Day 4 of Sam's FIRES Diary
- Friday 26 March 20216

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

2.30pm My brother has sent over a video of a story he has read for Sam with, called “The Day the Crayons Quit” and a video message from his cousins. Such a fab idea as he can’t come over due to Covid (he lives in America). It was brilliantly read, and I know Sam will love it! It made me smile and laugh and was just what we all needed! Sam adores his uncle Gareth he talks about him a lot. Heartbreakingly Sam only asked last week if we could go and visit them in the winter soon (they live in Denver) <3 I promise him we will.


My mum, sister and Daisy are visiting twice a day, afternoon and evening. They can't come into critical care, we go and meet them in the car park for half an hour, sit in the car and give them an update. It is literally just outside the east entrance to QMC.I don't mind meeting them their as it is only five mins from the ward. 


Struggling this afternoon. We have spoken to Sam’s Paediatric Neurologist Consultant and he is not where he thought he should be. They reduced his meds overnight, but his seizures increased. His seizure activity is still a problem. Basically, he is now past the stage of where they want to stop his seizures as quickly as possible, which is what they normally do. They are going to try longer term meds. They want to try and go for an MRI on Monday, but they still need to reduce his meds before they can take him. We are still non the wiser what has caused his seizures. Sam is having more tests, such as DNA, but we may never know. Apparently the lumbar puncture doesn’t pick up all meningitis. So it is a bit of a stale mate. Devastatingly the seizures have got worse in severity, but he said there is still hope, which I am desperately clinging on to.


10pm Sam has been moved from his isolation room to the main part of the critical care unit. It is in sections and he is in the end section with one other person. There are some windows in this section which is good. We have settled into his new bed spot well, there is just less room than where he was before. Sam is still having continuous bursts of seizure activity so much of the same from this afternoon. An MRI has now been booked for Monday so I am just hoping he stabilizes enough for it.


We are lucky that Jim and myself are allowed to sit with Sam at the same time. Due to covid restrictions, apparently there should only be one parent at once. The team think I have bad anxiety so are allowing us to visit at the same time. In fairness, wouldn’t any mum have anxiety if their child was facing what Sam was? The hospital is very quiet still because of covid, which means parking is easier and the hospital restaurant is quieter as well.


Sam is still being a total superhero fighting as hard as he can. I am still filled with the highest rate of anxiety. Feeling permanently petrified, I still can’t believe what has happened. I suppose I am walking round in a state of shock. I wonder if Sam can hear me? I hope I am giving him some comfort, I do worry that he is frightened. I am trying to read as many books to him as possible.  


The nurses have been fabulous. He has one on one nursing. I love the way that the nurses talk to Sam as they are caring for him. It truly feels like they care so much for him.


Sam is lying on a special cooling mattress and has a special cooling blanket on top of him to make sure his temperature is kept stable. For some reason ever since he became ill he has not been able to properly control his temperature.


I do hope that the consultants will be engaging with other hospitals around the UK, or globally to find out if they have experience of treating this sort of thing? Not that I am questioning their expertise of treating Sam at all. My thinking is the more brain power we have on trying to find a cure the better. Someone might have tried a treatment that we haven’t. That makes sense doesn’t it? I am presuming they will do research as a matter of course if they have a child presenting with something that is proving challenging, or is so rare? Maybe I am coming across as a massively anxious and neurotic mum...but not sure I care to be honest. I love my son so God dam much and I just want him to get better.


My sister gave me a bag of treats from Amanda today. So gorgeous and thoughtful. Her girls have also made some beautiful cards and drawings for Sam. He will love seeing them. Amanda also sent me a colouring book, it is perfect. I can’t read papers, or magazines, or go on social media. I am all consumed with Sam, but colouring something I could probably manage.   


Our Day 5 diary update will be out tomorrow. Until then I will leave you with this beautiful thought...

What If
Every time we speak their names,

There is a beautiful celebration in heaven.
Instagram Credit: Grief to Glorious Unfolding

With much love and thanks,


Sam's mummy