Day 32 of Sam in Paediatric Critical Care
- 4 days ago
- 6 min read
Updated: 3 days ago
Location: Nottingham QMC, Paediatric Critical Care Unit
Date: Friday 23 April 2021
A Mother's FIRES Diary
Day 32 of Sam being in an induced coma, as doctors fight to stop his relentless seizures. They came out of nowhere after what appeared to be a mild virus. They have named this FIRES (Febrile Infection Related Epilepsy Syndrome)
As I share this diary with you all this evening some five years on from Sam's fight with FIRES - my heart is breaking, and I sit here with tears running down my cheeks. I cannot believe what my son and my family had to go through - it is utterly horrific. It feels so cruel, so unfair… but I remind myself this is why I keep sharing - because no family should ever have to go through this…
7am: Daisy, Sam’s dog, made her first visit to see him yesterday. She has been officially named Treatment 18. We had to go through a number of checks to make this happen, but Sam's wonderful consultant arranged it all. And Daisy blew all of us away including Sam’s doctors and nurses. She was the true definition of AWESOME, a true superhero, just like her brother Sam.
Daisy strode into Sam’s room as cool as a cucumber and so very calm. She wasn’t bothered about the strange noises and smells. We were hoping that she may be a miracle treatment for Sam and would bring him comfort – even though he is in an induced coma. I don’t think she actually recognised Sam at first - he most likely didn’t smell like her boy. But once she got her nose near his face, she definitely recognised him, and we managed to move Sam’s hand to stroke her head. It was the most wonderful, uplifting and emotional sight to see. Daisy will be visiting Sam as much as we want her to.
For those that don’t know, Daisy is a black labrador, and Sam’s dog. Sam and Daisy were joined at the hip, partners in crime, and loved each other passionately. Daisy joined our family when she was eight weeks old.
Note for readers. Five years on, Sam would be so very proud of Daisy, as she is now a trained Therapy Dog for his charity Sam’s Superheroes, visiting 7 schools a week and supporting over 50 children. And it all started from this beautiful moment when she visited Sam.
9am Late yesterday, Sam was put back onto his isoflurane gas (an anaesthetic gas used in theatre), which had to be temporarily removed as he could only be on it for 72 hours. His team needed specialist advice about the use of isoflurane more longer-term. Isoflurane had proved to the most effective treatment so far for Sam - in terms of reducing his seizures. Being on it meant we could reduce the amount of drugs he is on, particularly those which should only be used in the short-term due to their toxicity levels such as thiopental. Good news, Sam’s team found out he can be on it more longer-term, but it needs to be at reduced levels.
One of the hardest parts of using isoflurane gas is that his humidifier can't be used. This normally helps to loosen the secretions in his lungs, so without it, both his lung and mouth secretions become thick and sticky. They clog his lungs, making them harder to suction, affecting his oxygen levels and increasing the risk of infection. But today brought a small piece of hope - his team found a way to use the humidifier alongside the isoflurane, which feels like such a relief.
This morning, we were woken up at 6am with a phone call from the critical care unit. It is the exact reason why I sleep in my clothes, so I can make a quick sprint to the unit. It is my worst fear that Sam suddenly deteriorates when I am not there.
Sam has complications. His pupils have gone uneven and his blood has thickened considerably; it is thick with lipids. Uneven pupils can be an indicator of a blood clot on his brain so they wanted to take him for a CT scan. However, a decision has not yet been made as Sam is on his isoflurane gas and therefore, they are unable to take him for a scan whilst he is on it as it needs an anaesthetic machine to deliver it, and that is not transportable - so they need a plan. I have mentioned to his team that he has had uneven pupils before, but not the blood thickening and I do my best not to panic.
5pm: Sam didn’t end up going for a scan - his pupils returned to their normal size. They think his ketogenic diet may be impacting his lipids and so he will sadly have to go back onto normal feeds. However, they don’t think the ketogenic diet has worked for Sam in terms of reducing his seizures, so I try not to be too disappointed with this.
6pm His team had a meeting with Great Ormond Street Hospital (GOSH) at 5.30pm about Sam’s care, and we have a new strategy. I am really pleased GOSH are supporting Sam’s care, as the more eyes we have on this the better, and they may just suggest a treatment we haven’t yet tried. GOSH have agreed that trying for another round of Anakinra (which is used for rheumatoid arthritis and suppresses the immune system) is a good idea. I had mentioned this to the team the other day whether we could try it again, as I thought his condition may have evolved and his brain may be more open to the effects of Anakinra.
They have also agreed a new strategy for Sam. They are going to try some more meds over the next week, but these will be given at super super, super, super high levels – higher than they ever normally would. This is purely because of the critical nature of Sam’s condition. However, Sam will be closely monitored. A clinical pharmacist is part of the critical care team, so I know he is receiving the best care. I am under no illusion the seriousness of Sam’s condition and the fact we are going onto the extreme edges of drug dosing makes that resoundingly clear.
4pm: As Sam’s team have now opened up visiting to our wider family we have more people visiting him. He is in a side room on his own. As Sam's close family is now visiting, and with Sam's dad now having to work during the day, I take the opportunity to have a short sleep knowing that Sam is being smothered with love. Ordinarily I would not leave him, aside from ten minutes grabbing lunch and dinner. But now family are allowed to visit, I feel I can nip to my room (literally 30 seconds from the ward) to try and grab an hour to sleep. I feel utterly exhausted and can barely think straight, but I feel safe in the knowledge that Sam will be surrounded with people who love him so so much.
11pm: I am learning that each day brings a new set of challenges to overcome. I haven’t sent many updates to friends over the past few days, as I am finding the days so busy and come bedtime I am too exhausted to think, although I remind myself that Sam is doing all the hard work.
Once I feel Sam is stable, I say our good night prayers together, sing him his good night song, tell him how loved he is, and how proud we are of him and I gently reassure him mummy will never leave his side, and we will get through this. He just needs to keep fighting. I then head to bed.
In bed, I think to myself that we are not going to give up without an almighty fight. Sam is such a little fighter; he is teaching me so much. I need to follow Sam’s lead and fight just as hard as he is. I am so proud of my boy.
As like every night, I silently cry and will myself to sleep by praying and hoping for Sam to have a brighter day tomorrow and for a miracle to happen.
Our next diary update will be out shortly. Until then I will leave you with this...
The most important mark I will leave on this world is my son.
Credit: Sarah Shahi
💥WHY WE ARE SHARING THESE DIARIES💥
There is currently no cure for NORSE and FIRES, no consistently effective treatment, and the cause is still not fully understood. Around one in five people do not survive the acute stage. While recovery is possible, many survivors are left with significant lifelong neurological disability, chronic epilepsy, and complex care needs.
Five year old Sam was a healthy, happy and loving little boy from Derby in the UK. He was rarely ill. Just after his fifth birthday, on 22 March 2021 at 8pm, the fight of our lives began when Sam had his first ever seizure after what appeared to be a routine viral illness, and our world changed forever.
With love and thanks,
Sam's mama bear 🩷
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