I'm sure people wonder that I don't post more updates about Cameron's good days, this is because each time I do I seem to scud things. And yet again here we are, 1 hour after posting what a good day he was having, I picking up the pieces of a very distressing crisis. Thank goodness I'd just given him his tea time sedation medication. Triggered out of something very small, something that he would never had any problem dealing with, something that led to him climbing the walls with distress........
This is it, this is our norm now. He was having a good day but the last couple of days out playing with his friends and doing normal 12 year old boy things have been too much for him..... And is as also the norm, he falls apart behind closed doors, because he's been trying so hard to keep it all together in front of people. He gives new meaning to the phrase 'never judge a book by its cover' .......
Update on Cameron 3 days post treatment -
He is really enjoying being at the cottage, the sea air is so good for recuperation, he has been playing a little with his friends, short bursts of activity is the key. He remains on regular pain relief for his limbs & throat, he was crying with his throat, dear love him. But has got up to play pool at the golf club a few times which has been great. Thank you Michael Jervis for supervising that activity! We have had tremendous support from the club in helping with fundraising, for which we are very grateful.
Unfortunately we will be heading to the doctors surgery tomorrow as his throat is very bad and he needs a throat swab and blood test to see if there is more strep!!!! Trying not to think that far! He needs his strep titres checked anyhow as 5/6 weeks post positive result for strep is when they are at their highest, which in turn means the antibodies would be at the most vicious in the brain. We are hopeful that putting him through the plasmapheresis sooner rather than later was able to stop/reduce the antibodies in the tracks. However this is still very new treatment over here for Cameron's condition and is classed by neurology as experimental, they haven't experience in using this for Cameron's condition so they aren't exactly sure how he will respond to it.
Taking it one day at a time for now, and today is a good day , he's having fun, he's quite stable today and that's enough for now.
Oh dear, I have one young man who is is terrible pain tonight. The result of his time outside today, I just asked him did he want some pain relief and his answer was "please give me loads mummy"........
This is where it's so difficult to restrict him, it's great to see him out in the air, playing with friends, but you know he going to pay for it later! He couldn't walk just now into bed from the lounge, I had to help him, it's easier here than at home because I have no stairs to negotiate with him, but he's literally wincing in pain with every staggered step he takes. He's so sore he cries with the pain in his ankles, legs & back. It's really hard when he's like this.....💙
First day of freedom from hospital in nearly 2 weeks and what better place to spend it! Cameron has enjoyed the air today, kicking a ball about with his friends for a time (his wound means this is bit sore!) and sitting chilling looking at the sea. Annie has had the dog on the beach and I've just been smiling, being thankful for small blessings. He's flaked out now and I'm about to pour a glass of chilled rose and watch the sunset.