Day 16 of Sam's FIRES Diary
Wednesday 7 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.

 

10am I finally got to sleep last night. It is MRI day and I feel sick with nerves. It is booked for 1pm. I don’t want him to go. Sam’s urine output is still quite high and his team have contacted the endocrine team as they think they may be something wrong with Sam’s hormones which is making him urinate so much. However, his sodium is within threshold and relatively stable so that is good news. One of Sam’s pupils is reacting slightly, so that is positive.

My sister and Sharon are aiming to get here early, for 12pm as they may be able to get a glimpse of Sam as he comes out of critical care on his way to the MRI. However, I am not too sure we will even be able to stop for a moment. I just want to get him there and back ASAP.

12pm Had a bit of push back to Sam’s team, I’m in mama bear mode. I do feel sorry for them having to deal with parents. But I just have a bad feeling about the MRI scan, I don’t want him to go. I feel all we will get is yet another negative outcome, so what is the point? Is his treatment plan going to change? I don’t thinks so. But is there a danger people will get more pessimistic? I think so, yes. And I have noticed that when he goes for a scan we seem to have a period of instability for a while, and I just can’t take it. I HATE it. Also, he won’t have a consultant going with him.

So, I said that I didn’t want him to go for his MRI (In my head I am sure they can override me), and explained why. And there is no way I want him to go without a consultant. It was pointed out to me this would mean a consultant will be taken off the ward, and they may be needed. My point is, my boy may need them too, so sorry but in my eyes my boy comes first. The entire critical care team are brilliant, but my gut feeling on this was Sam needed a consultant to go with him. I wasn’t trying to be difficult, I just need to feel that my boy was safe, he is so up and down. My anxiety is absolutely sky high, I don’t think it could get any worse. I am literally shaking with nerves.

There was a conversation along the lines of "from one parent to another can you please let him go for his MRI". Inside I was fuming…it didn't make me think I should. I was just thinking your child isn’t in critical care fighting for his life, mine is. No-one has any idea what-so-ever what it is like being a parent in this situation, unless your child has been afflicted with FIRES you have no idea. It is UNBEARABLE. I am desperate, absolutely desperate for him to beat this, to make sure everything is being done to get him well. And I am frantic, probably bordering on the obsessive thinking people may give up on him if he has another bad MRI as I am told every single day how critically ill he is. I am utterly sick of hearing it. I don’t want to hear how ill he is, I get it. And therefore, I can’t cope with another bad MRI scan; I am so fearful it will be more doom and gloom.

I think Sam’s consultant realized how desperate and anxious I was as they said they would go with Sam, and don’t worry. The utter relief I felt, I could have cried, I think I did. My anxiety started to go down slightly. I would have to deal with the results of the MRI when they came through.
I think Sam’s consultant realized how desperate and anxious I was as they said they would go with Sam, and don’t worry. The utter relief I felt, I could have cried, I think I did. My anxiety started to go down slightly. I would have to deal with the results of the MRI when they came through.

Please let me emphasise I am not in anyway being critical of any of the medical team, if anything I am showing how fantastic they were and are. They are utterly brilliant and incredibly caring, true superheroes. They listened so much and gave me so much comfort when I was in despair. I would not have wanted Sam in any other hospital. Sam was receiving world leading care, and I will be forever grateful to them all for the way they looked after Sam, me and his dad. And as I have said previously the medical team (nurses, registrars, consultants etc.) not only have to treat critically ill kids but they also have to manage parents like me at the most stressful and upsetting time in their lives. They most likely have sky high anxiety, are terrified and experiencing massive roller coaster of emotions. It has to be the most toughest job out there. This diary blog is simply a mum sharing her inner-most thoughts and feelings at the worst time of her life. It was words that went unsaid at the time and I am sharing them now.


5pm Sam’s prep for the MRI went well. The team are very methodical in their approach and triple check everything. They have an additional trolley with equipment and ruck sacks that go with them in case anything goes wrong on route. We manage to coordinate for my family to be stood in the corridor so they could get a little peak of Sam on his bed as we went passed. It was incredibly emotional for them to see Sam. We walked Sam to the lift and then Sam and his team went in one lift and we walked to another one and met them on the ground floor and walked to the MRI together.

When you get to the MRI you go into a holding area, and Sam goes from his portable ventilator to holding area one, and then he goes onto the one in the MRI. Whilst he was in the MRI one of his alarms went off and they had to go in. I felt utterly sick with worry. But I can’t begin to tell you how relieved I was that he had his consultant with him.

10pm Sam has been a bit unstable since he came back, but he was a bit short of fluids. They have been giving him some more. His urine is much the same but they aren’t too worried about that as long as the calcium stays at a high enough level. We should get the results of the MRI tomorrow. I feel utterly exhausted and ready for bed.

Day 17 diary update will be out tomorrow. Until then I will leave you with these beautiful words.

 

~~~

Remember,

 

LOVE is an energy, so powerful, so all-consuming that when the person you felt all that love for is not here, you are a vessel filled with a boundless source of power that has no-where to go.

 

HARNESS THE POWER.

 

Use the love. Carry them with you in all that you do, using their love as the source. Use it to burn even more brightly, love more deeply and live with more purpose than you could ever have imagined.

 

MAKE THEM COUNT.

 

Remember grief is the price you pay for a love divine. The stronger the love, the deeper the grief. But love, LOVE will always win in the end.

~~~

Credit: Donna Ashworth, When you have lost someone you love.

 

With love and continued thanks,

Sam's mummy 

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