Day 25 and 26

Day 25 and 26 of Sam's FIRES Diary

Friday 16 April to Saturday 17 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.

 

Friday 16 April – Day 25

 

Only a short update for today.

 

6am I was on to the ward super early this morning. I am so worried about Sam and his infection. Last night Sam had two nurses working non-stop on him. His team thought he had sepsis because his blood inflammation markers were up so they executed the sepsis protocol. After they carried out numerous checks, they confirmed he hasn’t got sepsis. He has a urine infection most likely caused from his catheter.

 

The results of his x-ray last night also confirmed he has ventilator acquired pneumonia, and his left lung is a white out and partially collapsed. This explains why he was struggling with his oxygen levels yesterday. His team is all over it and his nurses were working all night to try and remove all the horrible gunk/secretions in his lungs. They have been flushing Sam’s lungs with a saline solution which helps remove the gunk and have also positioned him so it helps his left lung.  It is clear his team is doing their utmost best for him. We are extremely grateful.

 

Sam’s blood pressure is much less stable than it has been but this is most likely due to the infection. He is still receiving his phenobarb as the team are trying to get him to super high levels as they think it may help stop his seizures. This medication also gives them the option to try and reduce his thiopental medication. We are hopefully going to be off his thiopental by 11pm this evening. After he is off this medication his neurologists want to do an EEG of his brain, to try and give them more understanding of his seizures and brain waves.

 

2pm My sister came for lunch, but I could hardly eat. I am incredibly worried about Sam.

 

11pm I got to bed exceptionally worried about Sam, I feel sick with worry. Like every night, I will myself to sleep by praying so so so hard and begging for a brighter day tomorrow.

 

Saturday 17 April 2021 – Day 26

 

8am I woke up in the usual way, and managed around six hours sleep.

 

I feel incredibly down and simply frightened, I am seriously worried whether he is going to survive this. I am realizing that caring for Sam is not just about stopping his seizures its about keeping him alive whilst he is in a coma. People could never imagine just how complicated and intricate Sam’s care is. He has been ventilated and in a coma now for 25 days and throughout all of that time has been on massively high levels of sedation and numerous toxic medications and treatments, plus he has not been absorbing his feed. All this is now beginning to have a massive impact on his little body. His skin is suffering from lack of nutrition and whilst he is on IV nutrition, it only delivers a certain amount that he needs. It feels like he is skin and bone. Sam’s blood pressure beginning to need a lot of support because of the toxicity and levels of medication. Whilst they are trying to reduce them, his seizures are returning. I am trying so hard to cling onto hope and positivity, it is so bloody hard. I want to close my eyes and go to bed and pretend it isn’t happening. It is like being continually tortured watching my baby boy battling this, my heart can’t take it.

 

To say I am proud of Sam is an understatement. I am so so so proud to call him my son, and I am humbled to see his fighting spirit. I couldn’t be any prouder to say I am his mummy.

 

12pm I have been reading to Sam this morning, it is the only thing I feel able to do, and I have a stack of books I can get through. During ward rounds his team confirmed the plan of attack for Sam. It is going to be a busy day. He is on antibiotics for his infection, he will receive a blood transfusion, more fluids, they will change some lines, take some lines out and put new ones in. They are going to increase in thiopental to try and get his seizures under control. They definitely think the infection is causing his increase in seizures.

 

Sam’s CFAM output (brain wave monitoring), looks worse. It seems almost chaotic and he is not achieving as much burst suppression (we want to see straight lines for his brain waves which means no brain activity).

