Getting it right

Samuel and I spent the day today with our friends at Julia’s House. I’ve come home feeling knackered, which is probably because I did a lot of nattering (I am a chatterbox to be honest) and having to think even more about Samuel’s epilepsy and trying to explain to the carers and nurses about how we medicate Sam’s seizures.

I’ve talked before in my post Early days about the difficulties in explaining just when is the appropriate time to medicate Samuel with Midazolam (his emergency medicine) and when you just give him a good cuddle and ride it out. It isn’t a perfect science and I’m sure I get it wrong sometimes but it can be so difficult, especially as he really does live up to being a tricky customer!

Samuel started off today really snoozy but then as the day went on he became more unsettled. I was hoping that it might be his teeth giving him agro so I gave him some paracetamol as his cheeks were really pink but that didn’t make much of a difference. He progressed to an afternoon of on and off clustering. If I hadn’t have been there he would have had Midazolam, we all knew that.

But the problem is the grey area within his protocol.¬† There are some seizures you count, you look at your watch and mentally log, others you just give him a good old cuddle. But should we be ignoring those seizures? Are we pushing the boundaries too much? I think everyone understands that by nature Samuel is a twitchy boy and those twitches (which are in actual fact seizure activity) are inevitable due to the set-up of his brain, but it’s the other things he does, the seizures. How can I expect people to ignore some but count others? We just don’t want him medicated every day which realistically could happen. Samuel has seizures EVERY day.

I think the nurses, well one in particular, could see the difficulty I have and advised me to talk to Sam’s doctors about it to clarify his protocol. The ridiculous thing is I do agree with the written protocol, in fact I co-wrote it with the doctor over the phone BUT it’s about how it works in practice. She said that she felt that it is such a huge responsibility on my shoulders to make sure that they get it right when I leave him in their care.

You see I love Julia’s House, I really do. The whole place, the people, I just love it there. I cannot explain how amazing the nurses and carers are, how kind, lovely and understanding they are. They make me feel normal. Nothing I tell them phases them. I doubt there is much I can tell them that would surprise them or they hadn’t heard before. They must be the best childminders in the world!!! And I can’t begin to tell you just how lovely they are with Samuel. Right from day one, the way they talk to him, stroke him, cuddle him. As his mother who loves him with every grain of my being, watching these people hold him so gently, look after him with so much care. It just makes my heart swell.

If it wasn’t for this situation with his epilepsy and emergency medication I would have left him there on his own after the first day. I trust them, I really do.

We did end up giving him Midazolam in the end. He did need it to break the cycle he’d got himself into. But although it’s always disappointing when he has to have it, I really did feel we achieved something today. They saw what he does. They witnessed what his epilepsy can be like and they saw how much I want him to be awake and alert as much as possible. They saw the difficult situation I’m in, the hard decisions I often have to make about medicating him and I really felt that they were there behind me, supporting me.

Why is no-one cuddling me?

The nurse was keen to make me see that it isn’t a test of me. It’s not about right or wrong or whether we are looking after Samuel correctly. It’s about us all being in the same team and understanding how we can care for Samuel together.

We will get it sorted. We must. I’ve already put forward some dates to have community sits which is where carers come over to the house to look after Samuel. I will be home, just for the time being, but do have every confidence in them, Samuel and me, that we will get there.

There is a sign up in Julia’s House that says ‘Julia’s House is a happy place’ but it is more than that. Julia’s House is a happy, loving, caring, supportive, cuddly, fun, positive, sunny, friendly place. The sun ALWAYS shines at Julia’s House.

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6 thoughts on “Getting it right

  1. Julia’s house and it’s staff sound wonderful. It really sounds like dealing with Samuel’s epilepsy is about instinct, judgement and intuition and that is so difficult to explain to someone. As you say it’s probably good that they did witness Samuel’s cluster seizures and how you deal with them. It sounds really promising for the future and it wil clearly take time for you to trust them fully with Samuels care when you are not there. I am glad you had the opportunity to share the stress of dealing with this on a daily basis must place on you. I hope that in the long run you can leave Samuel in their care so you can have some respite time. My son is 8 and I don’t think you can underestimate the value of good quality , timely respite to recharge the batteries. Xx

    • Thanks Caroline. You are right. I know we will get there, it will just take a bit of time. I just think I under estimated it all really. I live and breath Samuel and his condition every day. It’s my job, my world. But explaining it to someone else isn’t that easy. But they want it to work as much as I do, so I’m sure it will. x

    • You are right, it is about instinct and we’ve only had 5 sessions with them so it is still very much early days. He is 16 months now and we still feel that we are learning (and sometimes making it up as we go along!). But they are wonderful and so want to help. I love that they are part of our lives now. And I love how much the obviously adore Samuel. Although it would be hard not to! xxxx

  2. Julia’s House sounds wonderful and the staff just perfect….. I am sure that when you feel more comfortable leaving your Samuel, you will make the most of the opportunity and take a break, even if it is for a half hour walk around the block! :)

    • I know, I do agree. And to be honest I think the carers and nurses are keen for me to be able to have a break, so I think they will be pushing me out of the door for a break before too long. Thanks for stopping by and commenting. x

  3. It’s still early days Zoe but I am sure you will get there. It is great that they could see what happens and you could talk them through why you don’t medicate and at what point you decide you need to. xxx

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