This blog post is part of a series that I began for telling our story. You can read the first post here.

From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.

From my sister, written on May 8 on CaringBridge:

The update from last night is lost in cyberworld somewhere, so I will try to catch up on things.

Samantha is still having seizures.  They took her for an emergency EEG to try to see what is going on, but an EEG is like taking a video of something – if what they are looking for doesn’t happen during that time it’s harder to see (it’s much more complicated then that, but this is an easier definition).  

Yesterday her oxygen was dropping low and they were debating about moving her back to the 9th floor – not the PICU but the intermediate care, where the nurse to patient ratio is less.  So far though since that happened it has stayed stable so she is still on the 10th floor.  

Samantha was also doing a lot of gulping and gasping while she ate yesterday and today and then threw up twice today.  They switched the nipple on her bottles to a slower flow and this will hopefully help this out a lot.

Tomorrow may or may not start the transition to Health Bridge.  Time will tell.  Stephanie and Travis also have some other decisions to make about who/what will coordinate her care once she is released (there are many opportunities/choices for what/how to receive care long term from here).  Please keep this in your prayers as well.  Thank you and have a blessed day!