Friday, 17 June 2011

To Edinburgh and back

It has been a busy week for us here in the Mckenzie house.

On Tuesday I made the 8 hour round trip to Edinburgh with Jack to see the Neurologist. My Dad came with me and thankfully he did most of the driving. Before we left, Jack had a session of Craniosacral Therapy at 9am with Joanna. He was very sleepy and so she was being quite gentle with him but I think he was kidding us on cos at one point, he had a wee smile to himself but we clocked it! Wee monkey.

Joanna and I were having a bit of a laugh as she was the one who had suggested I get a subscriber button but being the technophobe that she is, she still hadn't worked out how to do it! She was mortified that she still hadn't clicked on that button 6 months later, so she did it straight away after reading about herself in my Blogaversary post. She thinks she has managed it now. Tee hee hee, only time will tell.

Jack slept for the first two hours of our journey to Edinburgh. I sat in the back with him as he has been having quite a lot of seizures recently and I needed to activate his VNS with his magnet. I was also giving him water boluses through his peg enroute and setting up his feed pump for his lunch. Not easy to do in a moving car let me tell you!

We arrived in Edinburgh at 2.10pm and were waiting in the corridor when Jack took another seizure. The epilepsy nurse called us in at that point and we'd to navigate the corridor with Jack's arms flung wide, which is  really difficult when you are trying to get past other people and other children in wheelchairs and buggies. I could feel my stress levels rising. Hopefully in the new purpose built hospital the corridors will be much wider.

Sick kids hospital in Edinburgh  (source)

We had a lot to discuss but very quickly it was decided that we should up the dose of one of Jack's epilepsy medications. I was gutted because we had managed to reduce the meds by 6 mls a day but as she explained, Jack has grown quite significantly since she had last seen him and his weight had increased to so he was no longer on a strong enough dose for his height and weight. She also programmed his VNS to go off every 3 minutes for 30 seconds instead of every 5 which should help control the seizures too.

After our discussion in November, it was decided on this visit that they would take more blood from myself and Jack to have another look at his chromosomes to see if there was anything else going on. I saw this as quite a positive thing because the more you know, the better it is for managing treatment of your condition. Jack was a real trouper getting his blood taken whereas his mum absolutely hates hates hates needles and was starting to hyperventilate at the thought! You'd think having had chemo years ago it would have made me immune but no such luck. I am a total wimp! They gave me a form for Father of the Year to take to his doctor so that he can get his blood sent off too. He is supposedly due home next week so I asked his Dad to let him know that he needs to contact me.

pic from here

The other thing we talked about was Jack's epilepsy protocol.  At the moment, since Jack was taking so many seizures lasting over 10 minutes, it was decided by a different epilepsy nurse that no rescue meds should be given until the seizure lasted 10 minutes and then to give more rescue meds 10 minutes later and call an ambulance. This meant that we weren't calling the ambulance so often but then conversely it meant letting Jack seize for 20+ minutes which wasn't an ideal scenario either. Damn scary actually.

So we drew up another protocol whereby rescue meds are to be given after 5 minutes and if he is still seizing 5 minutes later then an ambulance has to be called but no other rescue meds to be given. This is a big improvement and I am really happy that the time has been reduced but I am also terrified.

Terrified because this will be similar to how it all was a few years ago. At one time we ended up calling an ambulance 3 times in one week! Once in hospital, we were often there, weeks at a time, away from home and I was torn between being there for Jack and still being there for Holly. My stress levels were so high and I felt like I was on a constant adrenaline rush and not in a good way I can assure you!


The difference between now and then is that Holly is now 17 and if Jack is transferred to a hospital further away, then she is old enough to be left on her own if need be. Diz has already offered to come and stay with her if the need arises so I know that the two of them will get on just fine.

I wont get the new protocol for a few weeks yet so it is not in effect yet. Hopefully by that time Jack's new dose of meds will have kicked in and the VNS will be more effective too.

Then Wednesday night, I took Jack to see Holly in her show with the Out of Darkness Theatre Company. It was called The Dark Cabaret and was held in Buckie High School to highlight bullying, fitting in at school, peer pressure etc. It was really good, very well done and highly entertaining considering there were only 3 people on stage. I missed the first ten minutes of it because Jack had a seizure and needed changing so I was panicking that Holly would think that we hadn't come to see her but then she caught sight of us when Jack made a noise. I was able to give her a wee wave and I could relax then.

She had such a laugh doing this and she came home with a big fat cheque so that can't be bad for doing something that you absolutely love.


  1. I really like it when you keep us up to speed on all that is going on with the 3 of you. A busy time for sure but hopefully some very good will come out of it. Linda is doing quite well and had the staples removed on wednesday and her incision is looking better every day. I have booked a couple of day at the goat daily B & B the weekend of the 2nd and 3rd so she can relax in style and also visit with her Aunt Frances so that should be enjoyable. Hi to Jack & Holly and yall have a wonderful weekend.

  2. I just don't know how you do it Lyndy - I would be terrified for my child to seize, let alone for so long [Did she really say 20 minutes the first time - um, wow! Glad it is protocolled at 10] You are to be commended - I wish I was there to give you a hug and a help.

    Bravo to Holly - definitely a bonus to be paid to do what you love and I just know she was fabulous. Is she going to study theatre in college or turn professional after high school? I wish her the best.

    Hugs to you my friend. I hope you get some rest and that Jack has a quiet weekend.

  3. sounds like a hectic week.
    And you know if you ever end up here in Glasgow, give us a holler and we'll come running - well, hobbling, but we'll be there!!

  4. As you say, quite an eventful week. I really feel for you, having to deal with all this on your own. It must be so frightening for you when Jack is having one of his seizures. Like SkippyMom, I pray that he will have a quiet weekend. Well done to Holly on the show.

  5. I'm so glad that I don't have to cope with seizures and I hate needles too! I've something for you over at mine btw xx

  6. Hope things go well with all of you! Holly will be alright and please drive safe!

  7. It must be hard to try to give Holly the attention you think she deserves. I can see why you feel so stressed. My prayers are with you.

  8. i felt frazzled just reading about the seizure and the arms akimbo trying to get through hallways of a busy hospital aaaargh

    the 20+ min seizure policy sound ...horrific, glad thats not happening. I hope the shorter protocol doesn't mean too much time in the twilight zone(hosp)

    Congrats to Holly ,getting paid for something she enjoys is brilliant!

    me too,hope you have a quiet weekend.

  9. Sounds like a busy week! Hope you find time to relax! Stopping by from lady bloggers!

  10. Odie - I am glad that Linda is doing well. I used Bio oil on Jack's scar after his op and you hardly notice it now and that was just using it twice a day
    SkippyMom - Yep she did say 20 minutes the first time! And yes Holly would love to study theatre and this space!
    Julie - it's been a bit manic I must admit
    Thisisme - we had a very chilled weekend after our busy week
    Looking for Blue Sky - Oh thank you, I will take a look :)
    Adorkable Ditz - I will :)
    Belle - it used to be quite hard but not so much these days as long as we don't start being in hospital too much
    IWBY - frazzled is a perfect description of how I was feeling
    Classy Career Girl - thanks for popping in :)


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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