Day 33 of Sam's FIRES Diary

Saturday 24 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 Woke up early, Sam’s dad was on the ward when I woke up. He sent his usual morning family text update out which I read as soon as I opened my eyes. Sam had a stable night which was good. As he is now back on his isoflurane gas, we have been able to drop his other sedation drugs of ketamine and thiopental which is great news. The more drugs we can drop the better and give his body a rest from toxic medications.


Today his team are also going to start weaning him off his magnesium sulphate which should take 48 hours. His triglycerides (fats) in his blood were still high, but over the last 36 hours his bloods have become a lot more normal and are betting thinner again. Overnight Sam had another blood transfusion as his blood count fell below 70. They are also monitoring his blood haemoglobin as it is high, which can lead to blood clots. They have medication to treat this if the levels get too high. The clinical pharmacist confirmed there is evidence that super high level of phenobarbital can cause this, so he will be closely monitored.


12pm Sam’s ketone levels have remained steady, they are five, so he is still in ketosis, which is brilliant. His heart rate and blood pressure are all stable, and he is continuing to stimulate his own breaths on the ventilator. He had a small clinical seizure just after midnight but they lifted is isoflurane gas level and that helped.   


4pm It feels like we have had a busy few days, the days are going too quickly. Whilst Sam is stable this is due to his isoflurane gas, and this is just a holding drug. We still need to control his seizures using more standardised anti-seizure drugs. We need to find the magic combination for Sam, as nothing is working.


There is an acceptance now that we won’t be able to stop his subclinical seizures (the ones you can’t physically see, but that show as changes to his brain patterns on his CFAM monitor) so the focus is on the clinical seizures (i.e. the ones you can see).


We have been told the question is whether Sam can have some quality consciousness in between his seizures, as his brain patterns are not normal. But, we aren’t going to know until we try to wake him up.


9pm They have changed Sam’s vent settings so he is triggering his own breaths, which is really positive news as we weren’t sure if his brain damage had effected the breathing part of his brain. However, I don’t get excited by these little glimmers of hope as things can change so quickly in a space of a minute. These are just tiny parts of a jigsaw that are slowly being put together. And we will no doubt go backwards from this position, and we may have to go back onto some of the more toxic drugs again. But we will see, it is moving in the right direction for now.


Day 34 of Sam's FIRES Diary

Sunday 25 April 2021


7am Another stable night for Sam so that is good. He had no seizures overnight, and just one small one around 6.30am. His CFAM brain waves are looking flat with just small burst of brain activity.


Sam still hasn’t had a poo, so we need to him to have one. We think one is on the way thought. The good news is that CBD cannabidiol is going to be prescribed today. His neurologist has given it a 50/50 success rate.


His ketone levels are still good, holding at five within the target range for ketosis. Sam’s triglycerides are coming down still. His highest was 41 and now they are 20, normal range is one! He needs to metabolise these fats.


12pm Sam’s heart rate and blood pressure are beginning to get slightly elevated from his norm, so maybe that is something to look out. It is now on my radar as we haven’t had a high heart rate before.


My brother sent some more recordings through of books he has read for Sam. Heys and Archer, his cousins, also sent through some recordings of jokes as well! Sam would love this!


Whilst his seizures seem to be controlled somewhat, we need to remember that this is a holding position. We are no further forward to sorting the seizure out, they are just being managed by his isoflurane (anaesthetic gas). We have praying for a magic solution for him.


The medical team have to change his isoflurane gas every 24 hours, and it is my new stress area. Every time it is changed, he gets a massive surge of it. And I 100% hate it as I worry so much. As I have said previously, I need things on a constant, any small blips gives me extreme anxiety. When he gets the surge it can interfere with heart rate and blood pressure etc.


5pm Sam has had his regular visits from the physiotherapy team, and they continue to be awesome. I just love the way the speak to Sam all the time, they are so engaging with both Sam and me. I actually look forward to their visits, as if Sam is having any respiratory issues they always make him better. I have so much confidence in their abilities.


We have one particular nurse who we seem to be getting on a more regular basis and she has suggested that she becomes our Lead nurse, so will attend meetings with us etc. I can’t begin to tell you how much I appreciate this. I really trust her as well, she is good at calming me down, and has a good directness about her, which I need. She is exceptionally experienced, and is really methodical in the way she works. She ticks my boxes. But there are so many other awesome nurses there as well.


Having the private room is really working well. We are having close family members visit daily, which is lovely for Sam. We have a rota system going so we don’t have too many people in the room at once, but it is giving grandparents and aunts and uncles chance to spend precious time with him. I just hope Sam can feel the love that he is being surrounded with.


11pm The days seem to go so quickly lately. I feel exceptionally down, I am finding it all so tough. I just don’t want to speak to anyone, unless it is to his medical team. I literally have no energy left what so ever for anything other than Sam. I can’t even give any proper updates to anyone.


We have still continued to keep Sam’s battle exceptionally private. Noone but family, my very close friends, and work colleagues know about this. Our focus is just 100% on Sam and getting better and him home.


I have continued to read lots to Sam, play audio books and music to him, keep his skin well moisturised, and do his daily cares with the nurses.   


Once I feel Sam was stable I said our good night prayers together, sing him his good night song, tell him how loved he is, and how proud we are of him. I gently reassure him mummy will never leave his side, we will get through this, and he just needs to keep fighting.


As like every night, I will myself to sleep by praying and hoping for Sam to have a brighter day tomorrow. And I hope that Sam’s nurse has a boring and uneventful night.


Day 35 diary update will be out tomorrow. Until then I will leave you with these beautiful words.


There is nothing as powerful as mother’s love,

And nothing more healing as a child’s soul.


Credit: Unknown