Day 148

Its now 9pm and this update comes straight from the hospital. We received a call at about 5:30pm to advise that Ellie was yet again deteriorating and breathing heavily.

She has stabilised but is now on a sedative and NAVA again (one step away from intubation). Her chest xray is showing more collapse on her lungs again.

Deb and I are both here and waiting to see how she goes over the next hour before deciding if we stay or not. Her nurse and doctors are not worried for her immediate future but she really needs to turn a corner of she is going to avoid full intubation and sedation eventually.  Pneumonia is one thing that is suspected but it will take a couple of days to see what is going on.

As always, thank you so much for your untiring support and prayers, we are becoming tired with the length of this journey so we really value that you have all been so faithful in your support.



13 thoughts on “Day 148

  1. If we could reach right thru the phone and give you all a hug, we would. This isn’t a 42km marathon, its a 100km ultra marathon. Ellie is a warrior, full of surprises. I’ve no doubt she’s going to pull another miracle out of her back pocket…but it doesn’t take away from the physical and emotional exhaustion you must be feeling. You are all in our hearts x


  2. Dear Deb and Matt,
    You are all very much in our thoughts and in our hearts. We can appreciate what a difficult journey this is.
    Love and prayers
    Fay and Dave Hair


  3. “Hope springs eternal in the human breast
    Man never is, but always to be blessed” – Alexander Pope, An Essay on Man (1734)
    Mr Pope wisely noticed that people would continue to hope, no matter what the odds. I’m with Danielle – Ellie has pulled so many miracles out of her back pocket – how can we not hope for/expect the best of outcomes for her?
    More of those long distance hugs xo


    • You are in our thoughts and prayers. May God give you peace in your hearts as you continue on your journey trusting that you can let go when you need to as He has the strength to carry you all. Rest well tonight little Ellie, you’ve got some work to do xxx


  4. You are all in my thoughts constantly and I have the highest admiration for how you have handled this long and hard journey for your beautiful little Ellie. Hang in there and lots of hugs and prayers coming your way 💖💖xxoo


  5. Sending you all our energy! It has been such a long journey, but so worthwhile. Keep doing what you’re doing because it’s working! Despite the challenges, Ellie is always moving forwards. I’m so looking forward to the day when we bump into all 6 of you out and about xx


  6. I can’t imagine the roller coaster you have been on and are still on. Please know that you’re in my prayers for Ellie to pull through this yet again. She certainly is a warrior princess.


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