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.
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.
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.
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