Day: 6

Date: Sunday 28 March 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit


10:30am As the main ward is more noisy than the isolation room Sam is wearing ear plugs as we think noise and touch may be a trigger for his seizures. Last night the nurse also put ear defenders on Sam as well. They are just so caring, and I deeply appreciate the level of care and attention they are giving him, I feel he is in safe hands. Sam is positioned so he is slightly sitting up in bed, and he has a teddy under each arm. For the benefit of those reading this, one of the teddies is his doggie called ‘spot’ which you would be forgiven in thinking had spots on it! But NO….it is actually a corgi Sam bought when we visited Sandringham gift shop in Norfolk on holiday with Becky and Holly. Spot’s home is now my bed.


There is no real improvement in Sam today. His oxygen levels have fallen, he keeps dipping to 92%. Another additional thing to worry about. He has had a physio visit and they have taken secretion samples and they may put him on a nebulizer as well to loosen his secretions. The physio makes two visits a day and they are coming back this afternoon. Yet again another team I am really impressed with, really efficient and have such a lovely caring manner about them. And yet again, I love the way they greet Sam when they walk in and talk to him when they are doing all their lung exercises with him. I had absolutely no idea how important a physio’s role was in critical care until we arrived here. I am showing my total ignorance, but I have always seen them as just dealing with muscles, bones etc. but they also specialize in respiratory/lung management. When someone is intubated they need help clearing secretions or these build up in their airways and can cause infections or impact oxygenation as they can’t cough etc. They carry out all sorts of techniques and simulate coughing, vibration etc. They are seen as the real experts in this area.


The registrar said if the steroids aren’t successful in dampening down his immune system there are other drugs they can use but they are at the end of the spectrum. They might use Anakinra (which is used to treat rheumatoid arthritis) which helps to suppress the immune system and may be more effective than steroids, but we will see if steroids work first. The steroids have only been in his system for 12 hours. Before they use Anakinra the PCCU consultant team will discuss with the neuro team. It is a really multi-disciplinary effort in looking after Sam.


4pm I have been reading Sam a story the medical team are doing an amazing job taking care of him and Sam is continuing to fight as hard as he can. I am beyond proud of him.


6.30pm I went for a lie down, and slept for an hour, I feel exhausted, Sam’s dad was with him. We try and make sure he has always got one of us with him at all times. We have got into a routine of getting lunch around 1ish (my mum and sister bring) and dinner around 7.30pm. But my appetite has totally gone, I just can’t eat when I am so worried.   


9pm Sam’s temperature is still elevated and it keeps trying to rise. The cooling machine isn’t working so they are changing it for another one. They don’t know if the temperature rise is from an infection or from his brain being unable to regulate his temperature. I think it is his brain as before his very first seizure when he was ill over the weekend, his temperature was just erratic it was just so so weird. It kept shooting up sky high, and whilst it initially came down with ibuprofen and paracetamol it didn’t stay down for long. However, they are going to use different antibiotics and send off a set of blood, urine, secretions from his lungs for analysis.


Sam’s red blood cell count is on the border line so they will give him transfusion today/tonight. He has had so much blood taken from him it is not surprising he needs some extra blood. I am sure he will feel a lot better from having one.  


To be honest it feels a really shitty day for Sam. I have barely texted any updates to my friends today. I feel incredibly low. There is maybe some positive news in that Sam’s seizures appear to be now sub-clinical ones (the sort you can’t see e.g. there is no physical body movement) which cause less trauma on the brain than clinical seizures (the ones you can see). He has been having a significant number of clinical seizures for five days. For the benefit of those reading uncontrolled clinical seizures for a long period of time can be harmful to brain cells e.g. cause brain damage. I had no idea of this prior to Sam being ill. But that is why the medical team were doing their utmost to try and stop the clinical seizures and throwing everything at it.  


11pm Each night I pray so hard and for so long for Sam to be healed, tonight will be no exception. I normally get to bed around 11pm, fall asleep by midnight and then wake up at 6am. I don’t get up immediately, I literally lie in bed paralysed with fear. We seem to have slotted into a routine of me phoning or texting Sam’s dad for an update as he normally gets on the ward super early around 5am. I don’t know why I do it but I think it is just so I can prepare myself before I go in. I can’t begin to explain the fear and despair I feel when I wake up in the morning. I am so frightened that he has got worse, but I also have this tiny little bit of hope inside of me that I may hear the news that I am so desperate to hear, they have found a miracle cure, they have found the elusive drug that stops his seizures. Or, today may just be the day we find the cure. I just need to hear the update from his dad before I physically go onto the ward so I can almost prepare myself mentally for the day ahead.


We still have everything crossed that Sam’s MRI will be able to take place tomorrow.


Day 7 diary update will be out tomorrow. Until then I will leave you with this...

After losing them,

It may feel like we have nothing left to fight for and no more purpose,

But, keeping their memory alive and telling their story,

Is one of the most important things we will ever do.

Instagram Credit: Grief to Glorious Unfolding

With love and thanks,

Sam's mummy <3