Day 3

A Mother's Love

- Thursday 25 March 2021

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

08:00 Sam had a fair night. He is sedated to the level of a general anesthetic, he can’t really be sedated any further. They are still trying to rest his brain, so it can hopefully reset and stop the seizures. He is still having slight seizures, they tried to reduce his meds but had to increase them again as he started seizing more. They have had to adjust his potassium levels but they are using the same access point as his adrenalin so that makes his blood pressure drop as it interferes with it. So that is a new worry for me to horrendously and irrationally cling onto. They put another canular in today to give an additional access point.

I find getting up in the mornings very difficult. I am terrified to find out that Sam has got worse, or that he is not getting any better. I am beside myself. All I want to do is sleep. Sleep until it is all over and Sam is better and waking up. I am struggling to cope with watching him like this, and every alarm going off sends my anxiety to a new level, I can barely breath. Then I feel terrible as I need to be strong and be by his side, comforting him and letting him know we will get through this and everything is going to be ok, to not be scared. I am just absolutely petrified that we won’t be able to stop this. It is a living nightmare; I never imagined anything like this happening to us. Meningitis, cancer and sepsis have all been my worst fears, but this? This is far worse than anything that I could ever have imagined. They can't definitively tell me what it is, nor how to stop it. How did I not know about this? Why is this happening to my beautiful boy? What did we do wrong to deserve this? Am I somehow being punished through Sam, surely not?

I am grateful to Sam's dad for being so calm and rationale. He is really being up to speed with all the medications and treatments. My head is too blown for that currently. We already leant into a routine, me being the late night person and him being the early morning one. That way Sam isn't alone too long.

13:30 The consultant this morning said he is on multiple drugs for his seizures and they are going to try and reduce them to see if they can get him on just one. I am feeling a bit stronger now as I have seen the chaplain. She is a lovely lady and has been a tower of strength. She has given me the strength to be more positive and calm. I need to stop looking at the monitors as they panic me, I just need to focus on looking at Sam. I am trying to micro manage something I have no knowledge of, it just so difficult not to. Sam is my utter world and I want to make sure that he is receiving the best care in the world. I am frightened someone may not notice something, so feel that I need to be there to step in, be his early alarm.

I have read to him lots so far today which I enjoyed.

We held a family prayer on Whatsapp outside the main entrance of QMC, with my mum, sister, Sam's dad and me present and the rest of the family on the call including my brother from Denver and my cousin Sharon and dad in Blackpool. That has helped me a lot.

15:00 We have come back from a meeting with the neurologist. In plain English they see someone like Sam every three to five years. It may be autoimmune linked and he may have another lumbar puncture if they haven’t got enough fluids left. They also may try him on the ketogenic diet. He isn’t stable enough for an MRI scan yet they need to reduce his anti-seizure meds but every time they do his seizures increase. I wish what ever was causing this would go and DO ONE. I am trying to keep my faith and hope and the chaplain has really help me.

18:00 One of Jim’s bosses friends came to see us. He is a neurosurgeon as QMC and he popped in to see how we are coping and if we needed anything. We felt very touched he took time out to see us. We have met so many amazing people and people who genuinely care.

Our beautiful friends are being a tower of support, Amanda, Becky, Emma, Sarah, and Max. They are keeping in constant contact with me and informing the people that need to know, including parents of Sam’s school friends. I don’t know where I would be without them. I know how difficult this is for them as well. I haven’t told many people. I can’t cope with it I need my focus to be on Sam and nothing else.

Amanda asked me to pass a message onto Sam. I need to tell him that he is very much missed by all his friends and teachers at school. One of his friends told his mummy that Sam should have been sat next to him doing his disco dough, and he missed him not being there. Amanda’s daughter asked for her to drop off Sam’s card, magazine and chocolate fingers. How beautiful that the children are asking after him, and missing him. It shows how loved Sam is <3

Amanda would also like to send some recordings over for Sam, I know he would love that, it is so thoughtful. Sam’s teachers will also send through a video of story time. That is super kind. I think this will all really help Sam and let him know how loved he is. Amanda has also been researching medical sites for NORES and FIRES and ketogenic diet. I haven’t yet done this as I am too frightened too and my mind is too blown with it all. I am trying to take in how we are in this position and trying to keep faith and hope.

22:50 Sat with Sam currently. Not sure there has been much improvement today really. Touching Sam seems to trigger cluster seizures so we have to careful when we touch him. Seriously....now I am even frightened to touch my beautiful boy? The team are trying to reduce his anti-seizure meds overnight so tonight is significant. There is a new team on so I am trying to engage with them and make sure I have every confidence in them before I go to bed. I need to see there their focus is on Sam and nothing else. He had such an amazing nursing team today, so I feel we are very blessed with the team looking after him. I find nights the worst time, as I hate leaving him, so having confidence in the nursing team is very important to me. However, our overnight room is literally 30 seconds away so we are very lucky to be so near. When I go to bed I dress in leggings and a t-shirt so I can simply jump up out of bed and run to Sam immediately if I am needed. I am trying to remain positive.

I am telling Sam how loved he is and that baby Jesus is looking after him, and giving him strength to heal. I have also told Sam that the nurses are his extra mummies helping him when I can’t. Those words help me just as much as Sam, and give me strength to leave him at night in their care. Sam is fighting so hard so I am trying to be a lot more positive; I only want positivity and love in the room with him.

Our Day 4 diary update will be out tomorrow. Until then I will leave you with this beautiful thought...