Home and tubed

5 Jan

Well. Overall, that wasn’t as bad as I thought it was going to be. The insertion of the tube definitely WAS as bad as I thought it would be – Matilda cried and thrashed and had to be held down and then they had to do it again because it was in the wrong position so there was more crying and thrashing. Awful.

However, once it was in, things went very smoothly. She tolerated the feeds going in, the meds going in and doesn’t seem to have a burning desire to yank the tube out so all in all things are good!

Being able to deliver her meds without any fuss and bother is actually pretty great. And watching nutrition go into her is even better. I am feeling way more positive about this now that it is done. We have the support of the hospital who will be coming out to see us every couple of days to make sure everything is going well. We DO NOT have to insert the tube ourselves if it falls out, we can either wait til the RCH team next come out or take her into emergency where they can be the ones to traumatise her! Another positive is that all the equipment, the tubes, the pump, the tape, the bottles and even her formula is all provided at no cost to us. Which is wonderful. I can also happily report that the chaos of the new hospital downstairs is not reflected in the new wards upstairs. Everything looks great, the parent beds are much more comfortable than the old hospital and we even had a nice view of parklands!

I would still prefer the PEG to the nasal gastric tube – just seeing her with a tube is fairly heartbreaking. But I think I will be able to deal with this short-term. I am yet to find out when the surgery is booked for but hopefully not any longer that a couple of months. Other good news about the tube that I wasn’t sure about going in is that she will be able to swim and go to the beach, we will just need to make sure the tube is clamped and put on some waterproof tape.

The thing that we keep coming back to is that as long as Matilda is happy then we are ok. And coming home, listening to The Wiggles, even after having a tube put in, it seems that she is. 🙂



5 Responses to “Home and tubed”

  1. Pete January 5, 2012 at 8:14 pm #

    How’s the grin in that photo! Love her style…

  2. Juliet January 6, 2012 at 6:54 am #

    I’m so glad the procedure went off OK and even more glad that Tilda’s tolerating it. Not having to worry about fighting her to eat must make daily life easier. I hope you can relax and enjoy your time with her on leave. Love to all of you.

  3. Cally January 6, 2012 at 8:37 am #

    Happy New Year to Tilda and family.
    Tilda’s smile in the photo could light up a Christmas tree.
    Just gorgeous.
    Glad the PEG tube was a success.
    Better nutrition, better for Tilda.

    Better for Mum and Dad.

    All my love,

    Cally Xx

  4. Ruth Magree January 7, 2012 at 3:16 pm #

    You are amazing Tilda so much strength and courage! Xx thanks Laura for sharing your days with us.

  5. Carole and Garry Laird January 7, 2012 at 5:37 pm #

    Tilda, what a beautiful smile, despite it all! Thinking of you all.

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