone just make him better”.

For me, sometimes it feels there is a bit too much emphasis on how critically ill Sam is.

I am not being critical of anyone; it is just how I feel. I don’t want to keep hearing that Sam is in a critical condition, trust me I understand how ill he is, I am not in denial. I just need to cling onto hope and positivity, or I will seriously go out of my mind, and I won’t be able to get up in the morning.

But what has really struck a chord with me is today the consultant said that they believe our love for Sam and being there for him really does help him. I could of cried when they said this.

6pm: I am very grateful that the hospital chaplain visits every day. They are a great support to me and I am not sure where I would be without them. We gather round Sam’s bed when they visit and have a prayer. They speak such words of wisdom and help me to refocus, recharge and be more positive. They have given me a bible and a wooden cross.

As usual the physio team visited twice today. And as usual they were brilliant. I always feel less anxious once they have visited as Sam’s breathing always seems to improve. And I just love the way they interact with him. Not only do they help Sam, they inadvertently help me too.

10pm: Sam now has a lung infection and the antibiotics seem to have helped, alongside the amazing physio team working their miracles. I have been reading to Sam lots today and he also has his Tonibox on with Julia Donaldson stories. I am not too sure how much he can hear as he has ear plugs in and also ear defenders on, but I just hope he can hear my voice and the Tonibox.

Another thing that is so horrible about this condition is we can’t even cuddle or hold his hand as we think his seizures get worse if he is touched.

Sam has had lots of seizure activity which shows clinically in his arms, hands and feet, they look like little twitches all the time. I have been videoing them for his neuro team. We also take lots of photos of his brain wave monitoring (it is on a computer screen next to his bed) so we can compare.

Sam has had his first dose of Anakinra, and I am praying so hard that this will work. But I am actually frightened to get my hopes up as I am fearful of the pain and despair I will feel should it not work. They believe that Sam’s seizure activity has improved since his midazolam has been increased to maximum levels, BUT he is not where they need him to be - and time is of the essence. They are therefore going to also reintroduce the TOXIC and HORRIBLE Thiopentone which gave Sam total brain suppression previously e.g. flat line of brave waves. But, because of its toxicity he was taken off it, but they are going to reintroduce it alongside his midazolam in case this is the magic combination he needs and time is running out. We MUST gain control of his seizures. 

My mum, sister and Daisy (Sam’s black labrador) came as usual today, both afternoon and evening. And as usual we met them in the carpark. We generally sit in the boot of my sister’s car. They bring sandwiches with them and a flask of coffee. Most of the time I can’t even talk, or eat.

I am grateful for Sam’s dad being able to retain all the drug information. Whilst I am very much an active participant in all of the consultant rounds etc, I am also focused on Sam’s daily cares and ensuring everyone is fully committed to finding a cure. It feels like I have this inbuilt antennae which alerts me if anyone in his team is not as positive as they need to be. I am also getting to understand and know all of Sam’s hourly stats so I can highlight any red flags.

To be honest I have struggled today and have cried a lot, in pure desperation and fear for my boy. The news from the MRI has floored me, and I am in shock thinking my beautiful boy has some brain damage already. I am going to bed feeling exhausted, desperate, upset and in despair. As usual I will pray so hard tonight for Sam and to give me strength for tomorrow.

 Day 10 diary update will be out shortly. Until then I will leave you with this...

 When life gets challenging and I feel overwhelmed, I remind myself the most beautiful soul in heaven, Still calls me his mummy.

Instagram Credit: Grief to Glorious Unfolding

A photo of Sam and his precious girl Daisy, in March 2021, a few weeks before he fell ill, with his first ever seizure.

Sam's 24 hour brain wave monitoring whilst he was in an induced coma at Nottingham QMC fighting FIRES - March 2021

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 🩷