Day 30 of Sam's FIRES Diary

Tuesday 20 April 2021

Creating Awareness of Febrile Infection Related Epilepsy Syndrome

 

Location: Nottingham Queens Medical Centre, Paediatric Critical Care Unit

 

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

 

7am I went to bed early last night, but slept fitfully. I’m not in the best of places, and this week has been the worse yet. I am clinging on to hope with my fingers nails, all whilst making sure that everyone else is over flowing with hope. Contradictory hey?

 

As soon as I woke up my tummy was doing summersaults. Has the isoflurane continued to work? Has his brain suppression held? So, the great news I have woken up to is that Sam had full brain suppression through the night, and they even managed to take him off his thiopental. He will remain on the isoflurane for the next 36 hours. He had no poos last night, but he had plenty yesterday. Sam is also back on the full ketogenic diet, which is great and he has six sachets of Movicol laxative to support him each day.

 

I feel this treatment is the last chance to stop his seizures. We seem to have tried everything. I feel sick with nerves as I am just so worried that there is a chance this may not work. And what then, what is left to try? I am sure people were probably thinking why I wasn’t more happy that it initially worked. But brain is protecting me. I have seen all the other 17 treatments initially work and then his brain starts seizing again. I just need to manage my expectations for my own sanity, or I know I wouldn’t cope with inevitable downwards spiral if Sam starts to get break through seizures.

 

12pm A few days ago we were assigned a palliative care nurse who is specialised in helping parents with children who have encountered life changing conditions. She also helps our communication with his medical team as well and helps us process everything that is going on, or I suppose the trauma that we are going through. I have been able to share with her that I get frustrated with people telling me how poorly Sam is as it makes me feel they are giving up on him. So she will feed this back to his medical team. For the benefit of the reader, this lady is one of the most incredible people that I have met in my life. I cannot over emphasise just how much support gave me at the worst time in my entire life, and she still continues to give me.

 

5pm We had a good meeting with Sam’s medical team, which included his critical care and neurology doctors. As Sam has been in critical care for four weeks, we have been assigned a lead consultant. This will help with continuity of care etc. We get on really well with our lead, and we trust him, so it’s fantastic news. They were very honest in the meeting. Sam is critically ill, and the best-case scenario is him surviving but with significant impairment. I am praying we get the best outcome as we will absolutely make sure he still enjoys his life. In my mind I am already planning ahead and buying a bungalow so we can bring him home. In the words of his consultants, we have a very sick little boy who has had a catastrophic condition. However, whilst Sam is critically ill, but they reassured me they are not giving up hope yet. They are 100% committed to finding a cure for him. Whether Isoflurane will stop his seizures fully, remains to be seen. Basically it’s 50/50. All we can do is watch and see.  

 

8pm I am feeling sick with nerves. I have seen a few breakthrough seizures coming through and I am crumbling inside and want to cry. I know I keep saying it, but this is just torture. They have to be really careful with giving isoflurane, it’s acute meds. Well in fairness all of Sam’s meds are acute meds, and on top of that he is on acutely high levels of everything. But if they don’t get this dosage level right it could cause all sorts of horrific complications. As I keep saying, the job that critical care teams do is just phenomenal.

 

10pm I have been doing a lot of research. As part of this a couple of days ago I reached out to a wonderful lady that I remember from work many years ago. She has a beautiful little boy with a very rare life limiting chromosome deletion and has largely drug resistant seizures, and prior to Sam getting ill I was following her social media page that she had created to share her son’s journey. I just wanted some insights to what had worked for her little boy and needed to talk to someone who would understand what we were going through. She sent me a wonderful email which gave me much hope. It allowed me to share her son’s story with Sam’s consultants, to show the importance of not giving up, but more importantly it gave me confidence to discuss Sam’s treatment pathway and ask more questions. One thing I am frightened of doing is upsetting his medical team by asking too many questions. I don’t want to come across that I am doubting their skills, or their efforts, or their care and sometimes this can make me reticent to speak my mind. But this wonderful lady really helped me to do just that.

 

I have been helping with Sam’s cares throughout the day such as washing him, changing his nappy, moisturising him and putting Vaseline on his lips. As ever I have also been reading to him as much as I can. We are now on to the Enid Blyton book the Adventures of the Wishing Chair. I know Sam would utterly love this book.

 

It has been such a tough day trying to keep positive and every single day feels like another knife is being twisted in my heart when we don’t get the improvements we need. But I need to be strong, and sometimes this seems impossible. I have been a bit of a mess today.

 

I leave Sam’s dad to do the late shift again as I feel emotionally and physically exhausted and incredibly down. I need to get my energy up so I am useful to Sam. Once I feel Sam is stable, I say his good night prayers with him, sing him his good night song, tell him how loved he is, and how proud we are of him. I also tell him that we will get through this, and not to worry he just needs to keep fighting.

 

As like every night, I will myself to sleep by praying and hoping for Sam to have a brighter day tomorrow.

 

Day 31 diary update will be out tomorrow. Until then I will leave you with these beautiful words.

 

~~~

There is a superhero in all of us,

We just need the courage to put on the cape.

Credit: Superman

~~~