Watching and waiting

19 Nov

Our girl is a fighter and she is battling on. The problem is mainly her laboured breathing. When awake, she is quite agitated and even sleeping, you can see that she is working hard. We have been given morphine to administer through her PEG to help with this but it hasn’t been effective enough. Our night was not too bad, she slept quite soundly until about 5am then woke with some agitation. After a dose of morphine and her feed and normal meds, including her antibiotics , she has been sleeping quite soundly but still labouring.
The Eastern palliative care team are here and have hooked her up to a subcutaneous driver which will deliver continuous doses of morphine and midazolam to keep her comfortable. Contrary to what I initially believed, her being on morphine is not necessary a signal that this is it. Plenty of kids have had periods where they need morphine and then rally and come off it.
But it is all bloody scary.
In good news, her pulse is strong and she has been tolerating her feeds well.
We watch and we wait. Her tenacity is a thing to behold.
Thank you so much for all your warm messages of love and support. It is so very much appreciated.
I will update as much as possible.


19 Responses to “Watching and waiting”

  1. FiFi November 19, 2013 at 11:35 am #

    Sending Love XOXOX

  2. Christine Grover November 19, 2013 at 11:36 am #

    Just want to let you know that we are all willing Tilda to feel better soon and sending love to you xx

  3. Jon November 19, 2013 at 11:40 am #

    Thinking of you all.

  4. benita crocker November 19, 2013 at 11:47 am #

    Go Tilda – all our love xoxox – keep fighting xoxoxo

  5. Cally Berryman November 19, 2013 at 12:15 pm #

    Love surrounds . You are are doing the hard work. The rest of us are a circle that beams support to Tilda and you and your family. Xx

  6. Daryl Linnane November 19, 2013 at 12:33 pm #

    Hang in there Laura……we are all “batting” as hard as we can for and with Tilda, you and the family.xo

  7. Katrina Varcoe-Cocks November 19, 2013 at 3:36 pm #

    We’re all here for you. Sending loads of love love love XX

  8. Anne Bunting November 19, 2013 at 4:35 pm #

    Sending you all our love and feel helpless that there is nothing else we can do xxx

  9. Kirsten November 19, 2013 at 4:35 pm #

    Thinking of you all and especially your courageous little fighter! Lots of love xx

  10. Amber November 19, 2013 at 4:39 pm #

    Sending much love to the gorgeous and brave Tilda and love and strength to you and Simon xxx

  11. Eleanor November 19, 2013 at 4:40 pm #

    You’re all always in our thoughts right now xxx

  12. Kristy Dijkstra November 19, 2013 at 8:14 pm #

    Thinking of you all. My love & thoughts are with you at this time. And sending special cuddles for Tilda xo

  13. Sally Luckock November 19, 2013 at 8:42 pm #

    Dear Laura & Reg. I am thinking of you all with lots of love Sally L xx

  14. Lex November 20, 2013 at 6:11 am #

    Loads of love & huge hugs to you all. XX

  15. Juliet November 20, 2013 at 7:06 am #

    Thinking of you all. Great that you have the palliative care team there, too. Lots of love

  16. Irene November 20, 2013 at 9:35 am #


  17. Heather Barnes Jackson November 20, 2013 at 1:00 pm #

    Sending all of my love and prayers!!! xoxox

  18. Barb Melchior November 20, 2013 at 1:28 pm #

    Dear Laura and Simon,

    I read your blogs and feel great sadness for you both, and of course for Tilda and what might have been, but always I’m so impressed by your amazing courage.

    This is just to let you know that although our contact has been minimal we think of you a great deal and our thoughts are with you as you and Tilda continue the fight.

    Barb & Phillip

  19. Ken and Wendy Brown November 22, 2013 at 8:00 am #

    Hi Laura and Simon,

    This much be such a struggle for you both and you bear it so bravely. We send you and Tilda all our love and prayers.

    Ken and Wendy

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