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 Sam had a stable night in terms of his vital signs like blood pressure, heart rate, ventilation etc. However, his pupils are still disappointingly unresponsive. He is being cooled to 35 degrees. However, his medical team tried to reduce his medications last night, the ones that they didn’t think were helping in reducing his seizures and increase the ones that they think were. However, they had to stop the reduction because his seizures returned. We have lost track on just how many medications and infusions he is on. His sodium balance has remained within the threshold, but his urine output is still too high and is very pale, not the normal colour.

 

His CFAM (brain monitoring) looks like it did yesterday. We are not yet achieving the burst suppression that we need (stopping brain activity which shows as a flat line for about 3 to 4 seconds on the CFAM monitor) and then a short burst of brain wave activity. Sam is getting around one second of no brain wave activity, it needs to be longer. Whether his seizures are clinical or subclinical I don’t know as one of his meds is stopping any movement.

 

As Sam had the last of his plasma exchange yesterday, there are plans to do his IVIG either today or tomorrow.

 

Sam’s brilliant medical team have been busy reading research papers, they are all working so hard to try and beat this. I cannot begin to expression our appreciation towards them. As I have said previously not only are they trying to save my son's life, but they are also trying to  Our consultant this week has read a paper that showed some success using high levels of magnesium in Japan. It sounded similar to Sam’s FIRES case. Apparently, it is used in eclampsia treatment as well.

 

12pm We have had discussions with his medical team who have shared that a good outcome for Sam will be that he survives, but he has some form of neurological disability, how severe we don’t know. They gave a 10% chance of survival, but they were reticent to place a figure on it, we pushed them. I just need everyone to concentrate on the 10%, I just need him to survive. I don’t care what disabilities he has; I just want to take my boy home so I can take care of him after this nightmare ends. To be honest I can’t think too hard of the position that Sam is in, or I will fall apart, and I can’t allow that. I do have the occasional melt down, but I do pick myself back up, I have to as I need to keep fighting with Sam.

 

I am trying to focus on continuing to fight and not give up hope and making sure everyone is of the same mindset.

 

One of his biggest challenges still is how much he is urinating as he is weeing his calcium out and he needs that to protect his brain

 

3pm My cousin Sharon and sister got to QMC around 12.30pm they parked in their usual spot outside East Entrance, near the grass. We popout for our lunch and eat it with them in the car park. They have brought Daisy with them so we can have some cuddles. I ordered some more story books for Sam off Amazon and really happy they have been delivered. They also brought Sam’s Child’s Farm bodywash as well so Sam can have his bed baths using that. It will be a familiar smell to him, is organic and good for his skin. When they visit they also take my dirty washing home with them and bring me clean clothes.

 

Sam seems to be having a steady day and long may that continue. His magnesium continues to be pumped in. I am praying so hard that this works. My very close friends, Becky, Emma and Sarah have asked if I would like them to pop over. We have all known each other since we were pregnant and regularly meet up with the kids. I said that would be lovely even if we only meet up for half an hour.

 

12pm Amanda’s girls have asked if Sam would like another story, of course I say immediately yes. I know he would love to hear their voices.

 

Sam’s blood pressure is all over the place, I can’t go to bed until it is settled. It is because of his meds. He has got a team around him trying to sort it and they are talking me through what they are doing. Everything is such a fine balancing act. He needs a mean blood pressure of 70 as part of his neuro protection. They are trying to balance his fluid intake and output. I am trying not to interfere when his blood pressure starts to dip below 70 but it is so hard not too. Whether I will get any sleep tonight who knows.

 

We have an MRI booked tomorrow and I am dreading it. To be honest I don’t want it to go ahead. It is so frightening to see him leave critical care as he is on so many medications and his blood pressure is just not stable. I am terrified something will happen on route, or whilst he is in the MRI.  Also, Sam seems to go unstable after he has been for a scan, and we always get bad news. Getting more bad news will utterly devastate me and I am terrified it will cause people to be more negative and start to give up hope. I feel incredibly anxious and quite simply scared.

 

Day 16 diary update will be out tomorrow. Until then I will leave you with these beautiful words.

 

~~~

After losing them

It may feel like we have nothing left to live for, nothing left to fight for and no more purpose,

But keeping their memory alive, and sharing their story,

Is one of the most important things you will ever have to do.

~~~

Instagram Credit: Grief to Glorious Unfolding

 

With love and thanks,

Sam's mummy <3