Sunday, 2 October 2011


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.

Peace at last
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.


  1. Oh my goodness -- what a rough time for you all. I hope Jack continues to improve without that particular medication in his system.


  2. Poor baby, baby Jack. I am thinking Momma may have as many bruises as her son at this point too.

    He looks so comforted and secure in that bed and I hope they figure out these meds for him. He shouldn't have to suffer like this Lyndy.

    I hope he [and you] are able to get some rest and this will be okay.

    Bless you all. Lots of love, good thoughts and prayers to you my friend.

  3. I hope all goes well with him off the new meds. What is your next plan of action---I mean, after you get some much needed sleep! God bless you sweetie- I just don't know how you do it. I would be a total wreck having to deal with hospitals, idiot doctors, meds, figuring stuff out, caretaking...hope you can get a little break soon.

  4. Bloody hell I hope they get the meds sorted out soon this is not good for any of you, I do not know how you manage to keep it together as much as you seem to are an amazing woman and a fantastic mother. Jack is lucky to have you as his mother.

  5. OH Lynn...nothing to say but hugs, hugs and more hugs.


  6. May God be with you and Jack and give both of you comfort.

  7. My poor friend, and that poor, poor gorgeous boy of yours. I agree that Jack shouldn't have to go through this. It must be terrible for you to see him like that. He looks so peaceful in his little bed there. All I can do is send hugs to you all and pray that the hospital can do something to ease things for Jack, and pray that you will have the strength to cope with his. Take care.

  8. Just awful for all of you ((hugs)), hope this week is better xx

  9. Lola - yes it's been hard going but things are improving
    SkippyMom - yes I have loads of bruises and I feel like I've been hit by a truck. That's what stress does to a body
    EmptyNester - next plan of action is an intravenous drip with alcohol in it for me! Only kidding! Don't know, just have to watch and see
    Jo-Anne Rambling - yeah it's been a bit crazy to say the least! I am barely keeping it together at the moment
    Sush - I know and they are much appreciated
    Don - thank you
    Thisisme - It was very distressing for all three of us. Thank god I called the doctor
    Looking for Blue Sky - yes it was, am hoping for the same thing

  10. I have been thinking of you off and on...I hope the meds work and he stops sweating and burning through his muscles. I hope you're getting some sleep yourself and through it all you gave me a giggle about your "position" while holding him. ;) Hugs.

  11. Wow, it sounds like you have your hands full. I'm so sorry that Jack is not well. Glad that you can still find time to laugh. Every Saturday, I feature jokes on my blog, so if you're ever having a blue day, check it out.
    I just stopped by from SITS to say hi; hope you find time to do the same.

  12. What a sad time you went through. I hope everything gets better with time and different meds.

  13. Lizbeth - I hope so too, it's been a tough few days
    Eve Gallant - I need a good laugh at the moment
    Belle - thank you :)


Laughter is the best medicine and it's free. Thanks for visiting my blog and I look forward to hearing from you.

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