Day 8 of Sam's FIRES Diary
- Tuesday 30 March 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit


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


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


There has been no real change overnight for Sam his brain waves are fairly stable, we think there is a 50% improvement in his seizure activity.


11am We have just had a long chat to one of his consultants this morning following the MRI yesterday and the team are busy making a plan for Sam. We need to get some control over his seizures urgently. There are a number of other interventions for them to try. As the urgency is increasing due to the damage to Sam’s brain they are now considering interventions which they wouldn’t have done previously e.g. Anakinra. Everyone is thinking outside of the box and it is up to Sam’s neurology team to pull it altogether.


More importantly for me they gave us reassurance that they are doing all they can for Sam and they are NOT giving up. I needed to hear this. I am obsessed about thinking people are giving up on Sam because he is so poorly and he is proving difficult to treat. I have stepped up a gear into mama bear mode protecting my 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 you feel so absolutely powerless and helpless. I feel like screaming “can someone just not make him better”. I am struggling with the fact in this day and age there is no effective treatment. 


What has really struck a chord with me is the consultant today said "they believe our love for Sam and being there for him really does help him."  I could cry that 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 been 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 The antibiotics for Sam’s lung infection seems 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. I wish I could cuddle Sam and hold his hand but as we feel his seizures get worse if he is touched I daren’t.


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 he is now on the maximum level of midazolam, but he is not where they need him to be and time is of the essence. They are therefore going to also reintroduce the horrible horrible thiopentone which gave Sam total brain suppression e.g. flat line of brave waves, last time. Because of the toxicity and side effects of this drug he came off it, but they are going to try this alongside his midazolam as time is running out. We need control of his seizures.  


My mum, sister and Daisy came as usual today, 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 just numb with shock at everything.


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 the caring for Sam side as well, and the emotional side. It feels like I have this antennae on me so alert me if anyone 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 9 diary update will be out tomorrow. 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

With love and thanks,

Sam's mummy <3