A Mother's Love

- Day 2: Wednesday 24 March 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit


09:30 Last night was not great for Sam. He is still having seizures, but they are trying different medications to get on top of them. However, they initially seem to work and then they stop. Sam's medical team are monitoring his temperature and they are trying a different anti-seizure medication; an intravenous one but that effects is blood pressure so then he needs another medication to counter that. He has got electrodes on his head now recording his brain activity. He also has a camera pointed at him to enable them to record and monitor his clinical seizures. He has an MRI and EEG booked for today. I’m struggling to stay positive as every time I do it gets blown. I am a bag of nerves, even a bleep on his machine turns me into a mess. I am going to doom and gloom all the time and I wish I didn’t. I need to be strong for Sam.


18:30 So disappointed, he couldn't have an MRI or EEG as he is not stable enough with his seizures. We are utterly terrified. They are struggling to get him stable and to stop seizing. They have a strict protocol of anti-seizure medication and they are making their way down the list. Just spoken to the consultant working this evening and they are changing to a new drug tonight. Frightened to death of it making his seizures worse or we try another medication that works initially and then it stops and he starts seizing again. They said Sam appears to be most unusual, most children they would have got stable by now.


I was trying to be positive this afternoon but feel I have come crashing down. The fear of not finding anything to control them is the most frightening thing I have ever experienced and feels like my heart is being stabbed a million times over, I can’t even begin to explain. I have been reading stories to him but had to come away once I had talked to the consultant I felt too upset and couldn’t stop crying.


They are thinking meningitis is the most probable cause, but they are not sure if its viral or bacterial; they are still trying to understand it.


I feel so up and down. I am literally in bits on minute and then trying to be strong and read Sam stories and be positive. But then things just keep popping my positivity bubble like when talking to the consultant. Then I am just too upset to even sit with Sam, where I should be. I just want to pull a duvet over my head and hide until someone comes to find me and says “Rachel, Sam’s going to be ok, it’s working”. I truly do not know how to cope with this.


They are growing the cultures for the lumbar puncture. The sample wasn’t ideal apparently, it had a bit of blood in it. There were some white blood cells in it though which indicates infection. They are doing some further tests. I am going through a stage of negativity at the moment, it is so hard to pick myself up.  


22:00 We have just read Sam a bedtime story as we are trying to keep to his usual routine, albeit later than normal. He has a ton of drugs in his system and is sedated to basically the level of a general anesthetic, alongside trying new anti-seizure drugs. They are trying to reset his brain, though he is still having some seizure activity.


Mum and Rhi came this afternoon and also tonight. I felt strong this afternoon and then I went massively downhill late afternoon and crying down the phone. They were very worried so came this evening. I feel vvvvvv low about it all and finding it hard to find any positivity which I know I MUST to do for SAM. Every mum instinct in my body is crying out to help Sam, but I can’t. I can't make him better, it is excruciating. I just want to take over and say for goodness sake leave him alone, I will sort it...but that is just not possible.


Day 3 update will be tomorrow. Until then I will leave you with this beautiful thought...




When they speak of us in heaven,

They proudly point our way so everyone there knows we belong to them. 



With much love,


Sam's mummy