Day 175

Ellie just lasted on high flow long enough to finish her test early this morning. She was exhausted and agitated today after a big day yesterday and a long night with not much sleep yesterday.

I had another family meeting with the doctors today. The CICU and NICU doctors have been chatting and the CICU doctors want Ellie to have the fundoplication, this is a procedure that tightens the sphincter at the top of her stomach to stop her vomiting. She will also get her hernias fixed and a PEG line- this is a feeding tube that goes through her abdomen straight into her stomach. This will save her having a feeding tube down her nose. It can last a couple of years and then will be removed once Ellie has out grown her reflux and has more energy to drink and eat.

All of this could happen at any stage from now. The biggest problem with this will be Ellie having to go back on to a ventilator.


Sleepy time in Elie’s bed

5 thoughts on “Day 175

  1. Just wanted to say big hugs. I’m sure the thought of surgery and ventilation is all a bit overwhelming. The bigger she gets, the stronger she will get and this plan sounds like its going to help with that. Love to you all x

    Liked by 1 person

  2. The challenges must seem never ending. What I wish for you is that one day in the hopefully not too distant future all the anxiety and fear will be but a distant memory. Much love xo

    Liked by 1 person

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