Day 12 of Sam's FIRES Diary
Wednesday 3 April 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

Extracts taken from diary and text updates sent to family and friends.

 

12pm It’s a big day today, plasma exchange day. I woke up with a bit of hope in me, thinking maybe the plasma exchange will be the magic bullet Sam needs. He was fairly stable overnight. Sam is still wriggling about a bit, but as his neurologist said yesterday this is a good thing, even though we want his seizures to clearly stop. They are still very concerned about the fact the ongoing seizures may be causing brain damage, as I am.

 

We have a new nurse on today who we have never met before. But they are fabulous, I really like them! I am so grateful that we just keep getting them! Sam hasn’t had a poo for four days, which is slightly concerning as he is on the Ketogenic diet and we don’t want anything to impact that. He will be given more laxative today. The nurses gave Sam a bit of physio prior to the physio’s visiting to remove any secretions from his lungs.  He was needing a bit more oxygen so that should help that.

 

The plasma exchange team came onto the word at around 9am. The exchange itself takes around four hours. They have a specialist nurse delivering it, she is lovely and she used to work on PCCU so knows all the staff! She ticks all my boxes clearly very competent and compassionate, so my anxiety has slightly reduced! There is a lot of prep work to do before it starts.

 

Sam has a big machine next to his bed like a kidney dialysis machine. I think it works in a similar way. For the benefit of those reading this blog, in my layman’s understanding, Sam’s blood goes through the machine, a small amount at a time, and is separated so that the plasma can be discarded. The red and white cells are returned to Sam along with replacement plasma. Plasma is part of the blood and supports the circulation of red and while blood cells and platelets. It also contains antibodies, and in Sam’s case they think some of these antibodies have gone rogue and are causing his body to produce autoantibodies which attack healthy cells e.g. causing his seizures. It is hoped that the plasma exchange will stop this by removing this autoantibodies and stopping his body from producing any more.

 

There are risks with it, such as it suppresses his ability to fight infection, and particularly so as he is already been given drugs to suppress his immune system. But, that is all managed risk, and we are desperate, nothing else is working.

 

5pm As Sam has so many medications both his PCCU nurse and plasma exchange nurse worked non-stop between them. What a team they are. Honestly it blows my mind what nurses do, and the level of responsibility they have, and all the different calculations they do for medications.

 

The exchange seemed to go OK. However, his temperature spiked after it and his seizures increased so they are trying to get his temperature reduced. I hope they settle back down soon. We probably won’t see the effects of the exchange for a few days. He needs three rounds and he has a second round tomorrow.  

 

His neurologist visited him and they think his brain is not properly regulating his urine output which means he is urinating far too much. It literally non-stop and his catheter bag is just continually filling up. It worries me as he is weeing out all the stuff he needs. Everything is so frustrating, one step forwards two steps back. Honestly, I feel like screaming, please can someone just give my son a break?! I cannot emphasis enough what a fine balancing act everything is.

 

However, Sam’s neurologist said he was still relatively pleased with his seizure activity, but it’s a waiting game. They are testing him for another infection re his temperature. On the positive he did say that high BP in children isn’t like adults as they can tolerate is more because they have flexible arteries and veins as they are younger, which made me feel a bit better. He said try not to worry about the visible seizures too much as he isn’t. We just need to get on top of his vital stats and then I will feel a bit better. I do feel a bit more reassured from talking to him. But his blood pressure is still temperamental, and his urine output is crazy and I can’t help but worry. I am praying that this will all sort itself out soon.

 

Sam's Uncle Gareth, my brother, sent over some more videos with him wearing a hand puppet, “Mr Snake”. It was brilliant. Sam would love it. My brother’s videos are the only thing that are making me smile, but it is because I know Sam would love them. The photo to this blog post is from when we went to Denver to see Gareth, in September 2017. The photo is of him meeting us at the airport. We were travelling for over 12 hours, caught two flights and Sam was utterly amazing!

 

I ordered some additional books from Amazon at the end of March, which means I have new books to read to Sam. One of them is called ‘Awesome Jokes that Every 5 Year Old Should Know’. I figure Sam would absolutely love this one. We also ordered some more Julia Donaldson ones, the more unusual ones and the book “The World Made a Rainbow”. Reading to Sam keeps me grounded, it gives me something to do, and I pray and hope that Sam will somehow hear my voice, it will bypass his ear plugs and ear defenders.  I have also been reading to Sam the Charlie Mackesy Book; The Boy, The Mole, The Fox and the Horse. My beautiful friend Dawn gave it to me. This is such an incredible book and each page seems to resonate with me and I hope it does to Sam too.

 

9pm Once again, my sister, mum and Daisy came over with lunch and tea. They actually live in Blackpool but are staying at our home so they can support us. They drive over from Derby twice a day. We had salmon for tea this evening, but I can’t eat much again. However, it is like a having a Meals on Wheels service. We have a Birds lunch and then a hot dinner. We are incredibly grateful to them.

 

11pm All in all it has been a bitch of a day in all honesty. Every single day I feel truly broken, it is like my heart is in pieces. I used to worry when Sam got ill, I always catastrophized. But this is on a whole new level. My head is still trying to work out what the hell has happened, these things weren’t suppose to happen to us. Yet again, I pray so so hard to God before I fall asleep and beg and plead for a cure for Sam. As usual the only way I get to sleep is thinking tomorrow may just be brighter.

 

Day 13 diary update will be out tomorrow. Until then I will leave you with these beautiful snippets from Charlie Mackesy's book, the Boy, the Mole, the Fox and the Horse.

 

“What do we do when our hearts hurt?” Asked the boy,

“We wrap them with friendship, shared tears and time, till they wake hopeful and happy again”

 

“What do you want to be when you grow up?” said mole

“Kind” said the boy

 

“Why are we here?” said the boy

“To love and be loved” said the mole

 

“It’s getting harder” sighed the boy

“Then every step you take is a bigger victory” said the horse

 

“The funny thing is" said the mole

“The tiniest act of kindness can save a life"

With love and thanks,

Sam's mummy