Day 5: Sinai PICU (going home...) #SMA

We've decided that it's time to go home. Emily will still require more frequent treatments and increased BiPAP time, but we can manage with the home nursing and she'll be more comfortable there anyway. :)

So, time to go!! Thanks for all your thoughts and prayers. I'll try to update as the days go on.

I wanted to note a couple of things we have learned while being here:
  • Emily loses about 12oz/day of fluid through drool and suctioning. The staff was worried about Emily retaining water, so we did some science by weighing drool napkins and measuring the suction cannister. Add in sweating, breathing, and diapers and you get a much better measurement for fluids lost
  • If we bleed O2 into Emily's BiPAP tubing, 4L of extra O2 only amounts to about 31%. Keep in mind that 21% is room air. So, 4L of supplemental O2 may not be as much as you think.
  • A good way to maintain calories even when doing so many treatments like this is to use less water in the feed mix and supplement with IV fluids. That way you can run a slower rate and not worry about missing calories at the end of the day.
- Posted from my iPhone

Comments

Tina said…
Soooo glad you are all going home and can be together as a family! WOOOHOOOO!!! Hope Emily recovers soon.

Hugs and prayers from Chicago,
Tina, Ally and Family
Sky said…
HAPPY NEW YEAR!!!!! Good news to start off the new year, love it!!!
Laurel said…
Indeed! A Happy New Year to you since the Hospital will be behind you.
Nicholas Black said…
Wonderful news to wake up to on a cold morning! Like you, we know how good it feels to get back home from the hospital! Enjoy.