Day 13 of Sam's FIRES Diary
Thursday 4 April 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

10am My sister and mum came over early this morning. We woke up to the news that Sam had not had a good night, he may need an emergency CT scan. It is so horrible thinking that whilst I have been asleep Sam has been fighting so hard. What on earth happened in the space of five hours? You can see how quickly things can changed. My heart is in pieces.

 

Sam’s excessive urination is a massive problem. He is losing too much sodium and other electrolytes. He is suffering from cerebral salt wastage and his medical team have been trying to keep on top of it by using higher strength saline solution and also a plasma light solution to try and replace his salts. They are monitoring him closely. This morning I was also devastated to hear that his pupils had stopped reacting overnight as well. His team think this is from additional pressure on the brain caused by the salt imbalance. They are considering taking Sam for an emergency CT scan.

 

Whilst we were aware that Sam had been struggling with salt retention for the past few days it looks like it has suddenly got worse. Sam’s dad did ask the question whether it could have been caused by the plasma exchange, and we were told that wasn’t the cause. Basically the seizures are the issue and could be causing brain damage, they have to be stopped.

 

Further blood gases have been done and his sodium level have come back up to normal levels which is good, the protective measures the team put in place are working.

 

11am After discussion between the paediatric critical care (PCC) team and his neurologist Sam is going to have a CT scan within the hour.

 

3pm Sam’s neurologist confirmed the CT scan showed there is some brain swelling, which is devastating. He is concerned as Sam’s eyes aren’t reacting. They are going to take a number of neuro protective measures such as increase his salt content to try and dehydrate the brain, use a steroid to reduce his blood pressure, increase his ventilation rate to reduce his Co2 levels in the blood, reduce his heart rate and body temperature further, make sure he is sat up in bed and his head is straight not to one side. They have stopped Sam breathing for himself (as in triggering a breath) so they can manage his Co2 levels. The next few hours are critical.

 

I am in a mess. How the f### are you meant to take all this in and remain calm and not collapse in a heap screaming? This is just too much for a parent. Our whole world is in this bed, this is the little boy who we love more than life itself. We have also been told that as more patients are coming onto the ward, myself and Sam’s dad need to rotate being with Sam. It is due to covid restrictions. They have been very lenient with us so far, allowing us to visit together, so we understand.

 

5pm We had a update from one of his PCC consultants. They are doing all they can for Sam to reduce his brain swelling. He said in extreme circumstances the brain can swell and push down on the spinal cord. They don’t know the extent of the brain swelling and how it is impacting Sam so they have asked a neurosurgeon for advice and they are thinking of implanting a pressure transmitter in his head so they can get a real time pressure reading and that will give them better insights into the extent of his brain swelling.  He confirmed the neuro protective protocol is in place and we may have further updates in a few hours.

 

The neuro team have said there was nothing they could do, it is too far gone. I feel angry and push back as this feels like they are giving up on Sam. But Sam’s medical team reassure me that isn’t the case. I realise now this is just an instinctive reaction from a momma bear fighting for her cub. But I was angry and upset and it made me feel like I need to step up a gear. I feel like I want to shout from the rooftops “don’t ever give up on my boy, can’t you see he is the most amazing boy this world has ever known” or I need some cheer leaders chanting “Don’t give up on Sam” on repeat. It sounds crazy I know. I am annoyed with myself as I wish I had actually spoken to the neuro team as then they could have realised how much we love Sam, and how they need to do every single possible thing to save him.

 

What makes everything doubly worse is everyone we meet is wearing face masks. You are having these critical conversations about saving our son’s life with someone wearing a mask, all you can see are their eyes. I am the sort of person who needs to see people’s facial expressions, it helps me communicate, it helps me trust people, it helps me work out if they genuinely care, are they emotionally connected to my son etc. It is exceptionally hard with masks on, though I fully understand why they are needed in these Covid times.

 

8pm Sam is still constipated, and he is having to take lots of laxatives. I am desperate for him to have a poo as he can’t eat if he can’t poo and that will effect his ketosis we are trying to achieve. Sam had his plasma exchange today again, and it went well, so a bit of positive news. I seem to have stepped up a gear again, I am asking for positive thoughts only off everyone, no negativity around my boy. We will win this, I know we will. Come on Sam, we can do this. Mummy, Daddy and everyone else is fighting with you.

 

My brother in law drove my cousin Sharon over to Derby from Blackpool today and is taking my mum home for a bit. Sam’s uncle Gareth sent through another story, this time King Hugo’s Huge Ego. His story telling made me smile.

 

I have been helping with Sam’s cares again today and making sure that I moisturize his body as much as I can. It makes me feel useful and that I am doing something for him. I can’t begin to tell you how helpless you feel as a parent when your child is in critical care.

 

11.30pm Sat watching Sam and his monitor. Looking at his blood pressure and his Co2 levels. I have now become obsessed with them to make sure they don’t exceed the thresholds for his neuro protection protocol. I have replied to texts from my wonderful friend Amanda who has been asking after him. She is holding my hand every single step of the way and has asked me to give Sam a stroke from her and Paigey. Which I of course do.

 

Once I feel Sam is in a settled state, just after midnight I say Sam’s prayers with him, give him his good night kiss, and tell him how loved he is. And I leave him with his nurse mummy. I can’t leave him knowing that he is not settled, or I wouldn’t sleep. Whilst I am trying to be positive, once I leave Sam I go to bed feeling utterly exhausted, anxious, petrified, helpless and in despair. I hope and pray I will wake up to brighter news.

 

Day 14 diary update will be out tomorrow. Until then I will leave you with these beautiful words

~~~

They are on the other side of a thin veil between heaven and earth,

Telling everyone how much they love us,

Whispering, “keep going, you are doing amazing!”

~~~

Instagram Credit: Grief to Glorious Unfolding

 

With love and thanks,

Sam's mummy