Last night, at around 1.30am, I awoke with a sense of foreboding. I got up, opened my bedroom door, and was greeted with the distressing noises of J choking and having another 'episode'.
He had blood seeping down his nostrils, and out of his mouth, as he had bitten his tongue. He was choking on blood and mucus.
I managed to clear his mouth, and held his jaw firmly, pushing my own body against his, to try and keep him in a half recovery position. This was tricky as he is such a big lad, his bed is a soft, king size, making it more difficult to turn him, and I was trying to take his pulse, blow on his face to cool him down, wipe the blood and mucus away, and talk to him to reassure him I was there (if he is aware during these episodes I want him to know mummy is there for him).
This was a very scary episode for me, as he was particularly noisy with his breathing, the choking, and how long it took him to recover this time. He tried to get up when he had come round, and wanted to use the loo. He couldn't stand without support, and then in his confusion he attempted to go down the stairs - which would have resulted in him falling down them and ending up with even worse injuries.
This morning, he is unable to talk properly - I know he has speech and language difficulties as it is, but he cannot even say the words he knows, without sounding as if he has cotton wool plugged into his cheeks. He is clearing his throat a lot, and just isn't the usual J. He looks really poorly. I've medicated him, and am just having to keep an extra eye on him.
The frustrating part is, that we have been told to only call the ambulance if an episode continues on for longer than 20 minutes, and even then, when they arrive, they make the decision not to transport him to hospital, as it would be even more distressing for him. I agree with them on that. Waiting around in a noisy, crowded, hot, bright hospital is not conducive in helping to make J better.
We just have to wait until next month for his MRI scan to find out if there is anything going on in his brain that could be causing these episodes.
On a brighter note, J loved his presents. He is finding comfort in pressing the 'Tubby Custard' train to make noises, and as the picture below will show you, he has lined up the 'Tubby toast' set, with cups and saucers, in his preferred pattern of colour.
