Last Day of the NG Tube

6 Feb

It was my first day back at work today. It was nice to be back, nice to catch up with everyone, nice to think about other things. And then at about 10:00, I received a phone call from the Royal Children’s to ask whether we would like Tilda to have her PEG surgery tomorrow!

Of course I said, YES.

So we go in tomorrow about midday. I imagine the actual surgery will be done at about 3 or 4. It doesn’t take too long and then she will stay in the hospital being monitored until Thursday. I am very relieved that this is being done now and just really hope that that it will help her to gain some strength and recover some of her sparkle. We will keep you all posted.

While we are in there, we will also see if we can get someone to look at her head support. She has started to sit with her head dropped forward which looks so uncomfortable.














I posted a question about it on the Batten Support page and have been told that it is quite common for our kids to lose their muscle tone. She may require a collar/brace of some kind. Last night, I ended up fashioning a support out of a rolled up blanket. A bit rustic but I was quite pleased with the result!

I have asked her wonderful school to help me source something that would work a bit more effectively and will also get some advice from the team at RCH.







11 Responses to “Last Day of the NG Tube”

  1. Jac February 6, 2012 at 4:40 pm #

    Fabulous news! We’ll be thinking of you all tomorrow!


  2. Garry and Carole laird February 6, 2012 at 4:41 pm #

    Will be thinking of you all tomorrow. Love and best wishes Carole and Garry

  3. Nadia Packer February 6, 2012 at 4:43 pm #

    That’s great news, all the best for tomorrow, we will be thinking of u, so keep us posted x x

  4. Milli B February 6, 2012 at 4:47 pm #

    Guys that’s great news about the PEG….we’ll be thinking of you all tomorrow….lots of love to you xxxxx

  5. Emma February 6, 2012 at 7:49 pm #

    Wow, what awesome news !!

    Best of luck; as always,we’ll be thinking of you all. xx

  6. Daryl Linnane February 6, 2012 at 7:53 pm #

    Wonderful news ! You are all especially in our thoughts tomorrow and the days that follow…… Daryl

  7. Kylie February 6, 2012 at 8:11 pm #

    Hooray! Go PEG!

  8. Juliet February 7, 2012 at 8:20 am #

    GOOD LUCK!!!!!

  9. Diane February 7, 2012 at 8:25 am #

    That is good news. Much love Di

  10. Ken and Wendy Brown February 7, 2012 at 6:37 pm #

    Very glad to hear that Tilda was finally having her PEG surgery. Hope all went well today.
    We send our love.
    x Ken and Wendy

  11. Terri Beggs February 7, 2012 at 9:37 pm #

    Hope all went well today xx Terri

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