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!

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Hate

Hate is a strong word. I think we should only use the word with caution. Really think about what we are saying before we say it. But what I’m about to say I mean with every fibre of my being. I hate ARX and I hate epilepsy.

I hate watching what the seizures do to my beloved, precious boy every single day. The way his body stiffens and twists, how he cries sometimes before, during and after. How his lips briefly go blue. How it can take him such a long time to unravel and to come out of it. The fact that sometimes we have to medicate some of his seizures and in effect sedate him. I hate that we have to put all these medicines into his little body every day.

I hate the fact that I feel relieved and lucky that he breathes independently and is fortunate not to have oxygen or a tracheotomy.

I hate watching him snooze peacefully, then be ripped out of his lovely sleep by a seizure.

I hate the damage the seizures must do to the good parts of his brain. I hate the fact that he has seizures that we cannot see. Seizures going on his brain that don’t show physically.

I hate that his epilepsy has been described by his doctor as ‘off the scale’ and the moment a doctor or nurse unfamiliar with him see Samuel move or twitch, they want to medicate him.

I hate the fact that these seizures don’t give his brain a chance to develop and allow him to develop and grow intellectually.

But despite all this, everyday I feel so full of love for my boy, my husband and the little bubble we seem to have created in which we feel safe and normal. I love looking at my beautiful boy and stroking his hands, squidging his cheeks and just generally admiring his gorgeousness. I love Samuel so very much and no damn epilepsy will ever dampen that.