Day 20 of Sam's FIRES Diary
Sunday 11 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.

 

It’s a short update for today.

 

11am I slept ok, had my usual six hours. Woke up as usual feeling incredibly anxious for the day ahead. Sam had a fair night. All of his IVs are stable apart from his horrible thiopental which had to be slightly increased as he started to get some breakthrough seizures. So that was incredibly disappointing. His blood pressure needs to be supported as well, but that is due to his medications.

 

The team are trying to insert Sam’s NJ tube (feeding tube) to his lower intestine, but after he had an x-ray to check on its position, it turns out it had curled. Who knew inserting a feeding tube was so complicated. After discussions between the team, they have decided to wait, and see if it straightens out naturally.

 

Sam’s poo mass still hasn’t moved. They are going to put Movicol laxative down his feeding tube to try and soften it. They are hoping it will move in the next day or so then we can start him back on his ketogenic diet.

 

3pm I ordered some more superhero blankets from Dunelm tonight. I have brought Sam’s blankets from home and some of his cuddly toys to make hit more homely for him, but wanted some spare so I can send them home with my sister to wash. I have asked our lovely friend Becky to pick them up for us.    

 

8pm They are trying to reduce his midazolam (anti-seizure drug) as he is on so much, crazy amounts. They don’t think that is having a major impact on stopping his seizures, so they need to start reducing it. Short term won’t have an impact, but being on it long term can cause some damage.

 

Sam’s catheter just got blocked as his urine output massively decreased, but they gave it a flush and it looks like that sorted it. We go from one extreme to another.

 

Sam is still on his TPN (IV nutrition) as he still can’t have normal feed as he hasn’t had a poo yet.

 

Sam had his beathing tube changed today. He went from an oral (tube being in his mouth to nasal (tube through his nose). Apparently, this is common practice for long term ventilated patients and Sam has been biting down on his tube when he has a seizure, so this is much more preferred method for him. I couldn’t watch them make this change; I waited outside his curtain.    

 

Day 21 diary update will be out tomorrow. Until then I will leave you with these beautiful words.

 

~~~

Some days,

We just need to sit in nature,

Talk to heaven,

And search for signs.

~~~

Instagram Credit: Grief to Glorious Sun Folding

 

With love and thanks,

Sam's mummy <3