Day 10 of Sam's FIRES Diary
Tuesday 1 April 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

7am I got to bed around midnight last night. Waking up is incredibly painful. The first few seconds of disorientation upon waking is dreadful; when you momentarily forget the horrific nightmare you are facing. It is like being hit in the stomach every morning, and it takes your breath away. I make my usual phone call to Sam’s dad as soon as I wake up, as he does the early shift from around 5am, to find out how he is to try and somehow control my sky high anxiety.

 

One of our favourite nurses is on today, which makes my anxiety slightly better. They are all fantastic but some we just really connect as they just seem to tap into our needs! But, I am sure every parent has different needs. There has been no real change for Sam, thought his CFAM output looks slightly better to the untrained eye. There is not as many high and sharp peaks to his brain waves, they are more smoother and rounder, which is what we want. Sam’s breathing seems to be ok, he is on a bit of oxygen but not too much and his blood pressure is holding fairly steady. Sam’s keto diet is still ongoing, and appears to be working fine. His liver appears to be processing the fat which is great. Sam seemed to be having some water retention so he had a diuretic and that has helped him lose some fluid.

 

I feel his medical team are doing their utmost to research and try all the possible treatments for Sam, which does give me comfort. Sam’s neurologist gave us an information printout about FIRES from NORD (National Organisation for Rare Disorders). It is not something any parent wants to hear that their child has rare disorder, and to say it didn’t make great reading either would be an understatement. It states "it is defined as a condition not a diagnosis" and on the first page states “it carries a a high rate of complications and mortality”.  It is a lot to take in and try and get our heads around. Whilst there are reports of certain treatments working as there are so few people with FIRES, there is no control group, so who knows if the treatment really worked, it may just be a coincidence?

 

Sam and me and my friend Becky and her little girl Holly were meant to be going to the Lake District in a safari tent in the Easter holidays. I haven’t wanted to cancel it, as in the back of my head I thought there was just a tiny little bit of hope that Sam may make a miraculous recovery. But I told Becky to cancel it if she could. She told me today that she has and the holiday company were amazing and incredibly kind. They gave her a full refund and sent their good wishes to Sam. The money for me was clearly not important, but I didn’t want Becky to lose hers (even thought I know this was not important to her as well). I feel incredibly grateful to this company, as they didn’t need to that so close to the holiday. 

 

10pm I feel I have had a more positive head on today, we will get through this. I just want to get my boy home again, where I can look after him, where he can feel safe, where he can jump into bed with me in the middle of the night and drift off to sleep feeling safe in my arms.

 

Sam’s arms have been twitching off and on all day. However, the neurologist has said that it isn’t too bad a thing as it shows his frontal lobe is working. He is still on his Anakinra. He has plasma exchange schedules for Saturday, Sunday and Monday. He will then have IVIG Tuesday onwards.

 

My brother has sent through some more recordings of him reading books for Sam. He has sent through Pete the Cat and his Groovy Buttons, Dragons Love Tacos and Secret Agent Splat. He has been so busy recording and we love his story telling, he uses a lot of different voices. He also sent through a link to the Basil Brush Album that we used to listen to from the 80’s, in particular Goldlilocks and the Three Bears, which is the best story ever. I know Sam would utterly love it and laugh his socks off.

 

I have read lots of books again to Sam and had his Tonibox playing. We also had our regular visit from the hospital Chaplain, I am not too sure what I would do without her...

 

My mum, sister and Daisy came over in the afternoon and evening as usual. In the evening they brought dinner with them all wrapped up in tin foil for us to eat in the car. We are very grateful and it was wonderful to have Daisy cuddles.

 

Sam’s dad is doing an amazing job keeping up with all the medications, the doses and all the technical information about his treatment. I think we are making a good team. Our Sam is our total focus.

 

Every night before I go to bed I try and do our usual night-time routine. We read a book, say his prayers and I tell him how loved he is. I pass on messages from all his friends and family. I also reassure him and tell him everything is going to be ok, he just needs to keep fighting and I will never, ever, ever leave his side. Words cannot express how much I love my son, and I am just utterly in despair at what he is having to face.

 

Day 11 diary update will be out tomorrow. Until then I will leave you with this...

~~~
Joy is,

When someone asks us,

About the life of the person we grieve.

~~~
Instagram Credit: Grief to Glorious Sun Folding

With love and thanks,

Sam's mummy <3