The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

An update - Four weeks after VNS Surgery

When Hugh finally woke after his VNS surgery he was irritable. Although non-verbal, he was able to make it pretty clear that he didn't want to be there anymore and was very unhappy whenever the nurses came near him- even if this was just to check his temperature. This is quite a big step for Hugh, he usually doesn't react until they've actually started doing something to hurt him, like cannulate him for example. He's starting to recognise now though that potentially these people in blue are coming to do something to him that he won't like. It's a positive step in terms of development, in recognising people and situations and in understanding cause and effect. It's also a sad reflection of the amount of times he spent in hospital too though.

Once home, Hugh was a lot happier and barely needed any pain relief. I was shocked at the size of the dressings and even more shocked when I saw what was underneath them. I'm squeamish anyway - after his gastrostomy I was given a sharp telling off by the nurse that if I wouldn't look at it then I couldn't clean it and therefore wouldn’t be allowed to take him home- so perhaps I'm not the best judge, but the incisions seemed so much bigger than I'd expected. His chest was bruised and the device was a clearly visible lump under the skin, the incision on his neck made it look like I'd tried to decapitate him. I was probably naive, and as I said I'm particularly squeamish anyway, but he just looked a lot more butchered than I'd expected him too. That said, the chest incision is healing into a really neat line and the lump under the skin (I was probably being ridiculous to have expected it to be invisible, given the size of the device and Hugh's tiny frame) doesn't turn my stomach any more. His neck is still quite red and inflamed looking some 4 weeks on and the dissolvable stitches still haven't dissolved at each end. The redness isn't helped by Hugh's insistence on scratching at it every time I get him dressed or undressed, so I'm covering it in Savlon every day desperately hoping it won't get infected. 

Programming the VNS image credit
Two weeks after surgery, we returned to hospital to have the VNS turned on. I was amazed how this was done. They simply hold a large wand against his chest and programme it through an attached portable tablet. We were warned he might cough when it was switched on, but other than his breathing momentarily sounding a bit like Darth Vader there was no other sign that anything had happened. The device was set to fire 30 seconds of current (set at 0.25) up the vagus nerve to his brain every five minutes. We were also given a strong magnet to swipe over his chest to send a stronger burst of electrical current should a seizure break through. It was all very interesting and exciting. We were booked in to come back again in a fortnight to have the device turned up and told not to expect to see any changes for a good few weeks yet.

The Magnet image credit

That first afternoon and evening I was quite anxious. Hugh was unusually still and quiet. For a child that moves his arms and legs almost constantly this was really strange. That night his heart rate was much higher than normal and his sleep was unsettled and disturbed. This pattern continued for much of the first week though the unsettled nights could well have been caused by adjusting to the first week back at school. His heart rate has since returned to normal. 

Although we are not expected to notice any changes to Hugh's seizures until the device is set at 1.0 (we're currently at 0.5 due to increase to 0.75 next week and up to 1 two weeks after) we've already noticed some significant changes. Initially there was an increase in the frequency of seizures although the duration dropped from his usual 10-20 minutes to between 2-5 minutes. Furthermore, the seizures presented differently with less movement and jerking of his arms and legs.  This is a positive step and leaves me hopeful that in time and with further increases we may manage better overall seizure control.  Here’s hoping anyway.