Jack became very very agitated Friday afternoon. He wasn't distressed or upset, he just couldn't sit still and the sweat was pouring off him.
He moved that much that he nearly slid out of his comfy chair. Holly and I had a right job trying to slide him back up but we managed it in the end. His arms were banging against the sides of the chair, his legs and feet were banging against each other and he was throwing his head back.
Putting him to bed was a total nightmare and he was half way down the bed and drenched in sweat again before I had even given him his medication! So I stripped him down to a vest and boxer shorts and took the duvet out of the bed. He didn't lie still til just before midnight. I couldn't put his overnight feed on until he was still as he would have got caught up in the feeding tube.
He did sleep for about 7 hours but as soon as he was awake again, off he went. When it came to getting him dressed, I was shocked to see how many bruises he had on his legs and arms. My poor boy. Getting him dressed was like taking my life in my hands. He kneed me in the throat, in the stomach and punched me in the face. By the time I wheeled him through to the living room, I was at my wits end. Holly's boyfriend David gave me a hug and I just broke down.
There wasn't time for that though as I'd to get Holly to horse riding. Poor Jack seemed to hit his arms and legs off of everything and getting him into the car was horrendous. It took 3 of us.
Back home, after putting him on the floor where he seemed to be safer, he got more hyper. He was moving so much that he made his way around the room! So I called the Neurologist in Edinburgh.
It was 4.15pm before the consultant called me back and we were at the children's ward within 15 mins.
It took four of us to pin him down to take bloods and put a cannula into his foot. I was practically pinning down his hip area and thighs, my head tucked in right behind his bum (cos I hate seeing them put needles in) when the consultant came into the room and asked what dose of the new medicine he was on. Thinking that he was talking to the nurse (as I'd given her all that information) I ignored him as Jack was wriggling like a snake underneath me and belting me with his arms.
When he repeated the question, I lifted my head outta Jack's butt area and caught the eye of the nurse who was trying really hard not to laugh at the look on my face. I was thinking WTF? How was he expecting me to think in the position I was in, pinning down a child who was fighting me like a tiger, battering me senseless and who had filled his nappy with a very unpleasant aroma which was filling up my nose and rendering me speechless.
As he looked at me expectantly, I realised that he did, in fact, expect me to answer so I had to get my shit together (pardon the pun) and answer him. I told him the dose but said the box of medicine was in his bag at the back of his wheelchair. He then rummaged in his feed bag with me saying "not that one, the one on the back" as he then rummaged about amongst the stuff to the front of the wheelchair with me again saying "not that one, the one at the back" getting a bit exasperated!
When he finally left, I laughed hysterically cos I think I was losing it by then!
Little did I know that he had actually been on the phone to the hospital when he came through to ask me that question and I'd ignored him! Oops.
Finally about 8.30pm they gave Jack some Diazepam and he was asleep within minutes. I left soon after.
He didn't have a good night. He slept for only an hour and was given more sedation at 4am. Today was slightly better but still he was all over the bed. He did manage an hour this morning.
More bloods taken this afternoon and there was good news. His kc (I think I got that right) levels have halved as they were really high which means that he isn't burning so much muscle now. He is still retaining fluid but is sweating a lot so some is getting lost there at least. They have stopped the new medicine, thank goodness.
He managed another sleep around 7pm so maybe tonight will be better. Onwards and upwards.
He moved that much that he nearly slid out of his comfy chair. Holly and I had a right job trying to slide him back up but we managed it in the end. His arms were banging against the sides of the chair, his legs and feet were banging against each other and he was throwing his head back.
Putting him to bed was a total nightmare and he was half way down the bed and drenched in sweat again before I had even given him his medication! So I stripped him down to a vest and boxer shorts and took the duvet out of the bed. He didn't lie still til just before midnight. I couldn't put his overnight feed on until he was still as he would have got caught up in the feeding tube.
He did sleep for about 7 hours but as soon as he was awake again, off he went. When it came to getting him dressed, I was shocked to see how many bruises he had on his legs and arms. My poor boy. Getting him dressed was like taking my life in my hands. He kneed me in the throat, in the stomach and punched me in the face. By the time I wheeled him through to the living room, I was at my wits end. Holly's boyfriend David gave me a hug and I just broke down.
There wasn't time for that though as I'd to get Holly to horse riding. Poor Jack seemed to hit his arms and legs off of everything and getting him into the car was horrendous. It took 3 of us.
Back home, after putting him on the floor where he seemed to be safer, he got more hyper. He was moving so much that he made his way around the room! So I called the Neurologist in Edinburgh.
It was 4.15pm before the consultant called me back and we were at the children's ward within 15 mins.
It took four of us to pin him down to take bloods and put a cannula into his foot. I was practically pinning down his hip area and thighs, my head tucked in right behind his bum (cos I hate seeing them put needles in) when the consultant came into the room and asked what dose of the new medicine he was on. Thinking that he was talking to the nurse (as I'd given her all that information) I ignored him as Jack was wriggling like a snake underneath me and belting me with his arms.
When he repeated the question, I lifted my head outta Jack's butt area and caught the eye of the nurse who was trying really hard not to laugh at the look on my face. I was thinking WTF? How was he expecting me to think in the position I was in, pinning down a child who was fighting me like a tiger, battering me senseless and who had filled his nappy with a very unpleasant aroma which was filling up my nose and rendering me speechless.
As he looked at me expectantly, I realised that he did, in fact, expect me to answer so I had to get my shit together (pardon the pun) and answer him. I told him the dose but said the box of medicine was in his bag at the back of his wheelchair. He then rummaged in his feed bag with me saying "not that one, the one on the back" as he then rummaged about amongst the stuff to the front of the wheelchair with me again saying "not that one, the one at the back" getting a bit exasperated!
When he finally left, I laughed hysterically cos I think I was losing it by then!
Little did I know that he had actually been on the phone to the hospital when he came through to ask me that question and I'd ignored him! Oops.
Finally about 8.30pm they gave Jack some Diazepam and he was asleep within minutes. I left soon after.
He didn't have a good night. He slept for only an hour and was given more sedation at 4am. Today was slightly better but still he was all over the bed. He did manage an hour this morning.
 |
| Peace at last |
He managed another sleep around 7pm so maybe tonight will be better. Onwards and upwards.
