Day 7 of Sam's FIRES Diary
- Monday 29 March 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

9am Woke up feeling sick with nerves. Today is a big day as Sam is due to have his MRI scan at 2pm. We have everything crossed that it can go ahead. The medical team will make a decision on whether they think he is stable enough to go.

I am struggling with Sam being in the main ward. A patient has a big TV on, and I can hear music, laughing etc. I feel so so selfish and a horrible person for saying it but I don’t want to hear it, I don’t want to feel like life is just going on when my boy is fighting for his life. I am trying my best to zone it out and get used to it. But it is very very difficult.

The nurses let us be involved in Sam’s care as much as we want. We can help wash him, brush his teeth, put vaseline on his lips as they get very dry from being intubated, put cream in his eyes as they get dry as well and also help change his nappy. I haven’t been brushing his teeth as frightened to death of moving his breathing tube. They have also told me to moisturize him. It is so important to keep his skin in good condition as it helps prevent bed sores and prevents it becoming cracked and also helps with circulation. That sounds like a challenge to me, my boy will have the best moisturized skin ever seen in PCCU. I have asked mum to bring our Child Farm moisturizer products at home into PCCU, we have used them since Sam was a baby.

Last night made my heart sing. The nurses have made and put up Spiderman bunting above his bed with his name on. They are so so amazing and caring. It has really lifted me to see this and Sam would love it! They have also put a Tonibox by Sam’s bed as well which has some fabulous Julia Donaldson story books on it. I am so pleased as Sam loves these books and we have a set of her audiobooks which we play in the car. We can now just keep playing a book, it will be such a familiar sound for him. We are very grateful for it and it blocks out some of the sound in the room.

Last night they also confirmed he is tolerating his feeds, which is brilliant news. Sam had a stable night. He has now had his transfusion to top up his red blood cells which were low. It went well and he hasn’t had an adverse reaction to it. This has helped support his blood pressure which was up and down yesterday and made me really on edge. He has a clever device inserted into his arterial line which gives automated blood pressure readings. Yesterday I couldn’t stop watching it as I panic when it goes to low and panic when it goes to high. They were having to use adrenaline to lift it a lot yesterday.

12pm The MRI has been moved to 3.30pm which is slightly frustrating as I am thinking we probably won’t get the results now until tomorrow. But they have given us the biggest time slot, so actually for Sam it is the right thing.
 

Ordered some new reading books for Sam as I really like reading to him and I am running out of books to read. My brother also text me to say he also ordered some books for Sam as well which is lovely! Have ordered a portable CD player so I can play some films and music to Sam, the ones he is familiar with.


Not sure if his seizures are reducing or not, but maybe a slight improvement, but that is because of all the medications. I am really disappointed that the steroids clearly haven’t been the magic bullet that I had hoped, I thought they would have had more of an impact on reducing his seizures.  They had to put his oxygen up as he is rattling a bit, but he has got the wonderful physio team taking care of him. One thing for sure is that Sam is a fighter.

 

1pm The nurse who is preparing Sam for transfer is fabulous. Sam needs a special nurse who is trained in transporting patients. Really like them, they seem so efficient and caring. Love the way they explain to me exactly what they are doing to Sam.

 

They are going to try therapeutic hyperthermia today as well. They will aim to reduce his body temperature to 34 degrees. One of his consultants had some success using it, whilst this was only temporarily effective it bought precious time. Sam is also moving to a keto diet as that may help with his seizures. A dietician came to see him and they worked out the feed he will need.

 

8pm They managed to do his MRI. It was a mammoth operation and so complex. I hated it and I felt so on edge in case something went wrong. The nurse we had was absolutely brilliant at calming me down. They talked me through everything, double checked everything and was amazingly calm. It really helped me and made me feel Sam was in such safe hands.

 

Sam had to be moved between four different ventilators, PCCU to a mobile one, then to the MRI waiting room one, and then to the MRI one. I couldn’t watch when they swopped him between ventilators. We were by his side every step of the way, apart from when he went in the lift as there wasn’t enough room for us as well. He had a medical team of four with him, including a consultant. There was a clinician we met in the MRI as well. The team that Sam had around him were absolutely first class, and I feel incredibly grateful he is having such excellent care.

 

It was very emotional as my mum managed to have a peak of Sam as he was being walked to the MRI. She was stood in the corridor as we walked passed, we paused for 30 seconds so she could see him. Because of covid restrictions the only people normally allowed to visit is parents. It is so tough on everyone.

 

MRI Update: We weren’t back on the ward long before the results had come through. I was shocked as I thought we wouldn’t get them until tomorrow. It hasn’t given an underlying cause. But what they saw we are devastated by, and I am in utter shock to be honest. The seizures are damaging his brain. Whether it is permanent or not we don’t know. We were told some of the damage was near Sam’s brain stem...words are insufficient to describe how I feel.

 

10pm The consultants have confirmed they are going to increase his midazolam to as high as they can go. The anakinra has to go to a panel to be approved for Sam, hopefully we may even be able to use it tomorrow. We also mentioned plasma exchange to the consultant, as that can help with immune reactions, but apparently this is an aggressive treatment so they would like to try others first. His brain wave patterns look a bit better but his is Midaz and ketamine are now on super high levels (he is on many more drugs as well). They are throwing everything at this. But they need to, Sam's brain is being damaged. 

 

I feel very low and desperate tonight I can’t believe how much our life has changed in the space of seven days. We need to try and digest the MRI news. How is a parent meant to cope with this?

 

Day 8 diary update will be out tomorrow. Until then I will leave you with this...

~~~
What if they ran forward as fast as they could,

Smiling and joyful when they saw the beauty of heaven.

~~~
Instagram Credit: Grief to Glorious Unfolding

With love and thanks,

Sam's mummy <3