Keep calm and ask Mum

As you know we are in hospital for Samuel to start the Ketogenic Diet. I wrote in a previous blog post, Tricky Customer, that I was mainly nervous about the doctors and nurses and their approach to Samuel’s epilepsy.

I’m all too aware that Samuel has unusual epilepsy and that you don’t medicate all his seizure activity (because that would mean you’d be sedating him every single day when he does usually come out of the seizure by himself). But nurses and doctors are trained to resolve seizure activity as soon as possible.

To add to it all, Samuel didn’t have a great start to the week. We came into hospital on Monday and that evening we gave him Midazolam. But we, as in his Dad and I, decided to give it to him. He also had another dose on Wednesday which was given under my instruction.

And that’s been the theme for this week. Everyone has been told to follow our lead and it is up to us to decide when to give the emergency medication. In fact we’ve been pretty much left to it. I’m doing everything for Samuel as I normally do, doing all his medicines and feed plus managing his seizures. They’ve not even taken his medicines from us, they are here in the room with us for me to use when we need to.

The nurses are lovely as usual and very interested in Samuel and I’ve told them all about him. They notice his twitches and jerks and I explain that they are normal for Samuel and they tell him that he’s a brave boy and stroke his hair.

Being honest I think some of the nurses are relieved they don’t have to make any judgement calls and it can all be left up to Mum. I don’t mind. I don’t mind at all. It’s my job after all and although I might not be trained or be able to do lots of complicated nursing and medical stuff, I’m the best nurse Samuel will ever have.

Tricky customer

Samuel is going into hospital on Monday as an inpatient to start the ketogenic diet. I like our hospital, well as much as anyone likes a hospital. I’m use to it. We got there a lot for appointments or to pick up something – like tubes or new feed. To me it’s just a building where they treat poorly people. The doctors and nurses I’ve met there are really nice. The nurses always seem to fall in love with Samuel quite quickly and are really kind and gentle with him. Also, we are very lucky that Samuel’s pediatrician is wonderful (I’m a bit of a fan of his).

But I must admit I am nervous about going in next week. Samuel isn’t having any invasive procedures, he’s not going under the knife or being given general anesthetic. But I still am nervous.

I’m nervous because of his seizures. As the pediatrician put it, Samuel has off the scale epilepsy. Doctors and nurses are trained, are programmed, to treat seizure activity when it occurs. But you don’t do that with Samuel. He has seizures every day, so you would be sedating him every day. As I’ve said before, some seizures you just let happen, you cuddle Samuel and hold on for the bumpy ride until he’s settled again. Sometimes he twitches a lot. That is seizure activity. It unnerves doctors.

Last year we had to take Samuel into hospital because of his seizures (Better late than never). The doctor was a really nice guy. But I almost had to wrestle the emergency seizure medicine off him. We were having a rest in the parents room when the nurse called us to say that they might have to medicate Sam. As we approached the cot the doctor was prepping Samuel’s canula to give him some intravenous medicine. Samuel was twitching. Just twitching. The doctor said that he had seen what Samuel had done the night before (the previous evening was a very rough ride for us all) and said he anticipated that Samuel was about to do the same. I said no. That’s not how we treat his epilepsy. We have to wait and let it become something before we medicate, we don’t medicate just in case (that would mean he’d be medicated every day). I asked the doctor for five minutes more, just give him five minutes. And he did. I got Sam out of his cot and we had a cuddle. The twitches, the ‘seizure activity’ stopped. He settled. Oh yeah, he then went off to sleep.

When we see new doctors, doctors that haven’t met Samuel before, there are always the same questions. Now I know doctors have to ask these questions, it would probably be wrong if they didn’t. But I just find it difficult when the doctors first meet Samuel and are still looking at him through ‘textbook epilepsy’ eyes (I do of course appreciate that there isn’t textbook epilepsy):

• How many seizures does he have in a day?
• You realise that this is seizure activity? (Pointing at the twitchy, jerky movements that I haven’t appeared to acknowledge. But I always know every movement my boy does, I just don’t make a song and dance about it every time)
• What do his other seizures look like?
• How long do they normally go on for?
• Is this normal for Samuel? And this is the question I do like because I respond by very enthusiastically saying ‘YES! This is very normal for Samuel.’

And that’s it, what Samuel does is normal for Samuel. It isn’t normal outside of our bubble, but in his bubble it is what he does. He has an abnormal brain, that is why every EEG he has had has always come back the same. As we always say it ‘abnormal, but normal for Samuel’.

The other thing that although doesn’t annoy me, I do find strange is the enthusiastic wafting around of oxygen. Samuel doesn’t have oxygen at home. We have never had oxygen at home. When we came home from NICU we came home with a barrel full of medicines but no oxygen. It was always felt by the doctors in NICU that oxygen didn’t really help. He’d either come out of the seizure by himself or once we’ve given him emergency medicine. This really surprises people but his body seems to cope. with one type of his seizures, when he first starts, his lips very briefly go blue, but then they return to normal. I do thank our lucky stars every day (yes readers, we are extremely lucky) that Samuel doesn’t need help breathing and know that in the future it might all change. But for now it’s a nice feeling I can tell you, knowing your child can breathe independently and not require help.

