Day 24 of Sam's FIRES Diary

Thursday 15 April  2021

Creating Awareness of Febrile Infection Related Epilepsy Syndrome

 

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

8am I am managing around five to six hours sleep a night, but I keep having terrible dreams, it’s just awful. And, as usual I find waking up incredibly difficult. That split second upon waking when you momentarily forget about reality…then you are swiftly reminded as you open your eyes and see you are in the hospital bedroom.

As I do the late shifts, Sam’s dad does the early ones and he does a fabulous job getting the detailed updates from the night shift team and summarizing it all in text updates. I ring him for an update as soon as I open my eyes and I am shaking, oscillating between hope and fear. I just feel like crying as soon as I open my eyes. The fact we will be getting Sam’s results from his MRI scan today makes me even more nervous. I am clinging onto the tiny little bit of hope that Sam may have given the miracle I have been praying so so hard for. But, then thinking as long as he hasn’t got any worse I will be grateful for that. What I don’t want to hear is that he is deteriorating.

I get the update from Sam’s dad and he sends through some photos of his CFAM monitoring which shows some decent burst suppression of his brain waves (which shows his seizures appear to be somewhat controlled for now). I am relieved, he hasn’t got the miracle cure, but he hasn’t got worse. I quickly got ready to get onto the ward.

My lovely friend Amanda text me this morning, as she does every morning for an update. She said she was praying for some positive news. Sam had a steady night, however his thiopental was meant to be reduced, but his CFAM (brain monitoring) started to show break through seizures so they didn’t reduce it by as much as they wanted. His bolus of phenobarbitone was given early hours of the morning and he started to regain his burst suppression which is what we wanted.

9am I have text my very close girl friends to cancel their visit today. They were meant to be popping over today for a bit of support. I explain that I just don’t feel up for a visit as I feel so very down and have the MRI results today as well. I need to concentrate on saving my energy for Sam. I know they won’t mind, and I so very much appreciate them taking the time to come over.

I only have the basics with me at hospital as I thought Sam would only be in for a few days. This morning, I asked my sister to bring my Si perfume with her. I thought I should start wearing it, as Sam may recognize the smell, as it is the only perfume I wear and normally would wear it daily.

12pm The medical opinion on Sam’s constipation is that his poo is beginning to soften as we have had some signs it may be on its way, with a bit of discharge. It is so very important he has a poo so he can start to properly absorbing his feeds. He is losing so much weight, he looks like skin and bone so we are desperate for him to start receiving his normal feed. We are hopeful his poo will make an appearance today. As his team thought Sam’s poo has now softened, he has started on his ketogenic feeds via his feeding tube including his laxative as well.

6pm We had the results of his MRI scan this afternoon. It showed no major changes since the last scan, but no improvements either. His brain damage is still present. However, the new concern is that Sam now has an infection, and it looks like a bad one. Sam is showing high inflammatory markers in his blood. The problem is his body temperature is being kept unnaturally low due to his therapeutic hyperthermia, and his heart rate is lower than normal due to his medications, so the markers of an infection aren’t going to be as obvious. Sam’s immune system is being hammered, and it is being suppressed due to his medications, so this is just heart-breaking and I am absolutely panicked; I just want to cry.

My friend Becky has come tonight instead of my sister, as she is on her own and needs to do some work. Rhi, my sister, has very kindly been given compassionate leave from her job, but she still has some bits of work she needs to do. Becky goes via my house, picks up some tea that Rhi has cooked. Becky also brings two little clay models that Holly, her daughter and Sam’s best friend has made. Sam would utterly love them. I feel in a total mess, I don’t stay with Becky for long, and I can’t eat, I feel so fearful. I just want to get back to Sam.

10pm I came back from meeting Becky with Sam not in a good place, he is having breathing difficulties and his oxygen sats keep plummeting. I can’t begin to explain how frightened I am. I am praying so hard for him to keep fighting this. He is on antibiotics and the team is trying to find the source of the infection. Hospital antibiotics are super strong they are much stronger than the ones you would be given at home.

I told Sam about the models that Holly has made for him and said she sends him so much love. I described them to him and placed them right next to his bed.  

 

11pm Sam's brilliant team has arranged for the on-call radiologist to come and give him x-ray on his lungs. When they arrive I have to walk out, I can’t cope with seeing it and I don’t want to break down and cry. Once they have done what they needed to I go back in. They also arranged for the on-call physiotherapist to work on his lungs. I just can’t believe how quickly things can change.

 

My brother has sent through another two stories for Sam, this time it is Click Clack Moo and Giggle Giggle Quack. In the midst of all this turmoil and heart-break it gives me a moment of relief.

 

12pm What frightens me most in all of this is the thought that Sam is frightened. I simply can’t bear that thought. So, whilst I am sharing all my inner-most thoughts and fears with you, when I am with Sam I try and do my utmost to make sure I am as calm as possible. But inside I am crumbling and no doubt snappy and emotional with people, and I can barely talk and eat. The stress and fear inside of me is unbearable.

 

I daren’t leave Sam, I am so worried about him. But once I finally feel Sam is stable, I do his usual bedtime routine with him. 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.

 

As like every night, I will myself to sleep by praying so so so hard and begging for a brighter day tomorrow.

 

Day 25 diary update will be out tomorrow. Until then I will leave you with these beautiful words.

 

~~~

"When we lose someone we love,
We must learn not to live without them,
But to live with the love they left behind"
~~~
Credit: Unknown