Day 3 and 4 - Paediatric Critical Care

Location: Nottingham QMC, Paediatric Critical Care Unit

Day 3: Wednesday 24 March 2021

A Mother's FIRES* Diary

*Febrile Infection Related Epilepsy Syndrome

09:30 I managed to somehow sleep last night. It was our first night staying overnight in hospital. Sam's dad and I are literally 30 seconds from critical care, and are so grateful for our room. I was praying so hard last night for Sam’s seizures to have stopped as quickly as they began and for this nightmare to be over. But it isn’t good news. Sam is still having seizures, and they are still trying different medications to make them stop.

It is like a roller coaster - medications initially seem to work - and then they stop. I'm frightened to get my hopes up, as I can't cope with the crash when his seizures start again. One of the medications also effects Sam’s blood pressure so he needs another medication to counter it.

Sam now has electrodes glued to his head and also has a camera monitoring him. They are recording both his brain activity and any movements he makes during his seizures.

He has an MRI and EEG booked for today.

I’m struggling to stay positive as every time I do it seems to get blown. I'm a bag of nerves. One of they many bleeps from the machines keeping him alive can turn me into a shaking mess - I wish I was stronger.

18:30 I am so disappointed, Sam couldn't have an MRI or EEG today as he wasn't stable enough and is on too many medications. The MRI machine is some way from the ward, so Sam needs to be stable enough for them to transport him down the hospital corridors, and whilst he is in the MRI.

The team are struggling to get Sam stable and stop seizing. They have a strict protocol of anti-seizure medication and they are making their way down the list. I can’t begin to describe how terrified we are, I just want to cry all the time.

We have spoken to the consultant working this evening and they are changing to a new drug this tonight and I am frightened to death of it making his seizures worse or we try another medication that works initially and then it stops and he starts seizing again. They said Sam appears to be unusual, most children they would have got stable by now. I am terrified and feel I am stuck in an utter nightmare.

I was trying to be positive this afternoon but feel I have come crashing down. The fear of not finding anything to control them is the most frightening thing I have ever experienced and feels like my heart is being stabbed a million times over, I can’t even begin to explain. I have been reading stories to him but had to come away once I had talked to the consultant I felt too upset and couldn’t stop crying.

They are thinking meningitis is still the most probable cause, but are not sure if its viral or bacterial, they are still trying to understand it.

I feel so up and down. I am literally in bits on minute and then trying to be strong and read Sam stories and be positive. But then things just keep popping my positivity bubble like when talking to the consultant. Then I am just too upset to even sit with Sam, where I should be. I just want to pull a duvet over my head and hide until someone comes to find me and says “Rachel, Sam’s going to be ok, his medication is working”. I truly do not know how to cope with this.

They are growing the cultures for the lumbar puncture. The sample wasn’t ideal apparently, it had a bit of blood in it. There were some white blood cells in it though which indicates infection. There are some further tests they can do which they are doing. I am going through a stage of negativity at the moment. It is so hard to pick myself up. 

22:00 We have just read Sam a bedtime story as we are trying to keep to his usual routine, albeit later than normal. He has a ton of drugs in his system and is sedated to basically the level of a general anesthetic, alongside trying new anti-seizure drugs. They are trying to reset his brain, though he is still having some seizure activity.

My mum and sister came this afternoon and also tonight. I felt strong this afternoon and then I went massively downhill late afternoon and crying down the phone. They were very worried so came tonight. I feel so incredibly low and finding it hard to find any positivity which I know I MUST to do for SAM. Every mum instinct in my body is crying out to help Sam, and I can’t and it is excruciating. I just want to take over and say to everybody just leave my son alone - I will sort it and make him better… but that is just not possible.

Day 4: Thursday 25 March 2021

08:00 Sam had a fair night. He is sedated to the level of a general anaesthetic; he can’t really be sedated any further. They are still trying to rest his brain so it can hopefully reset and stop the seizures. He is still having slight seizures. They tried to reduce his medication but had to increase it again because he started seizing more.

They have had to adjust his potassium levels, but they were using the same access point as his adrenaline, which was making his blood pressure drop because it interferes with it. So that is a new worry for me to horrendously and irrationally cling onto. They put another cannula in today to give an additional access point.

I find getting up in the mornings very difficult. I am terrified to find out that Sam has got worse, or that he is not getting any better. I am beside myself. All I want to do is sleep - sleep until it is all over and Sam is better and waking up.

I am struggling to cope with watching him like this, and every alarm going off sends my anxiety to a new level. I can barely breathe. Then I feel terrible because I need to be strong and be by his side, comforting him and letting him know we will get through this and everything is going to be okay, and that he doesn’t need to be scared.

I am just absolutely petrified that we won’t be able to stop this. It is a living nightmare. I never imagined anything like this happening to us. Meningitis, cancer and sepsis have always been my worst fears, but this… this is far worse than anything I could ever have imagined. They can’t definitively tell me what it is, nor how to stop it. How did I not know about this? Why is this happening to my beautiful boy? What did we do wrong to deserve this? Am I somehow being punished through Sam? Surely not.

I am grateful to Sam’s dad for being so calm and rational. He is really keeping up to speed with all the medications and treatments. My head is too blown for that currently. We have already fallen into a routine - me being the late night person and him being the early morning one - so that Sam isn’t alone for too long.

13:30 The consultant this morning said he is on multiple drugs for his seizures and they are going to try and reduce them to see if they can get him onto just one.

I met the hospital Chaplain today, so I am feeling a bit stronger. She has given me a Bible and a small wooden cross. She is a lovely lady and has been a tower of strength. She has helped me try to be more positive and calm. I need to stop looking at the monitors because they panic me - I just need to focus on looking at Sam. I am trying to micro manage something I have no knowledge of, but it is just so difficult not to. Sam is my whole world and I want to make sure he is receiving the best care in the world. I am frightened someone might miss something, so I feel like I need to be there to step in, to be his early alarm.

I have read to him a lot today, which I enjoyed.

We held a family prayer on WhatsApp outside the main entrance of QMC, with my mum, sister, Sam’s dad and me present, and the rest of the family on the call, including my brother in Denver and my cousin Sharon and Dad in Blackpool.

I keep telling Sam how loved he is and that baby Jesus is looking after him and giving him the strength to heal. I have also told Sam that the nurses are his extra mummies, helping him when I can’t. Those words help me just as much as Sam and give me the strength to leave him at night in their care.

Sam is fighting so hard, so I am trying to be much more positive. I only want positivity and love in the room with him.

A photo of Sam and his mummy in 2020, doing what he loved - walking in the Lake District with a collection of sticks in his hand.

Sam in an induced coma at Nottingham QMC fighting FIRES - March 2021

More diary updates will be released this week. But for now, I will leave you with this beautiful thought…

What if every time we speak their names, there is a beautiful celebration in heaven.

 (Instagram credit: Grief to Glorious Unfolding)

Thank you for reading. Every read of Sam’s FIRES diary helps to raise awareness of this devastating condition, to show the reality of what families go through, and to explain why research and support for families facing the unimaginable are so desperately needed.

There is currently no cure for NORSE and FIRES, no consistently effective treatment, and the cause is still not fully understood. Around one in five people do not survive the acute stage. While recovery is possible, many survivors are left with significant lifelong neurological disability, chronic epilepsy, and complex care needs.

Sam was a healthy, happy and loving little boy from Derby in the UK. He was rarely ill. Just after his fifth birthday, on 22 March 2021 at 8pm, the fight of our lives began when Sam had his first ever seizure after what appeared to be a routine viral illness.

Sam's mummy