Day 11: Extubation tomorrow (#SMA)

So it looks like extubation day is tomorrow, day 12.  We are very excited, and a little anxious.  The last couple of days were VERY good for Emily, and a little stressful for us, for various reasons.  The important thing is we have a plan that works for all involved and Emily will start straight breast milk 6 hours before extubation.  We can't do regular feeds for fear of aspiration, and her IV's keep failing, so we don't want to risk trying PPN and losing an IV they need for medication.

We were very concerned about Emily's nutrition plan for this event, and one of our nurses (thanks Loni!) recommended we use breast milk b/c we can feed Emily closer to extubation. This was an excellent recommendation b/c we have a lot (thanks to our donor) and it will ensure she gets maximal nutrition, keeping her strong for the transition back to her BiPAP.  This is something we've never thought of, and a good trick for SMA families, or others, who are negotiating nutrition plans before and after extubation. Breast milk is considered a "clear" liquid and is allowed during the perioperative period.

So, Emily has hardly slept at all since Tue night (maybe 3 hours total!), but she has been super happy and observing everything, and everyone, with the utmost interest.  She is so curious.  She has been off sedation for two days now and just handles everything really well - after all, she is a veteran at this.

I predicted almost a week ago that we'd be home in a week -- I hope I'm right! If I'm not we won't be running out the door though.

Thanks for your prayers, and thanks for the meals delivered to our house this week!!  (don't forget to follow Diana or I on Facebook for more frequent updates - and more PICTURES!)


Sky said…
saying a prayer that all goes good, and that you are all on your way home soon!!!!!
Tina said…
Sending prayers for Emily and your family today - during and after extubation. I know you'll have some extra work after extubation, but one more step closer to HOME!!!

Tina and Ally