Day Four. Difficult lecture. Reflection.

This week is induction week but the real lectures have begun. I knew this one was coming and very aware that its a barrier to my engagement with the course. But before now I had decided to face it head on. 

Resuscitation.

Those who know our story or who have seen my Ted Talk know that I have had to begin resuscitation on my son twice. One due to a seizure and choking, and one due to cardiac. I am not going into details but instinct took over and emotions came after. And they did hit, like a brick wall. But my son (with a resilience most adults couldn't sustain) bounced back with life, so I followed his lead. But that stomach sick feeling I had for days after at what could have been does come back to bite me on the bum. I had assumed it was due to muscle memory when partaking in first aid courses, but due to covid, this lecture is online. Boom. That sickly feeling returned. 

Usually writing helps my brain process it, hence this blog. 

As the lecture proceeded, I found myself drifting and looking at the numerous photos I have of my son on the wall behind my computer. Many of them wouldn't exist if he hadn't fought to stay on earth. He is incredible.

But now I need to compartmentalise what happened so it doesn't bite me on the bum in my learning and in my career. Whilst in the lecture I spoke to my cohort peers and gained support and lovely messages. I need to reflect and in doing that I don't think there is anything I could have done different in preparation for this lecture. I am actively recognising my anxiety around it and will seek support from the channels in the university if and where needed.

But my message as always is everyone educate yourself on CPR as instinct takes over. My son wouldn't be here if I hadn't. 

Offically a learning disability nursing student! (in strange times- some advice for others)

So, my first post as a student learning disability nurse I thought would be around how I feel about it and the changes from the life I have come from into this world however I feel it important to offer some advice to others in similar situations- starting a course during a pandemic.

For me the concept of learning online wasn't a strange one. The whole of my last masters degree was by virtual campus using mainly webex. My cohort were faces on screens, personalities in my computer (and friends for life!)  When I applied for this masters degree I had hoped I would then be in face to face groups without the barrier of distance and screens.

The pandemic had other ideas.

Here we sit doing our induction online. The reality of this hit a little a week ago when i took my niece to university. (See picture for the uni survival kit 2020 style I put together for her)  She had a little wobble and I couldn't actively encourage her to be getting involved in big groups of people. She has since adapted and is loving her course and new life. I feel for 18 (or thereabouts) year olds navigating their new university life, many away from home, in the current climate. At an age where image and peer acceptance is so so important, they have the barriers. My own induction has been mainly on teams and this offers some interaction, but some on different nursing courses, I know has been recorded films to watch. They're deflated after so much hype.

Of course it is no ones fault. We are student nurses. We want the pandemic to be controlled and for least people to get sick but its important for those going through this transition to acknowledge and do all they can. So, I just wanted to offer the benefit of my experience as a online student previously and also because I worked solely online prior to becoming a student again, with a few tips.

• Make connections. Use social media. Make study groups. Those are the absolute key to keeping you going. Where safe arrange to meet up, but have that daily contact with your groups. Not just for study, but for banter, for encouragement or whatever is important to you,. That is the support network that will get you through, even when things change to face to face again. That's the group that will know when the next assignment is due in or where best to get your nails done (nails, what are they?) 
• Make your study area your own. If its photos all around of people who inspire you, so be it. If its a corporate wall planner so be it. If its twinkly lights, so be it. You are going to spend a lot of time there, it needs to feel happy and motivating. My own study area (organised chaos!) has many pictures of my son and family, an Annie doll, pretty stationary and post it notes EVERYWHERE :) 
• Be comfortable. A dining chair isn't going to do your back any good long term. If you can invest in a decent chair or at least back support. You need that back to stay well! 
• Walk away from the screen as much as possible. The emphasis is on "walk away."  Stretch the legs, leave the room, get fresh air if you can. I know taking your phone with you is inevitable and you may end up scrolling social media but that break form the intensity of your learning screen will help. (Try to have non phone time too!)
• Drink plenty of water. Its good for you and if nothing else it will make you leave your desk to go for a wee! 
• Most importantly be kind to yourself. Recognise if online learning is getting tough. Talk to your peers (they really will understand) Talk to you study support networks. You can do this but as they say, its ok not to be ok too.
• Last but not least, be proud. you're starting a course in the midst of a pandemic . That's no mean feat. Many deferred for a year (that's ok too, we are all different) but you have been on a journey to get this far and can keep going. You're amazing. 

I really hope this helps someone. L. x

Our Ketogenic miracle

 Just sharing a case study that was delivered to neurologists and other doctors four years ago about our keto journey -

The ketogenic miracle

Its two years this month since M started on the ketogenic diet. What a life changing decision that was. Rewind two years... My boy had exhausted trying most AEDs Options were scarce. Surgery not an option due to his bodies inability to cope with anaesthetics.

Seizures were varied and severe. Ranging from nocturnal tonic clonics to gelastics to partials... daily. Regular rescue medicine intervention. Cardiac arrest even due to said midazalom. I knew if this carried on, I would lose my boy. My world. I was already losing him like a drip feed of poison.  Seizures took a little more of him each time. In turn a piece of my heart went with him. Helpless I could only watch his writhing body cope with seizure after seizure. Never knowing if this was the last. Every second feeling like an hour. Measuring the midazalom in the hope that very activity would scare away the seizure monster. Paramedics became a regular visitor in our house. First name terms all round. Gentle banter even, yet inside my heart crying out for me to take the place of my sons own struggling body. It even gets to the point when the unthinkable becomes thinkable. A point where you know that if the seizure monster were to take him away from me, it would be a happy release for his body. No parent should have to deal with that thought. No parent should have to resuscitate their childs body as life drains from it. I did, twice.

I had heard of the ketogenic diet. I bravely asked our neuro about it and he welcomed my suggestion with an enthusiastic response. We are lucky enough to be under a hospital where there is a whole (fantastic) team. The ball started rolling. Appointments were made. Training pursued. It’s not been easy. Daily bloods from a child whom you can’t explain things to, yet that soon became a routine. M is part oral and part gastrostomy fed. Learning and adapting to his new diet. Day four we reached our ketone aim... it’s a scary concept putting your child into ketosis. My two nieces are type one diabetic s so I was very much aware of the implications. It also went against everything I had learnt in their care. Perseverance, determination and extreme vigilance. Every ounce of food measured. Every drop of keto mix (as i cal it) accounted for. Those beautiful little ketones set about their task. 

So two years on... here we are. I have a different child. Seizures are drastically reduced. We only get a break through when he is poorly or stressed. Admittedly I see some clusters of smaller partials or absences when he is tired. But, he is awake. He is progressing massively at school, using an ipad to communicate. Enjoying the world around him. M being awake has brought its own challenges. Anxiety due to his other diagnoses is the biggest resulting in some challenging behaviour. This is the lesser of the two evils though and management strategies are in place. I have my boy back and I don’t fear each night that it could be his last. I am confident he is going to keep developing into a confident young man and make the best within his limitations. This is all thanks to the ketogeic diet, the ketogenic miracle.

I urge you. Educate yourselves about it. Embrace it. You literally will save more lives. Our ketogenic team have and do. I will always be grateful to every single one for allowing us to go on the diet and for their education, support and guidance every step of the way. Because of that, my son has a future.