Still here...
We've been able to come down to 2Litres on Noah's oxygen, but seem to be stuck there. We are waiting to see respirology to re-evaluate what is going on and what our plan should be. Still hoping that we can wean Noah off the oxygen soon, but that may not happen as soon as we'd like. So talk today is of the plans that need to be put into place in the next two weeks for our trip to happen...he may need continous oxygen while we are there. Our other issue is that I also thought that we had things organized with the airline and our oxygen use, however the airline is trying to make things more complicated. So between the airline, our home oxygen provider, respirology and the wish foundation, I am getting nervous about the last minute details that need to be ironed out between them all.
Seems all a bit overwhelming today and wishing it could just be easier...probably doesn't help that I am so beyond tired. Praying that we will be able to wean him before our trip, and that the travel issues will get sorted out.
On September 21/05 we were blessed with a beautiful son. Born with a chromosome 12q deletion (q15q21.2), the challenges were many...cleft lip/palate, complex feeding issues, developmental delays, failure to thrive, multiple infections, blood clots, asthma, sleep apnea, GI and pulmonary bleeds, TPN dependency and kidney issues. Noah embraced life and taught us how to love. On July 29/09, Noah's journey ended, leaving us on a new journey...this journey on the pathway of grief...
About Me
- Nichole
- I am mom to 3 beautiful children. I also work casual as a nurse. Our life is a crazy one, and nothing like we ever expected it would be. Yet, this journey has changed me and the way I view others. And it has helped us slow down and enjoy the most precious things in life. I wouldn't trade those lessons for anything.
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4 comments:
My heart is heavy as you sit in the hospital waiting for Noah to rebound and as you wish you could plan more for your trip. God is right there with you, Nichole. His hand is upon you and your family and He hears your cries! Hugs for you and my Bean!
Yes, we are praying too. God has done miracle aftermiracle for noah, and we are believing he has another one right around the corner. We will pray, and I will put out a prayer chain, also to our Pass Christian group. mom
We'll be praying for all the details to sort themselves out. God is really good at that sort of stuff :)
Thinking of you guys lots...
Just stopping in to say hello!
I am a little confused, because I thought I already posted a comment to this post? I think I have read it about 5 times! lol
Anyway...still praying for precious Noah and wondering how he is doing! :)
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