 

Whilst Sam has had a poo, which is just utterly amazing, they have had to stop his IV TPN (total parenteral nutrition). TPN is delivered intravenously to people who can’t use their digestive systems. His nutritionist has said he has sky high triglycerides, which is a type of blood fat and source of energy. So clearly it is something to do with the ketogenic diet TPN he has been on as it is a high fat diet. This can cause swelling of the liver and spleen and can lead to pancreatitis. I just want to scream, what bloody else can go wrong…

 

6pm I had a crying melt-down as the consultant and sister, it was full mama bear, I was a mess and emotional. I was told that Sam was an very very poorly little boy and ‘we can’t let Sam suffer’. I didn’t want to hear it, and I am not having ANYONE give up on my son. I would seriously fight to the death for my son. Anyone who has not been in this situation cannot begin to imagine the pain at hearing these words, and I just want to scream, never ever ever give up on my son. I am trying to put my point across calmly but I know I am not. Saying this to me just makes me feel that they are writing Sam off and will therefore stop trying. I said Sam will let us know if he doesn’t want to fight any more, I don’t need anyone telling me that. I know he is incredibly poorly but stop telling me. I can’t cope with it. My head is all over the place, I can’t think straight. All I can feel is the love I have for my boy and I will do anything and everything to save him. Everything seems to be stacking up against him. I am simply terrified, and I don’t know what to do. Looking back now, with all the knowledge I have acquired since Sam’s death, I now know they were trying to prepare me for an eventuality that I didn’t even want to think about, my brain was unable to hear those words. In essence, Sam my die.

 

For the benefit of the reader, yet again let me emphasise I am not in an way being critical of his team. I am again showing what difficult jobs intensivists have to do, not only do they have to treat critically ill kids but they also have to manage parents like me who are unable to hear the words that the unthinkable may happen. But they have a job to do, and that is to put Sam first; not my feelings as a parent.

 

His team listened to my melt down, they listened to what I had to say, they tried to comfort me and were incredibly caring, and I could see this was upsetting for them too. Only last month when I was talking to a group of neurologists, they shared that FIRES is not just incredibly difficult and upsetting for the families but also for the medical team. Looking back now, I can see his team were trying so hard for Sam, and they knew they were facing a desperate situation. Despite their best efforts nothing was working and they are seeing Sam’s body get distressed. They had knowledge that I didn’t. They knew all about what the physical and psychological impacts would be to Sam, who had been on such high levels of medications and ventilated for so long. And they knew of the psychological impacts that occur to families from seeing their children in critical care. Treatment in critical care is invasive, it is not pleasant. It is done because there is a benefit to the patient and the consultant’s role is to not only treat Sam to get him better. It is also to know when there are no more benefits from these treatments for Sam i.e. there is no hope for Sam to have any quality of life.

 

Sam seems to be thrown so many curve balls, on top of his seizures. It just feels so incredibly unfair, how much does my son have to take? Please give him a break. I have learnt that things can literally turn on a sixpence, in the space of a few hours his condition can massively decline.

 

3pm I am exhausted and closed my eyes when I met my sister in the carpark this afternoon for my lunch. I am so stressed I can’t eat. I just want to close my eyes and pretend none of this is happening.

 

7pm Sam is much the same. But things are changing so quickly I daren’t give friends status updates. He has had a new canula and catheter. His team are changing/removing anything they can to remove the source of the infection. His physio team visited twice today, and as usual they were amazing. Sam always improves after they have worked their physio magic on his lungs, and as I have said before I love the way they engage with Sam, they truly brighten my day and I consider them an integral part of Sam’s team.

 

Sam’s team have confirmed that my sister can visit when Sam’s dad can’t so I am not on my own. Think they realized I need extra support.

 

11pm I have just got into bed. Today has been so tough, but Sam is still fighting, and therefore so am I. As like every night, I will myself to sleep by praying so so so hard and begging for a brighter day tomorrow.

 

Day 27 diary update will be out tomorrow. Until then I will leave you with these beautiful words.

 

~~~

“It takes a village”

Still applies when your child dies,

In fact, it has never been as important.

 

Thank you to my village x

~~~

Insta Credit: Our Journey Through Loss

 

Much love and continued thanks,

 

Sam's mummy