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.

Early days

Well we’ve had four sessions now at Julia’s House and I do really feel that bringing them into our lives is certainly going to be really positive for us.

For three of those days Samuel slept for most of the day (which he is doing now as I write) so the carers didn’t really have a chance to play with him. One of the sessions he was much more awake, but very unsettled with some bigish seizures thrown in, so we didn’t think he was in the right mood for play time.

But I do think they are getting to know him. The only problem is (and I need to keep reminding myself that it is still early days) that to be able to leave him with them, they need to see and understand which of his seizures we medicate and which we just cuddle him through.

There is a protocol, which is a good protocol, but when it comes down to it, it isn’t helpful for a child like Sam who has a lot of seizures. So the protocol says to medicate when he’s been having a seizure for 10 minutes. The problem is, Samuel has a lot of seizures. When he’s twitching, that is actually a seizure. So there are some things he does that we don’t medicate, that we just have to overlook.

There are some seizures, even though he’d been doing it for several minutes, where I would just scoop him up onto the sofa with me and we’d cuddle for however long he needed. It wasn’t a seizure that particularly would worry me and in fact in our language at home we’d probably say that he was unsettled and having a bit of a fuss.

Apart from leaving him with Auntie C a few times for no longer than a couple of hours, I’ve never left Samuel since he came home from hospital. It has always been his dad or I with him (mainly me). I’ve never had to explain it before in quite such detail. This is different to when I’m discussing Sam’s condition and seizures to his doctors. This is so I can leave him confident that his new carers understand when to get the Midazolam out and when just to give him a good squeeze.

Because Julia’s House are booked up with training over the next couple of weeks, we’ve not got a session again until next month. But I’ve got a plan. With the use of our little video camera, I’m going to film Samuel to show what we do medicate and what we just cuddle through. I think this might help me show the nurses and carers because I have found it really quite difficult to explain and worry that I’ll just never be able to articulate it correctly. But I keep reminding myself, it’s still early days.

They are more than happy for me to stay with Samuel when he has his sessions and I can go off into another room and have a read or a coffee if I want some space. But I like being around the carers and seeing the other children play (I could write a whole post about how adorable the other children are) and watching people chat to Samuel and admire his gorgeousness.

They make me feel normal.

It is so nice to be around people who will chat and cuddle Samuel and aren’t put off by him not obviously reacting to them. They stroke his hand and chat to him about what the weather is like, what the other children are doing, they tell him that they like his shoes and his new jumper. They hold him tightly when he has a seizure and tell him that it will be alright, he will be ok. Very quickly they have become Samuel’s friends.

I know we’ll get there in time. After all, it’s still early days.

 

Related posts:

• Sam’s condition – what is ARX?
• Auntie C
• New chapter
• If you meet Samuel

New chapter

You know the advert where the family have booked a package, all-inclusive foreign holiday and throughout their journey right up to and including arriving at the hotel they are treated like VIPs?

Well I had that feeling today. That lovely fuzzy feeling where everyone is so very pleased you are there and they’ve been really looking forward to meet you.

But we weren’t on holiday, we were at Julia’s House. It was our very first session there this morning and it was wonderful. When we came in all the carers and nurses appeared and said hello and were keen to meet Samuel (and I). I kept hearing, ‘Oh is this the lovely Samuel, can I give him a cuddle?’. The whole morning session was spent with him being cuddled by different people who were all just so lovely.

The place does not at all feel like a hospice. It is very warm and homely and the bedrooms are really cute and cosy. We were given a quick tour and then I was made a lovely cup of tea and sat down with a lady called Pam who will be one of Sam’s carers and we just had a lovely chat about Samuel and our world. I think most if not all of what I said she had heard before which I found very comforting. We also met Ashley who will be another one of Sam’s carers, he was very sweet with him and didn’t seem to mind when Sam farted and burped on him which I thought was a good sign!

There were a couple of other children there (who were very sweet) whose parents weren’t there and I was interested to watch the nurses and carers play and interact with them. They were really kind and made a huge effort to make things fun and interesting.

Even very limited children like Samuel get involved with arts, crafts, baking (!), gardening and all sorts. I’ve been warned that my fridge will soon be covered in pictures made by Samuel. There is a fantastic play lady too who gets really involved and puts together an individual play plan for the child, I just hope that Sam doesn’t sleep through his play dates with her!

It was so nice to see them enjoy Samuel and take pleasure in cuddles with him (his cuddles are fantastic I must say). The lead nurse even said about how cuddles were part of his emergency care plan which she’s not come across before, but thought was fantastic.

I was only there for about three and a half hours but I could hear a little voice in my head say ‘Yes I trust these people, I really do.’

My only reason why I feel that it may take a few sessions before I’m happy to leave him there on his own is because I want to feel that they do completely understand his seizures (as much as anyone can understand his seizures!) and I’m confident that they know when to medicate and when just to cuddle him.

But I can’t explain the feeling I had in my chest as we left.

For quite a while I’ve very much wanted to be part of the Julia’s House community, to meet other parents like us, to be part of a world where we are normal. A world where there isn’t anything we say, or anything that Samuel does that is particularly surprising or unusual. Just normal. Our normal.

But above all, the most important, significant feeling I have is that they will really help us get the best out of Samuel and will definitely be a big part of our world.

This is the start of an exciting new chapter in the adventures of Samuel Luke.