Day 30 and 31 of Sam's FIRES Diary

Wednesday 21 April and Thursday 22 April 2021

Creating Awareness of Febrile Infection Related Epilepsy Syndrome


Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit


Extracts taken from diary and text updates sent to family and friends.


21 April 2021


6am I went to bed early last night, as I was finding it difficult to cope, in fairness I was a mess. I know I need to be strong, but sometimes I just can’t be, and yesterday was one of those days. All I can do is do my best. I just love my son so god dam much, and the pain at seeing him in this horrific condition is just too much to bear sometimes.


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 does make me more tired.


I think I managed around six hours sleep last night. I woke up early 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. Sam’s dad is already on the ward 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. It is only now some nearly three years later, that I realise how much trauma I experienced. It is trauma that I am having to learn to live with, and will never leave me, and it manifests in all sorts of different ways. 


For the benefit of the reader, as a recap an anaesthetic gas called isoflurane is being trialled for 48 hours, we have another 12 hours left. They will slowly be weaning him off his isoflurane gas tonight. 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 his thiopental, a very toxic drug and that it has given his brain a rest from seizures.


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 been steady all night, he has had break through seizures when he had his cares. We think touch and noise is a trigger for some of his seizures so his nurse grouped all of his cares and medication boluses 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 other anti-seizure medication as well, and he is still receiving his phenobarbitone with the aim to get him to super high levels.


2pm I text my close 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 in the states, continues to send through daily recordings of him reading stories for Sam. Todays books are Green Eggs and Ham, and A Camping Spree with Mr Magee. I thank him for his latest story and say that “life feels very very cruel and unfair at the moment”. He replies saying “that’s a pretty fair assessment”.


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


8pm The physiotherapists still comes 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. I do love the physiotherapist team, they are absolutely lovely with Sam and a highlight of my day. 


11pm Once I feel Sam is stable, I say his good night prayers with him, sing him his good night song, tell him how loved he is, and how proud we are of him. I also tell him that we will get through this, and not to worry he just needs to keep fighting.


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

22 April 2021


8am Sam has been taken off his isoflurane anaesthetic gas. He could only remain on it for 48 hours. He is stable currently, but his seizures have returned. I can’t begin to explain how I am feeling, I am utterly broken and petrified to think what is next. So once more a new day is upon us bringing with it more dashed hopes. But our new goal is trying to find a different way to climb that seizure mountain, alongside our gorgeous Sam, who is fighting tooth and nail to climb it.


His medical team has restarted his horrible thiopental, to try and control his seizures again, so it is back to that toxic medication. His CFAM monitor is showing some periods of stability, then seizures for five minutes or so. This is going to develop through the day. The pump and line for the thiopental is currently filling. Sam’s been on his ketogenic diet for around five days now and his ketone levels are increasing, which is good.


Sam's medical team and new consultant are amazing. They have been incredibly caring, and I feel that Sam is in a safe pair of hands. Sam has been moved to a private room so we can have more privacy and we can now start to have family visitors. Incredibly they have also got permission for Daisy to start visiting. They think it will be good for Sam, and also us. In the midst of all this anguish, and whilst we are feeling so incredibly low at this latest turn of events, we have been given a beacon of light. I am blown away by their thoughtfulness and also their professionalism and dedication.   


12pm We are very keen to try cannabis oil now which they are looking into starting. Sam needs his phenobarbitone levels measuring each day. Apparently, his bloods need to be sent to Sheffield Children’s hospital as they don’t do this blood test at QMC. I was surprised to learn that.


2pm Sam started to have family visitors which is nice. We just need to get a bit of order around it so everyone is getting quality time and take it in turns. To prepare Daisy for coming to visit I ask my sister to get her claws clipped. Our lovely vets, PawPrint, managed to squeeze her in. My mum and sister are still continuing to come to Nottingham from Derby twice per day, and have done since Sam was first admitted. It is lovely that now they can also see Sam as well. 


4pm The chaplain visits us every single day. I never realised the importance of their role until Sam was in hospital. They are lovely and I always look forward to their visit. They have this calmness about them which I need, are reassuring and give me hope. We always have a beautiful prayer together, and it is like it gives me a bit of renewed strength for a while.


9pm We have a quiet evening with Sam. Consisting of reading books, listening to stories and messages from family and friends. My next hope is Sam trying cannabidiol, as there are some studies showing some efficacy in helping to reduce seizures, particularly those that are difficult to control. Sam’s critical care consultant and neurologist are already putting things in motion for him to try this. Whilst Sam may be off his isoflurane gas, he is on numerous other medications, plus his ketogenic diet.


Once I feel Sam is stable, I say his good night prayers with him, sing him his good night song, tell him how loved he is, and how proud we are of him. I also tell him that we will get through this, he mustn't worry, he just needs to keep fighting.


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


Day 33 diary update will be out tomorrow. Until then I will leave you with these beautiful words, which could have been written for me...



…And she loved a boy very, very much –

Even more than she loved herself.


Credit: Shel Silverstein


With so much love and thanks,


Sam's mummy