Day 353

Deb’s Update from Yesterday – Ellie is doing well on low flow. Deb and the girls enjoyed a 2 hour walk. Ellie has never been away from her hospital bed for that amount of time. The older and the more interactive Ellie gets the harder it is to say goodbye and leave her at the hospital. Ellie had a big vomit last night after her 6pm feeds so they are slowing it down tomorrow.

Daddy Day

Daddy day again today and the difference in Ellie this week was striking. Since I saw her on Monday she is:

  • Sitting up by herself
  • Rolling around and moving easily around her bed
  • Drinking and eating more
  • Laughing and playing more

It was so nice spending time with her and she is doing really well on her low flow. Her stats overnight last night were good but we are staying on 600mls of Oxygen for now (she was saturating between 95-99% as opposed to 100%). It was really nice taking her for a walk without a 25 minute deadline to get back to her room.

I guess the biggest thing going through my mind is that the portable oxygen tank that we now take on walks is something that some kids go home on. Obviously it is not ideal lugging a tank of fire accelerating gas with us everywhere we go, but the thought of having her home is starting to feel tangible.



3 thoughts on “Day 353

  1. So glad the thought of going home is feeling more of a reality. BTW, Ellie is so not bald – I can distinctly see some peach fuzz on top of her head! x


  2. Oxygen tank sounds fine if it means she will be home sooner rather than later and what a wonderful feeling this must be for you all knowing the time is getting closer. So Hannah think about moving over as I am moving in soon(Ellie).👏🏻👏🏻🍼🍼

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