Sam's Fires Diary - Day 16

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Day 16 of Sam's FIRES Diary
Wednesday 7 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.

 

10am I…

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Sam's Fires Diary - Day 15

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Day 15 of Sam's FIRES Diary
Tuesday 6 April 2021
Creating Awareness of Febrile Infection Related Epilepsy Syndrome (FIRES)


Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

10am

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Sam's Fires Diary - Day 14

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Day 14 of Sam's FIRES Diary
Monday 5 April 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

Just a short diary update for today.

 

12pm Sam had a stable night which I am…

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Sam's Fires Diary - Day 13

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Day 13 of Sam's FIRES Diary
Thursday 4 April 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

10am My sister and mum came over early this morning. We woke up to the news that…

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Sam's Fires Diary - Day 12

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Day 12 of Sam's FIRES Diary
Wednesday 3 April 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

12pm It’s a big day today, plasma exchange day. I woke up with a bit of hope in…

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Sam's Fires Diary - Day 11

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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…

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Sam's Fires Diary - Day 10

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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…

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Sam's Fires Diary - Day 9

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Day 9 of Sam's FIRES Diary
Tuesday 31 March 2021


Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

11am As usual I woke up feeling incredibly anxious. I feel I am in a permanent state…

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Sam's Fires Diary - Day 8

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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…

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Sam's Fires Diary - Day 7

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Day 7 of Sam's FIRES Diary
- Monday 29 March 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

9am Woke up feeling sick with nerves. Today is a big day as Sam is due to have his…

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Day 6

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Day: 6

Date: Sunday 28 March 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

10:30am As the main ward is more noisy than the isolation room Sam is wearing ear plugs as we think noise and touch may be a trigger for his seizures. Last night the nurse also…

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Day 4

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Day 4 of Sam's FIRES Diary
- Friday 26 March 20216

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit
 

2.30pm My brother has sent over a video of a story he has read for Sam with, called “The Day the Crayons Quit” and a video message from his cousins. Such a fab idea…

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