Day 21 of Sam's FIRES Diary
Monday 12 April 2021
Creating Awareness of Febrile Infection Related Epilepsy Syndrome


Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

9am I was so tired last night, that I didn’t have the energy to text updates to my friends, so this morning I had to send a few messages to my friends who had messaged me yesterday.

You will know by now how anxious and worried I am every single day about Sam. I have a whole list and more of things that I worry about. One of the many things is what would happen if something happened to Sam in the middle of the night and they needed us. His team said they would call us or knock on the door of our room. When I go to bed, I dress in leggings and a t-shirt and have my shoes ready by my bed so I can hop straight out of bed and run to the ward if we get a call. In my mind I can literally be there in 30 seconds, so no time at all. Hospital life is spent scenario planning, researching, trying to understand body language to make sure people aren’t giving up on Sam, being anxious and worrying about him.

I make the usual phone call to Sam’s dad as soon as I open my eyes to get an update. I have butterflies in my tummy hoping to hear the words he has stopped seizing. If I don’t hear those words the next words I hope to hear are don’t worry he is stable he hasn’t gotten any worse.

11am When I came onto the ward earlier this morning Sam’s lovely night nurse had lined up all his cuddle toys at the bottom of his bed on his Batman throw. Honestly, they look after Sam so beautifully. It makes my heart sing and I am truly grateful.

Sam had a stable night. They were trying to reduce some of his meds last night such as midazolam and thiopental. But his seizure activity increased so they had to increase them. But overall they have reduced them, and he has some stable suppression of his brain activity. The brain wavers look more steady again a bit more rounded which is what we want. His ventilation pressure increased slightly and they thought he may need some support so they used a saline nebulizer solution to try and get some mucus off his lungs and they got quite a bit up. Sam will definitely need some physio today. His urine is looking ok, and he is still on his steroids to help support this.

Sam hasn’t had a poo still, so they are continuing his laxatives both through his feeding tube and by having an enema once a day. They have taken Sam off his rocuronium (which is a muscle relaxant) today and are steadily reducing it. However, Sam’s tongue twitches have come back. They want him off his rocuronium as they think this will be impacting on the lack of movement in his tummy and bowel. It may help him start absorbing his feed and help him to poo.

Monday is change over day for consultants and we are waiting to meet our new one for this week. No doubt during the morning ward round will hear the strategy for this week. But I think they will be focusing on reducing his medications, well the ones that should only be used in the short term. The team will be speaking to his neurologist on the plan to progress weaning him off critical care meds and move towards maintenance meds for his seizure control.

12pm I sent a load of photos to my friend Becky today. I want to put them up around Sam’s bed so when he wakes up he sees all these people he loves and who love him, and he sees fabulous happy memories and all the fun times we have had together. I also think it is important for the medical team to see Sam in happier times and see how much he enjoyed life and how loved he is.

4pm We met a new neurologist today and we like him, he was engaging and positive. He has colleagues in India who he is in contact with as they have more experience of treating NORSE/FIRES as it has a higher prevalence over there due to their large population size. We felt very reassured he was doing this research to try and find other treatments. He mentioned a research paper that was not yet published as well and wants to start IVIG straight away, restart the ketogenic diet and start using phenobarbital. Apparently, there has been some success using high levels of phenobarbital in India but he is going to discuss it with his colleagues first. I think they are going to try him on the Ketogenic diet TPN (a liquid feed given intravenously).

9pm My gorgeous friend Becky came tonight instead of my sister. She is on her own, so I wanted to give her a little break. We met in the usual East entrance carpark and had dinner in her car. She brought some new superhero blankets I had ordered for Sam so that is great. It was lovely seeing her. Becky brought the photos with her and also Daisy as well so I could have some cuddles with our beautiful black labrador.

Amanda text me to say Sam’s best friend from school has recorded a video for him and is it ok to send. I say of course it is, Sam would love to hear it. I think the impact on your child’s friends can sometimes be forgotten about when a child is seriously ill in hospital. His friends are only five years old, they have had a massive shock hearing Sam is so poorly and they are missing him. I know their parents will be protecting them from how poorly Sam is, but they must be so confused and worried, it is a lot for them to understand.

11pm It has been a busy day as Sam’s nurse went home sick, so it felt that I was a bit of a constant in his care today, as he had differing nurses stepping in to cover for her. I think the neurology team are a bit perplexed by Sam’s brain patterns as they have said they are really complex. It so hard to hear, as I don’t want to hear that he is complex and difficult to understand. It is so hard knowing that even with the great medical team that we have caring for Sam, and despite them reaching out to other great doctors around the world no one knows of a treatment that will definitively work. When I say this is your worse nightmare, it truly is. I actually don’t think we could be facing a worse illness. Can you imagine your child facing this situation?

Sam has another MRI scan booked for Wednesday which I am very very nervous about, so this is my new worry for the next few days. I have continued to read to Sam all day, and we are speeding our way through the Magic Faraway Tree.

Once I feel Sam is stable, I say his good night prayers with him, sing him his good night song, tell him how loved he is, and how proud we are of him. I also tell him that we will get through this, and not to worry he just needs to keep fighting.

So tonight, as usual I will myself to sleep by praying and hoping for a brighter day tomorrow.

Day 22 diary update will be out tomorrow. Until then I will leave you with these beautiful words.

~~~
Night after night,
I go to sleep hoping I will see you in my dreams,
To hear the sound of your voice that I miss so deeply,
To hear the words “I love you mama”,
To hear your laugh,
To see your smile,
To feel your hand in mine,
To feel the love of our mama bear cuddle,
These moments, even in dreams, are something my soul yearns for.
~~~
Instagram Credit: The Grieving Moms

With love and continued thanks for all your support,

Sam's mummy