So when the nurses say ‘shall we give him some oxygen?’ I always respond with ‘well you are very welcome to but we don’t have it at home’ And they do give him a big old waft of oxygen.

Samuel’s pediatrician, have I mentioned I’m a fan? will be around in the background and he is very in tune with our boy, so I do keep reminding myself of that which makes me feel more relaxed. I know he will do everything he can to ensure that the doctors on shift understand as much as anyone can about the quirks of Samuel and what to do and when. And hopefully the doctors and nurses will quickly learn the mantra of: ‘KEEP CALM AND ASK MUM’

I’m not sure the point of this post. But I think it just confirms that for nurses and doctors, Samuel is most definitely a tricky customer. I probably should get him a t-shirt made with that on!

Story of survival

When Samuel was in NICU we would regularly have a nurse called K. I really liked her, she had a great sense of humour (which really helped given the situation) and she was very kind and seemed to be very fond of Sam.

I think we’d been in NICU two or three weeks when the head consultant Dr MK asked us to have a chat with him. He told us that they were becoming increasingly concerned about Samuel’s condition and the fact they were finding his seizures so hard to control. At that point he was on a Midazolam infusion and totally out of it. Dr MK told us that we needed to prepare ourselves for the possibility that Samuel would not come home. Ever. We would either lose him to the seizures or that they would be so impossible to treat he would have to be permanently sedated and remain in hospital indefinitely. As you can imagine our already shaky world crumbled.

My husband got angry. Not at the doctor but at the unfairness of it all. At the women, pregnant women he saw outside the maternity unit in their dressing gowns smoking. We were both very emotional. We went back out to Samuel’s cot and K sat with us for quite a while before telling us her story.

She hesitated at first, I think she was unsure whether it was the right thing to do. But I’m so glad she did. She told us of her baby boy J, who had been born 24 years previously. He had a rare brain disorder, I can’t remember if she told me what it was or whether he had a diagnosis,  but she said it was bad. His brain was in a worse situation than Sam’s. He also had a severe cleft palate and in effect was missing his top lip. She was allowed to take him home, but everyone knew it was for ‘family time’ before he passed away. It was almost certain that her boy wouldn’t make it. If I remember correctly, he lived for around 8 months.

As she told me this story I kept staring at her thinking, but how are you here, walking, talking, how have you made it through? But the point is, she did. Her experience led her into nursing, she was a hairdresser when she had J, but after what she went through she wanted to help other babies, so she became a neonatal nurse.

K told us that things we said in the meeting with the doctor, the things that my husband had got angry about, she had said the same things herself all those years ago. She told me that I must not feel guilty, however hard it is, I must not feel guilty. She said that I must always remember that I brought Samuel into this world and whatever happens I will give him a life full of love.

Throughout our time in NICU when things got really bad and I had really dark thoughts I kept reminding myself that K’s been through this and she survived. She somehow made it through and she had worse odds than we did.

The fact that she wanted to help other poorly babies made me admire her even more. I don’t think I’ve got it in me to do that. Being a NICU nurse you see just how damn cruel nature can be. Our friend Auntie C, also a NICU nurse, has told me many stories of children she’s nursed and the different conditions. I don’t think I could deal with that cruelty every day.

When we finally got Samuel home, my husband and I made a deal. That we would truly treasure Samuel. We would enjoy every moment and celebrate the boy he is and try not to mourn the boy he will never be. We made that pact in memory of J.

Although he has surprised the doctors that he’s still here and seems to be doing ok, we know that we will outlive Samuel. He wont make old bones. But we’ve got this far and he is a fighter.

I know there will be parents reading this that have lost their babies. Samuel is 16 months and maybe their little ones didn’t make it that far. But I promise each and every one of you that we hold and squeeze him so tightly every day and know how lucky we are to still have him here with us.

Whatever happens in the future, somehow we will survive. We have to, as Samuel will always be here in our hearts.

Oh reflux!

I’ve been meaning to tell you that the doctors think that Samuel might (they don’t know for definite) have reflux.

When Samuel was in hospital in November the nurses noticed that he was arching his back (which he does sometimes when he’s a bit twitchy or sometimes when he’s having a seizure) and said that could be due to reflux.

Then a few weeks later when we had an appointment with the paeditrician and neurologist (who I adore and think are amazing) I mentioned the suggestion of reflux and both doctors said that Samuel probably has it as due to his epilepsy and disabilities he is a prime candidate for it (I can just see all you parents there nodding because you already know that). Samuel is over a year old and the doctors have never said that before. When we’ve been asked routinely by other professionals if he had reflux we’ve always said no as he’s never really dramatically vomited. When I put this to the doctors they said that he is probably swallowing the vomit back down (I have smelt his formula on his breath now and again). Right. Couldn’t we have been told this before? We are quite new to all this (and not just disabilities, we are first-time parents after all).

Anyway, he has medicine for it. We’ve now got to add infant Gaviscon to some of his feeds and give him Lansoprazole an hour before his first day feed. So the poor boy has even more stuff swishing about inside him.

I can’t tell you whether the medicine has helped him as it is impossible to tell, I mean we don’t exactly know whether he does actually have reflux. But at least he has it now if he does need it. He’s just had a wait a year for it.

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.