Day 17 and 18 of Sam's FIRES Diary
Wednesday 8 April and Thursday 9 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.

 

12pm Woke up the usual way, feeling full of anxiety and exhausted. My main concern today is that Sam still hasn’t had a poo. I am desperate for him to have one, I can’t tell you how worried I am about this weight. He is literally like skin and bone. Seizure activity can use up a lot of calories. He can’t absorb his feed properly as he is too impacted. Sam needs some nutrients inside of him and he needs to go back on his ketogenic diet. They have placed his feeding tube lower into his stomach to help him absorb. He is on high levels of laxative and he had an enema last night. I am praying he has one soon. I can’t begin to express what it is like looking at your son so desperately thin on life support. It feels like one step forward one step back all the bloody time. And it breaks my heart into tiny little pieces to see Sam like this. I am feeling so down and struggling. I can’t find any positivity today, I am trying so hard too as well. I just want to cry all the time, I feel so helpless and my heart actually hurts from seeing Sam like this.

 

 My wonderful friend Amanda, who I am in contact with every day, sent me a wonderful reassuring text. She reminds me that any weight loss would show on Sam anyway as he is tiny. She reminds me that no one should ever have to watch their son go through this, and how I am feeling is perfectly normal. I don’t know where I would be without her never-ending support.  

 

I can’t get my head round that in this day and age they can’t cure Sam. I never thought for one minute we would be facing a condition that doctors knew so little about, that they don’t even know what caused it and they don’t know any definitive effective treatments. It’s mind boggling. One of his consultants said that it is like being on a ship in the middle of the ocean, waiting for the wind to catch the sail. They don’t know when the wind will ever come and the boat is drifting in any direction until it does. It’s true, it’s just what it is like.

  

2pm The results of Sam’s MRI weren’t great but they could have been worse. Good news was that his brain swelling has reduced which I am incredibly thankful for. However, it is clear he has lesions on his brain i.e. brain damage. Whilst I don’t want Sam to have any brain damage, as long as I get him home, I can cope with anything. I have already started planning in my head that we will need to move home to a bungalow and I will leave job to be his full-time carer. I absolutely do not want anyone looking after my boy apart from me. All this is going on in my head on top of everything else. I am jumping ahead of myself, but I can’t help it, I need a plan for us when we finally get out of this nightmare.

 

Sam’s seizures do appear to be lessening slightly, but there is still a long way to go. When his brain waves are suppressed we should be seeing a flat line on screen, and any brain wave activity should be low and rounded. But when Sam does have brain wave activity it is high and spiky. What on earth is going on??? We are absolutely addicted to looking at the CFAM monitor; it shows his brain waves in real time. We take photos of the monitor, we record it, we get excited when we see suppression, we despair when we see seizure activity or unusual brain waves. You can see what a roller coaster it is, because on top of worrying about that, I worry about his blood pressure being a mean of 70 for his neuro protection, his oxygen sats, his heart rate being too low (as it has dropped to 58, apparently due to his magnesium) his C02 levels not being too high for neuro protection, how much of the toxic medications he is needing to retain brain suppression, his constipation, that fact he isn’t absorbing any food, his urine output being too high, infections, brain damage, his lack of ability to control his body temperature, the fact that his breathing tube sometimes pools a little bit of water, are people going to give up on Sam, and will we ever find an effective treatment to stop his seizures. I could go on, the list is utterly endless. It is no wonder I am sky high with anxiety and despair.

 

Sam’s sodium levels are still within the normal range, which is good news for his brain. His heart rate is low, but apparently this is due to the high dose of magnesium he is receiving, it’s another treatment being tried to stop his seizures. His magnesium blood levels are now in target range.

 

His horrible toxic drug thiopental was reduced overnight and he lost his brain suppression (no brain waves on his CFAM unit) but brain suppression came back. His thiopental is going to be held at the reduced level. They need to get him off it at quickly as possible. It is a nasty drug with lots of side effects if it is used for too long, it’s a case of needs must at the moment, we don’t have a choice of him being on it as nothing else is working.   

 

One of his brilliant nurses has made Sam a superhero eye mask to try and prevent his eyes from becoming dry. They are so wonderful with Sam, so caring and he makes a huge difference to me to see this level of kindness and care.

 

6pm My friends Emma, Sarah and Becky came over today to see me today. We have been firm friends since we were pregnant. They all love Sam so much. It was super lovely to see them. I think we were all in shock over what had happened to him. We walked to a local park around five/ten mins way. We didn’t walk far at all, however, when we were about 15 mins away from the hospital I needed to go back, I couldn’t stand being that far away from Sam. I hadn’t been that far away from him since he was admitted. My anxiety started to make me panic. I am incredibly grateful to see my girlies, and I am so thankful they came over.

 

11pm My sister brought tea over a bit later around 8pm and she brought it to our room, which is literally 30 seconds from the ward. I feel too exhausted to go downstairs into the carpark. When she left, I go back to see Sam. It is very peaceful at night watching Sam. The unit isn’t particularly busy so that is nice. I am reading Sam some new books that I bought. The problem with reading some of the story books he can read was they are only short so don’t last long. I therefore ordered some of the books that I loved to read as a child, and I would have started to read to Sam soon. I started with The Magic Faraway Tree. I’m loving reading it to him, it takes me back and feels just so comforting and safe. I hope Sam can hear me, but in honesty I doubt it as he is on super high levels on anesthetic and has ear plugs and ear defenders on. But I am hoping that somehow my very presence will help him and he will hear my voice. He would utterly love this book and I am regretting not reading it with him earlier.

 

As usual I help the nurse do his night time cares, including change his nappy, clean his eyes, put ointment in them to prevent them drying and put Vaseline on his lips. I put his baby lotion on him at every given opportunity, all over his body. I also help give him bed baths and help take the glue out of his hair from his electrodes that are attached to his head for his brain monitoring. They get replaced very few days, and a job I can do is remove the glue. Once I feel Sam is stable, I say his good night prayers with him, sing him his good night song, tell him how loved he is, and how proud we are of him. I also tell him that we will get through this, and not to worry he just needs to keep fighting.

 

I fall asleep exhausted.

 

Day 19 diary update will be out tomorrow. Until then I will leave you with these beautiful words.

 

~~~

He is in heaven,

Watching over me,

Sending me signs,

Sending me messages.

Giving me direction,

Giving me purpose,

Keeping me busy,

Making me feel loved,

Participating in miracles,

Laughing, smiling and giggling away

Waiting for the day when we will meet again.

~~~

Instagram Credit: Grief to Glorious Sun Folding

 

With love and thanks,

Sam's mummy