An O thing

20130112-125249.jpgSo, we spent the last week in hospital. ‘What?‘ You say. ‘I didn’t know about that‘. Well reader I would have written a little post if I could have done (mainly to relieve my boredom) but the signal was so bad that my phone was rubbish! Anyway, I digress…

At 8pm on Tuesday we had to give Samuel his emergency medicine Midazolam as he was clustering and we couldn’t wait for his evening medicines to kick in (which we had just given him). After having Midazolam, Samuel often has quite an elaborate wind down with lots of fussing and this time it was no different but he then started to cough up A LOT of phlegm.

Once he’d calmed down and was sedated hi20130112-125304.jpgs breathing started to very quickly become quite laboured and exaggerated and he was flaring his nostrils. We checked his SATs and they were quite poor. So we packed him up and took him into hospital.

As soon as he was in hospital he was put on oxygen and hooked up to a saturation monitor and you could see the  instant benefit of the oxygen.

To cut a long story short, they think he might have had a virus which had caused the breathing problems. He started off on 90% oxygen but quite soon we were able to start weaning him off. He was initially given an oxygen mask, then he was put in an oxygen box (which looked like a little greenhouse), then as he was taken out of the box and given nasal prongs.

While in hospital, Samuel’s epilepsy was very bad. Not sure if that was just a coincidence or something to do with the virus (he was also a bit constipated which may have contributed). He had several doses of Midazolam and we had to grit our teeth and hope this wasn’t the start of something else.

It was also frustrating that Samuel’s brilliant paedetrician, who is the one person at the hospital who knows and understands everything about Samuel (as much as that is possible), was on holiday, but the nurses were brilliant and I think the other doctors are starting to get the hang of our little tricky customer.

As hospital stays go, it wasn’t too bad. We could see that as far as the virus was concerned he was getting better. His seizures did calm down and he didn’t have any emergency medicine yesterday (Friday). I also wasn’t alone during our stay. Although Samuel’s Dad had to go to work, two of my lovely Mum-friends from Julia’s House were also in hospital with their children, so we had a chance for a good natter.

We’ve got to see how things go, his breathing is back to normal but he’s still jerky and while I’ve been writing this he’s had a couple of short seizures. It might all be fine or he might end up having some emergency medicine before the end of the day.

Either way it is great to be home.


One question we are asked a lot is about Samuel’s bedtime. ‘Does Samuel sleep well at bedtime?’ This is often asked by other parents, especially when they see Samuel in a very long, deep sleep and I think they worry that he wont sleep for us at bedtime.

But he sleeps very well at bedtime and that is because we cheat. At 10pm each evening Samuel has a medicine called Chloral Hydrate which we call his sleepy drug. It is also thought that Chloral Hydrate has some anticonvulsant properties which of course is an extra bonus.

He’s been on this medicine since he was around two months old as it was felt that he didn’t have a proper sense of night and day. He is only on a small dose of the medicine (about half of what he could have for his weight) but it is very effective. He still does wake in the night if his seizures are very bad, he has a wet or dirty nappy that has disturbed him or he is unwell, but generally our nights are very good.

With the Ketogenic Diet being effective now, I feel a bit more confident about looking at weaning Samuel (and us!) off Chloral Hydrate as he may be better now at night and perhaps he doesn’t actually need it anymore. But I will still keep it in our armoury, just in case!

If you don’t understand about Samuel’s condition this may surprise you but he stays up with us until we go to bed. He is not really aware of the world around him and isn’t disturbed by noise or light so he snoozes with us in the lounge until we decide to go to bed. That way his Dad (who misses him dreadfully when he is at work) gets extra cuddle time in the evening and I suppose is a habit we’ve got into.

Samuel moved in to his own bedroom on his first birthday. Before then he slept in his cot next to our bed on my side of the room and I’d often shuffle down the bed so I could sleep while holding his hand or just lay there staring at him. We both found it extremely difficult to come to the decision to move him out into his own room, but my father bought us a video monitor and that made things much easier (I do have the volume up very high and still lay in bed staring at him during the night!). We’ve so far (will just quickly touch everything in sight that may be wooden) not had any problems with Samuel’s breathing, so feel that he is safe in his own room.

Samuel can snooze anywhere!

Another little achievement we made is taking Samuel off his saturation monitor. Saturation monitors are used to monitor heart rate and oxygen in the blood. This has always been a frustrating piece of equipment as they aren’t designed for children who twitch and jerk a lot and it would often have a poor trace and give an inaccurate reading. There were times that I would notice that it didn’t seem to react when Sam had a seizure but would alarm when he cried afterwards! I told Samuel’s pediatrician that I was going to stop using the monitor and he said that he was very happy for us to do so as we have so far not had any problems with his saturation levels or his breathing. We are keeping the monitor though as we may wish to use it when he is poorly.

I wonder if you are reading this thinking that this all sounds so very alien to you. Quite bizarre in fact. But to us it is normal and works very well. Samuel is like a very little baby, so isn’t distracted by things that other 18 month old children would be. But anyway, what matters is it works and that is all that matters.

This post was inspired by Little Mamma Said and her post Bedtime. Please do pop over and have a read.

This post has been included in the the #definenormal blogging challenge. Pop over to Just Bring The Chocolate to find out more and read other #definenormal posts.