Day 27 and 28 of Sam's FIRES Diary

Sunday 18 April 2021 and Monday 19 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.

 

Sunday 18 April 2021

 

8am I was up early this morning. Sam’s dad will be away tonight as he needs to work, so we have permission for my sister to stay over and come on the ward when he isn’t here. It is really kind of them, but I think they recognize how stressed I am. I have put fresh bedding on his bed for my sister and I also text her to ask that she make sure her fingernails are nice and short. I am absolutely paranoid about germs and infections. It is a massive, massive anxiety area for me. I watch intently when people approach Sam to make sure they anti-bac their hands and put gloves on. It stresses me massively. I ask her to bring a note pad and pen as well so I can start writing down questions for the ward round and take notes. Sam’s care is so complicated, and I don’t want to forget anything. And finally, I also ask my sister to bring a book called “My mummy and Me” from the bookcase above his bed.  

 

4pm My sister and me have been on the ward all afternoon and evening. I think my sister enjoyed spending time with Sam. We also had some long chats with his consultant, which was nice.

 

11pm It has been a busy day, but it hasn’t been a great day for Sam; I’m sure it’s linked to his infections. Although his infections do seem to be getting better as his blood inflammatory markers are reducing.

 

We are currently waiting on the on-call physio as has raised co2 levels, which we think are secretions which are proving difficult to dislodge. His Co2 levels need to be kept below a threshold for his neuro protection (think it is 5.2). I was getting so stressed watching his levels increase and his nurse was discussing whether to get the on-call physio in, and I was encouraging them to call them. The reason being they are brilliant at their job. They are the experts in lung management and I know they would be able to help Sam. Now I am anxiously waiting for them. I am being very impatient and wish they were here immediately! Although I know that isn’t possible!

 

12am Sam’s physio has been. They managed to get his Co2 levels down to 5.0 and as I felt that they were coming back down to his target level of 4.8 so felt that I could leave him. I did his usual bedtime routine with him. As like every night, I will myself to sleep by praying so so so hard and begging for a brighter day tomorrow.

 

Monday 19 April 2021

 

8am I was in bed for just after midnight and was back on the ward around 6am. I managed to get around six hours last night. Sam’s dad wasn’t here this morning, so I needed to meet the night shift team and get updates.

 

Sam’s Co2 levels have reduced from last night thank goodness, thanks to the on-call physio who worked their magic on him. Sam has a lot of secretions from his seizures and he hides them in his mouth so he needs lots of suctioning and respiratory exercises.  When I came onto the ward his Co2 levels were 4.8, so within threshold, although his levels have gone up slightly again, but his consultant isn’t too concerned. Because of Sam’s seizure activity and his brain damage they want slightly lower Co2 levels.

 

10am Sam had slightly increased seizure activity last night so his thiopental was marginally increased as was his noradrenalin. He had another poo as well which was utterly fantastic and his urine output is stable. Sam is on 30ml per hour of feed, which means he is getting some nutrition in him. One of his regular nurses popped round to see him this morning and they said he looked a much better colour. Think we are seeing the benefits of his blood transfusion from Saturday. One of his pupils went to an uneven size this morning, but it has now gone back down. It was nearly the same size as his iris; they think it may be connected to his seizure activity.

 

12pm We have a new consultant this week, and they seem really nice and engaging so that is good. For the benefit of readers, this consultant is one who I would grow to enormously trust and respect and they would be instrumental in Sam’s care.

 

I am a bit obsessed about making sure we are reaching out to other clinicians outside of the hospital. As I have said previously this is not because I don’t have faith in his team, as I do. He is in the best hospital, with the best medical team. My thinking is the more minds we have working on trying to find a cure the better. FIRES is so rare and in my head you just never know that someone in another hospital may know of a treatment that we have not yet tried. His consultant has reached out to their intensive care network to gauge some opinions and one person had success using an anesthetic gas. This is a perfect example of the fact they listen to me and makes me feel like we are a bit of a team. It is also the reason why I trust them, and that trust is so so important.

 

I have had quite a few meetings with Sam’s neurologists and his consultant about his new plan of attack. The doctors do keep reiterating that they are very very worried about Sam, and he remains critical. These are excruciating words to hear. We have a big meeting with his critical care consultants and his neurology team tomorrow to discuss the long-term for Sam. Apparently, it will be “open and honest”. I am dreading it to be honest. However, I know the doctors are doing everything they can, and they are reaching out to their networks for further advice and opinions. Which is good.

 

6pm Late afternoon I just went off to get a cup of tea and when I came back I found lots of people stood around Sam’s bed, and he had the covers off him. I panicked, my heart nearly stopped, I actually thought something had gone terribly wrong and Sam had died. It turns out his fabulous new consultant had wasted no time in organising an anaesthetic gas (isoflurane) to be trialled. In the space of literally a few hours a monster anaesthetic machine (they type that is theatre) was by his bed to deliver the gas via his vent tube. They will be trialing this for 48 hours. In layman’s language it is a liquid anaesthetic which goes into an AnaConda device fitted to his breathing tube where it is vaporized into gas which Sam then breathes in.

With all this moving so quickly, I started panicking. I realise how contradictory I sound as I asked to try something new, but I am so frightened of something making Sam worse. I questioned whether we needed to do it today. And I was told a big YES! Sam’s bed space got really busy as they were putting everything together, so I left the ward. I needed to leave them to it, I was so stressed, so I went off the ward to stand in the corridor to make sure I was not detracting from Sam.
 

A short time later, Sam’s consultant hunted me down in the corridor, he seemed very excited. He said I needed to come and see his CFAM monitor! We walked quickly to his bed, and he proudly points to a perfectly flat line, full brain suppression! His consultant said it was literally instant, as soon as they put the gas on, his brain activity was suppressed. It was what we wanted. Everybody was absolutely over the moon, as I was. There was some proper hope in the air!

 

9pm Sam’s dad came back this afternoon. I feel totally exhausted, and as Sam is on his Isoflurane gas and currently stable, I decide to get an early night. I feel crazily anxious. Basically, I daren’t get too excited about this treatment as I know I would not be able to handle the crash if it doesn’t work. I truly don’t think I could cope. I figure the best place for me is to go to sleep and see where we are in the morning. Sam’s dad stays late with him. I send him a message and say “tell Sam mummy loves him very much and I am super proud”. I get a voice note back, and it is a recording of his dad telling Sam my message. It made me cry.

 

Like every night, I will myself to sleep by praying so so so hard and begging for a miracle tomorrow.

 

Day 30 diary update will be out tomorrow. Until then I will leave you with these beautiful words.

 

~~~

What if…

When we meet again they will say,

“Thank you for believing in all the signs and messages I sent”.

Hugging them tightly we will answer,

“I always knew it was you”.

~~~

Insta Credit: Grief to Glorious Unfolding