Day 32 of Sam's FIRES Diary

Friday 23 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.


For the benefit of readers, there is something that I haven’t shared with you yet. Daisy, Sam’s dog, made her first visit to see him yesterday. She has been officially named "Treatment 18". We had to go through some checks to make this happen so it could all be properly authorised. All I can say was she 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 see Sam 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. I don’t think she actually recognised Sam at first, but 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 very much Sam’s dog. Sam and Daisy were joined at the hip, partners in crime, and loved each other passionately. They also loved stomping around outside together finding the best sticks!  We got Daisy when she was eight weeks old in November 2019, six months after our old black labrador died. So Sam has always had a black labrador in his life. Daisy is now a Therapy Dog for Sam's charity, and it all started from this beautiful moment when she visited Sam.


9am Late yesterday, Sam was put back onto his isoflurane gas. His team wanted to get some specialist advice about the use of isoflurane gas more longer-term as this has proved to the most effective treatment so far for Sam in terms of reducing his seizures. It also means we can reduce the amount of drugs he is on, particularly those which should only be used in the short-term due to their level of toxicity such as thiopental. The team found out he can be on it more longer-term, but it needs to be on reduced levels.


One of the drawbacks of using the isoflurane gas had meant the humidifier couldn’t be used (to loosen his secretions) and so both his lung and mouth secretions went massively sticky. This is an issue as these secretions clog him up and when they are stick it makes them difficult to suction out of him, which can reduce his oxygen level and also create infections. But his team have found out that there is a way they can use the humidifier when he is on isoflurane, which is great news.


This morning, we were woken up at 6.30am with a phone call from the critical care unit. It is the exact reason why I sleep in 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. He has had some complications in the early hours as his pupils are uneven and his blood had thickened considerably, it was thick with lipids. This could indicate a blood clot on his brain so they want to take him for a CT scan, however a decision has not yet been made as Sam is on his isoflurane gas and they are unable to take him to a scan with him on it, so will 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 go for a scan, his pupils returned to his normal size. They think his ketogenic diet may be impacting his lipids and he will 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.


4pm As we have family visiting Sam now, and Sam’s dad is having to work during the day, I have taken the opportunity to have a short sleep knowing that Sam is being smothered with love. Ordinarily I would not leave him, aside from grabbing lunch and dinner. But now family are here I feel that I can just grab an hour to sleep, I feel utterly exhausted and can barely think straight. I feel safe in the knowledge that Sam will be surrounded with people who love him so so much.


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 they are supporting Sam’s care, as the more the better, and they may just come up with another treatment we haven’t yet tried. GOSH have agreed that trying for another round of Anakinra (which is used for rheumatoid arthritis and suppressed the immune system) is a good idea. I 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 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 high levels, more than they ever normally would. This is purely because of the situation we find ourselves in. Sam will be closely monitored, they have a clinical pharmacist in critical care, 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.   


11pm Amanda sent over some chocolates and a drawing from one of Sam’s friends. 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, although I remind myself that Sam is doing all the hard work.


Once I feel Sam is stable I head off to bed once 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. I gently reassure him mummy will never leave his side, we will get through this, and he just needs to keep fighting.


In bed I think to myself Sam and I are not going to give 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, I could cry. As like every night, I will myself to sleep by praying and hoping for Sam to have a brighter day tomorrow.  


Day 35 diary update will be out tomorrow. Until then I will leave you with these beautiful words.



Dogs have a way of finding the people who need them,

And filling an emptiness we didn't know we had 


Credit: Thom Jones, The Pugilist at Rest