Day 11 of Sam's FIRES Diary
Tuesday 2 April 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

12pm Sam has one of our favourite nurses on today. He was very up and down last night and this morning, I feel incredibly worried and anxious. His blood pressure keeps shooting up, it's all very erratic and his temperature has increased together with the number of visible seizures. Since his temperature has come down his visible seizures on his arms have decreased. They are going to try and maintain his temperature at a consistent 36 degrees to try and help reduce his seizures. He has a cooling mattress beneath him and a cooling blanket on top of him. This is covered with one of his superhero blankets, and he has his cuddly toys on the bed as well. On the positive we do think his CFAM output looks slightly better.

 

I really think Sam is struggling to keep his temperature stable. It all links back to when he first started to become unwell when he was at home. His temperature then was so strange, it was erratic and is still being like that now.

 

Sam has a catheter in and his urine output is starting to be really high. They measure it each hour, and he is weeing loads. I don’t need to look at his chart to know when Sam is weeing lots, I can tell just by looking at his catheter bag. His urine is also looking really diluted as well, it has changed colour. I don’t know whether this is good or bad. Sam’s blood pressure is strange as well, as that had been more on the low side and had been stable. Now it is high and unstable. The Consultants haven’t been round yet, they started on High Dependency first. I feel so anxious today, it’s awful. I am on edge and have this feeling of doom. I need to snap myself out of it and sort myself out…

 

3pm Really worried about Sam. I didn’t meet my mum and sister for long in the carpark for lunch and couldn’t eat anything as just wanted to go back to be with him. I asked my sister to bring cleaning sprays and bleach etc with her as we share our hospital bathroom with another room, and I am utterly PARANOID about germs and passing them onto Sam. So each time I use the bathroom I have to thoroughly clean it first.  Our bathroom isn’t the best, and I don’t care. Sam fighting for his life has really put my life into perspective. I am so grateful for being in a room 30 seconds from Sam I couldn’t give a dam what condition it is. I would sleep on the floor in a cupboard. In my eyes that room is a palace.

 

6pm Sam had to have two procedures done for his plasma exchange, he had to have additional arterial lines in, one in his arm and one in his neck. However, they both went well, but our poor little boy. He has so many lines going into his little body. Sam’s keto diet is ongoing and he should be on the full diet by tomorrow, this may improve his seizures. Apparently, it is unclear why this diet improves seizures for some people, but it really works for some.

 

11.30pm All in all it’s been a shitty day, but we are hopeful it has ended better. It seems to change hourly and is like a roller coaster. I am managing to sleep, but I think I will myself to sleep with the hope that a new day brings brighter news and he will have improved, if that makes sense.

 

I have only told close friends that Sam is in hospital, the friends who all know and love my boy so much. They are all so wonderful, and give me such immense support, courage and strength. Sometimes it feels like they are somehow passing their strength onto me when I am weakening. Many of them text me every single morning, just a simple text to let me know they are thinking of us. It just means so much to me.  

 

Sam’s nana sent a video story through for Sam to listen to. It was Mog the Cat, but nana personalized it with our cat’s name Mr Smudge <3

 

Day 12 diary update will be out tomorrow. Until then I will leave you with this, which Sam’s magical reception teacher, Mrs Allen, sent me today. I just love it and it sums up how I feel so beautifully. Myself and Mrs Allen always say that she was just meant to be Sam’s teacher. He utterly adored her and she continues to always remember Sam, which means the world to me.


~~~
Loving the Gone

 

You didn’t ask to be strong.

To be forced to figure out

how to live after they died.

It may even feel like a punishment.

But they are watching.

They love hearing you laugh,

And hearing you tell their story.

I know breathing without them hurts.

Some days have more tears than smiles.

But oh how they love watching you love.

~~~
Credit: Sara Rian

With love and thanks,

Sam's mummy x