Day 23 of Sam's FIRES Diary
Wednesday 14 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.

 

8am Woke up early. Today is MRI day, and feel sick with nerves. His scan is booked for 11.30am. As I have said previously, I hate MRI scan days for all manner of reasons. I hate the fact he has to leave the safety of paediatric critical care. He has to move between four different ventilators, with around a five minute journey from critical care to the MRI which involves lifts and I worry about something happening on route, or whilst he is in the scanner, and then I have the dreaded results to cope with. What happens if his brain damage has got worse, how will I cope?  I also worry about Sam’s routine being disrupted, as I do feel he always takes a dip when he comes back from the MRI. So you can see there is so much to worry about. Sam is accompanied by a highly trained team, who prepare Sam so well, but from a parent’s perspective it feels like hell.

 

Sam had a stable night his brain wave activity on the CFAM is looking good, with some burst suppression (a short burst of brain activity every four seconds) and also some full suppression (no brain wave activity). A reminder for the reader that we need to get burst brain suppression to try and rest and hopefully reset his brain, so when we reduce his sedation drugs his seizures won’t return.

 

Overnight they successfully weaned him off his midazolam and reduced his horrible thiopental. His sodium is now a high levels which is good. Sam needed a larger catheter put in last night as it kept blocking. That has allowed quite a bit of fluids to drain from Sam. He still hasn’t had a poo, but his tummy has got a bit flatter, and he is on a laxative through his feeding tube to his lower intestine. He is now on his IV ketogenic diet. However, that is only on 1:2 fat ratios so we would prefer him to be on a ketogenic diet through his feeding tube as that is a 1:4 ratio which will get him into ketosis quicker, to hopefully reduce his seizures. Before we put him on is feeding tube, we need to clear his poos first.

 

To put it all into perspective, Sam is now on eight IV lines, four days ago he was on 12. Sam was started on phenobarbital yesterday. They are looking to go to supra high levels of it with the aim that it will stop his seizures. The normal levels were 20 and they are looking at going to 100+. All his medication is on these crazy maximums. However, he seems to be initially responding even at a low level to his phenobarbital so that is good news. He has now had two out of his five courses of IVIG. I am hopeful that the IVIG and the phenobarbital may work.

 

2pm Sam We have returned from the MRI scan, and I found it as stressful as ever. Sam vitals seem to be all over the place though. I am worried. His nurse his brilliant and I am trying not to panic, but it is easier said than done. He just doesn’t seem to be his normal self, and I know that seems strange to say as he is in a coma, but I know all is stats, I know what the norm is for him.

 

4pm When we returned from the scan Sam’s blood pressure went scarily low. When I say scarily I thought this was it I was going to lose him. I cannot begin to express how scared I was. He had to have a whole lot of fluids pumped into him. He is also on 2.7 of adrenalin at the moment and it is still only just holding. He is on negative fluid intake for some reason, and I don’t know why. From my perspective I  don’t think we should have gone for the MRI today. This has also meant he has come off his parental fluids. 

 

I’m feeling like everything is against us. And this is why I hate MRI scan days, as he always seems to deteriorate when he comes back. How much can my boy and me take?

 

One of things I find really difficult is not being able to touch Sam, apart from carrying out cares. I can’t sit there and hold his hand, or stroke his forehead as we think touch is a potential stimulus for his seizures, together with sound. It’s like everything is against us. He wears ear plugs and ear defenders to try and block out noise.

 

8pm I feel utterly exhausted, I can’t even be bothered to go to the carpark to meet my sister for my tea so she comes to our hospital room. After my sister goes, I spend some more time reading to Sam. Reading gets me grounded, I love reading to Sam. And he now has a stash of new books I bought for him including the Magic Faraway Tree Collection, which is all three books. So I am reading him tales of Moon-Face, Saucepan Man and Silky the Fairy. He would utterly love it and I just hope that he can hear me. I am also reading him books from Percy the Park Keep collection. I like doing all the different voices. These books remind me of Sam for some reason, maybe its to do with Percy being so kind and caring, being outdoors and animals.

 

I need an early night, I am physically and mentally exhausted. When I am like that my anxiety goes sky high, and I feel impatient, emotional, unable to think straight, find it difficult to trust anyone and feel doom and gloom. I am no good to anyone when I am like that, let alone Sam. I know I need to sleep, and let his nurses do what they are good at, essentially keeping my son alive. He is in safe hands. 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.

 

As like every night, I will myself to sleep by praying and hoping for a brighter day tomorrow.

 

Day 24 diary update will be out tomorrow. Until then I will leave you with these beautiful words.

 

~~~

Your grief will trick you into thinking your pain is your connection,

It’s not.

YOUR CONNECTION…

is your memories,

Is in the things they taught you,

Is your ability to imagine what they would say and the advice they would give you,

Is in the moments you see something and think, they would have loved this,

Is visiting the placed you always went together,

Is the co-destiny you create when you visit the places they always wanted to see but never did,

Is knowing that you wouldn’t be the person you are had they not lived,

Is doing the f*ing hard work of trying to find a purpose and reason to continue life without them; as you know that is what they would want you to do,

It is every time you introduce someone new to them through your memories and stories, that they feel like they know them and met them.

~~~

Insta Credit: What’s Your Grief