Day 30 of Sam in Paediatric Critical Care

Location: Nottingham QMC, Paediatric Critical Care Unit

Date: Wednesday 21 April 2021

 A Mother's FIRES* Diary

*Febrile Infection Related Epilepsy Syndrome

Day 30 of Sam being in an induced coma, as doctors fight to stop his relentless seizures. They came out of nowhere after what appeared to be a mild virus.

6am: I went to bed early last night, as I was finding it difficult to cope - I was an utter mess. I need to be strong for Sam, but sometimes it feels impossible, and yesterday was one of those days. I love my son so god dam much, and the pain at seeing him in this horrific condition is just too much to bear sometimes – it is like my heart is being continually stabbed – and I can barely breath.

I am still in disbelief at what has happened. How can my healthy, happy child suddenly be fighting for his life from a condition I had never even heard of? It is every parent’s worst nightmare — except it’s one people don’t even know exists.

Yesterday I was mentally and physically exhausted. Sam’s dad is having to do some remote work now from the hospital, so I have been doing a couple of days on my own and I think it is making me utterly exhausted. I managed around six hours sleep last night.

I woke up at 5am, and as usual I find waking up incredibly difficult. Sleeping is my only respite from this nightmare. On waking, I remember the utter nightmare we are in, and my heart starts to race and my adrenalin starts to pump, I feel sick and just want to cry. Sam’s dad is already on the ward so he can see him before he starts work. As soon as I open my eyes, I read his detailed text update that he has sent out to family and then I phone him. My hands are shaking as I read the text update, please, please, please let Sam’s seizures have stopped, let the isoflurane gas have worked.

Sam has been put on an anaesthetic gas called isoflurane – he can only be on it for 48 hours - we have another 12 hours left. He has a gigantic anaesthetic machine by his bed that delivers gas via his vent tube. It actually starts as a liquid anaesthetic which goes into an AnaConda device fitted to his breathing tube where it is vaporized into gas which Sam then breathes in. Sam has been put on this as his consultant spoke to a colleague in another hospital who had success with it. I feel it is our last hope as nothing else is working.

Sam has now been in an induced coma trying to stop his continuous seizures now for 30 days. His medical team has tried every medication, treatment they possibly can but nothing is working. The aim of his treatment is to try and stop all brain activity, in the hope to rest his brain. But despite the extraordinarily and multiple high levels of anti-seizure medications, anaesthetics and immune modulating treatments nothing is working. He is still having seizure activity.

As we only have 12 hours left of his isoflurane gas treatment left they will slowly wean him off it this evening. I have so much ‘hidden’ hope riding on this treatment. The signs are all good, he had brain suppression straight away i.e. a flat line of brain waves, but we are getting some small break through seizures…my worst fear.

Whatever is the outcome of the isoflurane gas, I am thankful that is has allowed us to take a break from thiopental. It is a very toxic drug so isoflurane has given his brain and body a rest from this.

8am Myself and Sam’s dad do a handover. I will let him know when ward rounds start so he can come back to the ward. Sam has had steady all night, he has had break through seizures when he had his nurses cares. We think touch and noise is a trigger for some of his seizures so his nurse grouped all of his cares and medication changes to try and minimise the number of times she was touching Sam.

Sam’s blood pressure and vials are stable. Just after midnight he had some seizure bursts but this was sorted by increasing his isoflurane gas level. His team want him to be in the range of 1.2 to 1.4. Sam also had his many anti-seizure medication as well, and he is still receiving his phenobarbitone with the aim to get it to super high levels.

2pm I text my best friend Becky and ask if she could do a little video or voice note for Sam, about happy memories she has of him and what he can look forward to in the future. I also mention that perhaps Holly (her daughter and Sam’s friend) could also do something as well so he can hear her voice. Our consultant thought it may be useful. I ask her to mention it to our other friends as well.

4pm My brother who lives in America, continues to send through daily recordings of him reading stories for Sam. I thank him for his latest story and say “life feels so very very cruel”. He replies saying “that’s a pretty fair assessment”.

I am continuing to read to Sam and I am so glad I ordered some proper story books for him. We finished The Magic Faraway Tree and now onto the Wishing Chair by Enid Blyton. It is one of the things that I love doing for him. I also get involved in washing him, moisturising his body, changing his nappy and taking the glue out of hair from where the electrodes get stuck on his scalp. He has his electrodes changed every few days, and the glue is a nightmare to get out of his hair. But I like doing it. I take my time, and I don’t think it is quick enough.

8pm The physiotherapist still come twice a day to assess Sam and carry out respiratory activities for him. They also check his skin for pressure points, and his mobility in his joints. I am pleased that they have said his skin is in really good condition, as I have religiously been liberally putting his Child’s Farm Moisturiser on, and clearly it is working. They are also happy with his range of movement in his feet as well, and they show me exercises I can do to help him.

Once I feel Sam is stable, I say his good night prayers with him, and sing him his good night song. I remind him how loved he is, how proud we are of him and that we will get through this – he mustn’t worry he just needs to keep fighting. Mama bear will never ever leave him.

As like every night, I will myself to sleep by praying so hard for Sam to have a brighter day tomorrow. 

Our next diary update will be out shortly. Until then I will leave you with this...

And she loved a boy very, very much – Even more than she loved herself.

 Shel Silverstein

💥WHY WE ARE SHARING THESE DIARIES💥

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 mama bear 🩷

A photo of Sam in 2020 trying out his new bike.

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