Day 14 of Sam's FIRES Diary
Monday 5 April 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

Extracts taken from diary and text updates sent to family and friends.

 

Just a short diary update for today.

 

12pm Sam had a stable night which I am gratefully appreciative for, after the stressful day yesterday. Sam is clearly fighting, so that means we are, and we are moving onwards and upwards.

 

The team thought his right pupil had a minor reaction last night. A few of the medical staff also checked, but it was confirmed that there was no reaction to light in either of his pupils. I am absolutely gutted, it is a massive blow.

 

We have got a new consultant who we really like. He seems really motivated to find the magic bullet to stop his seizures and it feels that he has got a slightly different approach. From a personal point of view, at this moment in time, I think this is just what we need. My head and heart has taken a total battering and I need someone to give me a fresh injection of genuine hope and to give me some positivity. In all honestly I need it to keep me going. If I don’t have hope, then I go in a downwards spiral. And believe me, with everything that is being thrown at Sam it is easy to go into dark places. But that being said, I am not in denial about how critically ill Sam is, I just need to believe that we can beat this, and I need to feel genuine positivity from his treating team as well. Not that I am complaining about his wonderful consultants, they are all fantastic. I just think at this particular moment in time we have found a consultant who matches our temporary mood and needs.

 

2pm I feel the team are throwing everything at it. Sam is having his final plasma exchange today and a litre of blood. So there is a hive of activity around Sam’s bed whilst this is going on. He has been started on cortisone, apparently that will help him retain sodium, I have no idea how this works. But it seems to have helped as his sodium has improved to normal levels, which is great news. Sam's seizures are still ongoing, we haven't yet got the magic burst suppression that we need. We are still glued to his monitor which monitors his brain waves. He continues to have his lovely physio visits twice a day. They are still brilliant with Sam, such a great team. They not only keep his chest clear of mucus to prevent lung infections and help him breath but they also monitor him for muscle tone in his legs and arms etc to make sure he still has a full range of movement. They also check him for pressure sores as well and do leg/feet exercises with him. The physio have shown me what exercises I can do, such as stretch his feet etc to prevent his tendons from tightening. I can do all this whilst I put his body lotion on. Currently he has a great range in movement which is great news. See, Sam is so awesome, what fighter!

 

4pm Sam’s temperature seems to have become a lot more stable which is great. They have replaced a couple of his lines as well to make them more stable. He had the consultant at his bedside throughout his plasma exchange, so it makes me feel that he is being so well cared for and makes me feel that he is safe. I cannot begin to explain how important this is to me, and it reduces my anxiety massively. I feel like I can breath. Sam seems stable currently, and I am so thankful for this.

 

11pm Today feels like it has been so hectic, but all the days are. We had a quick lunch and tea break with my mum and sister. We also had Daisy cuddles this evening as well. I am praying for a stable night. Once I feel my precious boy is stable, we say our goodnight prayers, sing our goodnight song, tell him how loved he is, and I then finally say goodnight to my precious boy leaving him with his night time nurse mummies.

 

Day 15 diary update will be out tomorrow. Until then I will leave you with the beautiful words below. And, I can category say that these words are so true for many of my friends and supporters who have only known Sam since he died. They actually feel like they physically met him as we talk about him all the time, and include him <3

 

~~~

Never stop talking about them,
Never stop sharing memories of them,
Never stop including them,
So the people that never had the chance to physically meet them
Feel like they did

~~~

Instagram Credit: Grief to Glorious Unfolding

 

Photo taken by the lovely Kristen Duffy, when Sam was around three months old.

 

With love and thanks,

Sam's mummy