Day 9 of Sam's FIRES Diary
Tuesday 31 March 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit


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


11am As usual I woke up feeling incredibly anxious. I feel I am in a permanent state of high-level anxiety. Whilst Sam had a stable night there is no real improvement in his seizures. He has had an EEG (for the benefit of those reading, this is where small sensors are attached to his scalp to record the electrical signals produced by the brain). Sam also has continuous monitoring of his brain waves via the CFAM (cerebral function analysing monitor) as well. The CFAM allows trends to be observed and real time monitoring of brain and seizures activity which guides decision making. It is particularly useful for capturing those seizures that we can’t see as they are subclinical.


We had another chat with his neurology consultant this morning. He is still undergoing his therapeutic hyperthermia and they are slowly reducing his body temperature to 34. Any lower and it will cause issues such as blood clots, so he has to be carefully monitored. What is really strange is that I have noticed is his hands and feet are still warm even at a low temperature.


Sam had his second dose of anakinra today. They are also now also looking at starting Plasma Exchange (where any harmful antibodies are removed from his plasma as they may be causing his seizures and IVIg (intravenous immunoglobin therapy which helps to normalize a compromised immune system and dampens down the inflammatory impacts of an immune response, thus reduce his seizures). For anyone reading this, please remember this is my layman understanding of this treatments.


They are trying to get Sam’s vitals in a good space before moving onto these additional therapies. He is on so many medications, at extremely high levels, and which have significant side effects so it is a really fine balancing act to keep Sam stable. He has eight lines going into his tiny body, he is maxed out on meds, it is scary. The nurses caring for Sam are kept so busy with all his meds that need continually making up all his continuous monitoring, he is very complex. I am so proud of Sam, he is fighting so hard.


Today he has officially been given the category of FIRES. It had been talked about, but now it is official.  


12pm I have had to nip off the ward for a bit, as I am struggling and I need to pull myself together. It is not fair on Sam to have a blubbering wreck of a mother. I am giving myself a strict talking to. I am hoping the seizures which just stop the way they began. Time just isn’t on our side and we need to protect his brain. I keep oscillating between being strong and then utter despair. I cannot begin to explain how terrified I am, I have never ever felt a fear like it.


Can you imagine just for one second what it is like having your previously healthy child suddenly needing to be placed into an induced coma due to having non-stop life-threatening seizures that are damaging their brain caused by something that we know nothing about and we don’t know how to stop? This is the stuff of utter nightmares.

4pm Sam’s friend Holly sent him a card and photo today. Holly’s mum picked the photo as they looked cheeky on it. Holly also chose two books for Sam and said he would like them as one has a train in it and the other is funny as it has pants in it. She knows my boy well!  It is so thoughtful, it made me cry. I have put the card and picture in the middle of Sam’s bunting above his bed.


9pm Sam started his ketogenic diet today around 5pm. I am hoping that alongside the anakinra it will make a real difference for him. The plasma exchange will probably start on Sunday. The anakinra will initially be given for five days, but they may run it longer once they have got some more advice.


I have been receiving beautiful video messages from his school friends and stories. Paige sent through a video of the alphabet to make sure Sam didn’t forget it! Jack sent through a video of his mummy reading ‘How to Catch a Star’. The other day Sam’s wonderful teacher sent through a video of class story time. It was utterly beautiful, Sam adored Mrs Allen. It is so lovely to receive these videos and it is deeply appreciated. Amanda is doing an amazing job of being the coordinator between me and school.


10pm My sister and mum are starting to bring dinner as well as lunch for me and Sam’s dad so we don’t need to eat in the hospital restaurant. Bless them, they cook a hot meal and bring is straight over and we eat it in the car. We are very grateful that they come twice a day and we are also getting our Daisy cuddles.


I am having a cup of tea whilst reading to Sam tonight. I feel a bit more peaceful. Sam’s Lion class teacher, Mrs Allen, has sent some easter gifts for him, she said she couldn’t not include him, and that means so much. He got a handmade card, an easter egg, Malteser bunny and a sunflower seed.


There is a fab team on tonight; nurse, sister and doctors. Not only are they brilliant at their jobs but I feel they are very caring and compassionate as well. This gives me confidence to leave Sam and grab some sleep. I go to sleep praying for a miracle to happen overnight.


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

What if,

When you feel like giving up, they whisper to our heart from heaven,

“But your work isn’t over, you need to keep going,

And when it is finished, I will be here waiting for you”

Instagram Credit: Grief to Glorious Unfolding

With love and thank you for your continued support.

Sam's mummy <3