Sunday, 28 August 2011

Stop the bus, I wanna get off!

Sunday morning and I am sitting here enjoying the peace and quiet.

It has been some week!

Jack has had a hell of a lot of seizures this week. Monday morning I had to go into the school and explain his new epilepsy protocol to them and answer their many questions.

I had only just got back into the house and Holly was dropped home by the school nurse cos of stomach pains related to that time of the month. She looked awful so I gave her painkillers, filled up the hot water bottle she handed me and left her to moan and writhe about on the floor til it finally passed.

During this, I had a phone call from the school saying that Jack had to have rescue meds for his seizures and that they were now worried about his breathing so could I come. So off I went, bringing Jack's pep mask with me.

Straight away I could see that he was struggling to breathe but all that he needed to clear his airway was to cough. That's what the mask is for, it shortens the airway and therefore he has to breathe deeper and this causes the phlegm to move up his lungs and makes him cough.  I spent 20 minutes there and he was a lot better by the time I left.

Jack's rescue meds

In between all this activity I had also been in contact with Jack's epilepsy nurse explaining that his seizures were no better considering that his meds had been put up to the maximum dose and that maybe this was just a blip we are going through, that it might settle on it's own but just needed advice. She said she would talk to the Neurologist and call me back later.

Tuesday Jack had to have more rescue meds and then Crossroads called to say that Jack's carer was in hospital so therefore no care for me this week. My first thought was about poor Marion but as the day wore on, I started realising that this was no good as I am exhausted already!

Wednesday and Thursday was spent jumping every time the phone rang thinking it was the school re Jack requiring more rescue meds.

I picked him up on Thursday lunchtime to take him to Craniosacral Therapy and even arrived early! Believe me, that never happens cos usually the school is running late or I am!  Joanna was most impressed but cos I was early it meant she'd to run about getting things ready for us sooner than expected. LOL

Jack enjoyed his session although he had 2 small seizures while there. Joanna certainly put him through his paces but Jack is so funny sometimes cos if he doesn't want to do something, he just wont!

I also heard from Marion, Jack's carer, who texted me and said that it was her gall bladder that was playing up and that she would be home from hospital at the weekend but off work for a further two weeks. Poor girl, she must have been in such pain. Hope she feels better soon.

image from here

Friday the epilepsy nurse called to say they planned to add another medication to the two that Jack is already taking and she gave me the name of it so that I could look it up and check out the side effects etc. and then the Neurologist would call me next week to discuss.

BAD MOVE! I have forgotten just how awful the side effects of these drugs are when you read from a list of things that can happen. Logically I know that Jack has rarely had a side effect from his meds but reading the list was giving me palpitations!

I also was on the phone to Jack's social worker telling her that I could not go 2-3 weeks without a carer and that I am getting desperate now for the promised help, morning and night, that I had been given the funding for over 3 months ago! She thinks that she has found a company who can do home care for last....and she will get back to them. I know that she is busy but FFS!!!!

When Jack came home on Friday from school, I assumed all had been well but no, he'd had to have rescue meds again. My stress levels were getting higher by the minute.

Saturday Holly and I took off to the pictures while Jack was being looked after by his Granny Mac. We went to see Mr Poppers Penguins which was a lot of fun and very much a feel good movie. I felt better when I came out of there. Then we stopped for lunch on our way back and then went for a wander around the Findhorn Foundation shop before heading to this lady's house who was selling second hand children's books.

I let Holly choose them as we needed some more stories to read to Jack and we came out of there with over twenty books!

just a selection

We headed home to be greeted by Granny Mac with the news that Jack had to have rescue meds AGAIN!
Four times in one week! That hasn't happened in a long time so that makes the decision about adding another epilepsy medicine into the mix so much easier.

He was awake when we arrived home so Holly read one of his new books to him. It was so good that we all stopped to listen and were chuckling away listening to Spud the dog's adventures. Jack was the most impressed of all and he was riveted, never taking his eyes of his sister. It was lovely to watch.

Later that evening I spent training another carer so that if Marion is off sick again, or on holiday, at least I will now have a back up.

So last night, I just fell into my bed and I am hoping today will be a calmer one as my stress levels are pretty high at the moment. Jackyboy is trying his best to go to hospital to see his favourite nurses and I am trying my best to keep him the hell out of there!

Not sure I am gonna win this one :)


  1. Poor you - i'd have loved for you to be on Skye with us this week. We had such a good time and i realised that i DID need the rest and someone to chat to who has known me for years.
    Thing is - when you have a good worker and all is going well, you can't be a**d with the hassle of training. It's only when you get a time like this that you realise you should have. Alisdair said a couple of weeks ago he did have someone in mind, but wasn't sure about having them in with ho previous. All our workers have either met Peter or at least read thru his stuff and heard of him before they hit us.

    We did have a drink for you - why d'ya think we were hung over fro our filming!!!

  2. You are such a strong woman and your kids are terrific. I do hope you are able to rest up-

  3. Whew! That was one heck of long week for you Lyndy and poor Jack. I wish there was relief in sight, but I am glad you will have a back up for Marion.

    I know it is tough, but the love for your children shines through and you are admired for just how strong you are. Bless you sweet lady.

    Please tell Jack and Holly hi from me and hopefully you can get a bit of a break today - and Jack too!

  4. i could never live your are quite the trooper!

    i would have skipped the depression a long time ago and would be on my third or fourth breakdown!

    you are in my thoughts and prayers for some help and that Jack stays outta the hospital...

    i got nothing else 'cept positive energy and happy thoughts from across the pond...

  5. I'm so sorry Jack and you are having such an incredibly hard time. I do hope his illness calms down and he won't go to the hospital.

  6. Gosh, that has been one hell of a week. I hope Jack's new meds help and that you get some help! We loved Poppers Penguins too....a real pick-me-up movie:-)

    xx Jazzy

  7. First off...{{{hugs}}}

    I got stressed out just reading your post. I know you must be exhausted. I'm glad that you have a backup caretaker, so it's not all on you. And I'm hoping Marion actually had her gallbladder removed while she was in the hospital, so she's done with those pains and can be there for you again soon.

    Praying for the new meds to get Jack's seizures under control with no side effects at all, and that you see an immediate difference in them, so you don't have to jump every time the phone rings.

    And lastly, more {{{hugs}}} and praying for some well deserved rest for you!!

  8. OOOhhhh Lindy,what a week...(((hugs)))

    I hope this week settles,I was exhausted thinking about it.
    Hoping the new med helps and you don't need the hospital.I've had to close my eyes to the side effects column for my own meds,it's quite scary.

    ohh the quiet moment with Jack listening to Holly read,brought a lump to my throat, it makes the week worthwhile,that right there.

  9. Bloody hell what a time you have had I really feel for you I do not know how you do it......I do not think I would be able to cope if I was in your postion......

  10. Julie - Glad you were able to relax and chill out in Skye. I wasn't given the option of another carer up til now, so if she was on holiday or off sick, I just had to got without. But he's getting too big now for me to go a fortnight without help.
    Shelly - I'm only strong cos I have to be :)
    SkippyMom - here's hoping that today is calmer
    Bruce - positive energy and happy thoughts are all I need
    Belle - I hope so too
    Jazzygirl - yes it was so funny!
    Judy - thanks for your hugs, I needed them
    IWBY - it was a lovely moment and she is really good at telling him the story and it was a funny one too. Thangs for the hugs
    Jo-Anne Rambling - you would cope if you had to :)

  11. You are such an incredible person and mum!

  12. Twilightgazing - awww thanks :)

  13. Very interesting points. Thanks!

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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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