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Wednesday, December 28, 2016

DAY 6: Discharge Soon?

EVERY single time I got KT settled down last night, someone came in to disturb her and woke her up.  She didn't have a very restful night for that reason - our timing was off horribly!  But...I monitor her pulse rate pretty closely all night, and last night was the first night it has ever gone below 100 bpm, which is a sign that her pain is decreasing overall.  In fact, at one point early this morning, I saw it at 67 bpm, which is pretty normal.  She was resting so well at that moment, and of course, someone came in and woke her up.  If it's not the main nurse, it's respiratory, or labs, or vitals, or housekeeping or something else.

Saline solution for hydration,
and feeding tube for milk. If
she can get discharged today,
we'll blow this joint!
Her sense of humor is coming out on occasion, though she still feels pretty sorry for herself: "Why do I always have to be in pain?"  She says she's ready to blow this joint and get over the the Ronald McDonald House (RMH), so we'll see what the Dr. says today.  Her swelling has definitely gone down, and the regular nebulizer treatments have thinned out her mucous substantially, so no more troubles with plugged trachs.  I think we could handle her care from the RMH, which would make her so much happier (and us)!

Her blood pressure is still pretty low, but we went for a good walk this morning.  She's not as dizzy, just weak.  It's nice to see her giggle every once in awhile now while watching a movie (The Avengers).  I'm getting QUITE good at understanding her sign language now, if I do say so myself, though she continues to use the text-to-speech app on her iPad when I don't quite get it, or when she communicates with the nurses.

We had a SECOND fire alarm on the 3rd floor last night!  Crazy.  Seems very unusual to have two fire alarms in one night from the same floor, different hallways.  Haven't seen Dr. Matthews yet this morning. Pam's been working on getting the equipment and other supplies needed for us to care for her from the RMH.

Thanks for your prayers - things are definitely improving!


  1. Dear Katie, Glen and Pam,
    Thanks for sharing Katie's ongoing journey. We are praying for great success with this surgery. I'm sorry things went so poorly with Dr. G in Cincy 5 yrs ago and I'm praying Dr. Matthews can finally give Katie some great results to help her start chewing again.
    We just finished Faith's 5th major jaw surgery which included wiring her jaw shut for 2 weeks after the 4 week distraction and she is ready to be done with surgeries for awhile. She has a sleep study scheduled for Feb 9th so we'll see what was really gained.
    Faith really enjoyed listening to Katie's experiences and especially related to her signing and using a text to speech app!
    Best wishes to get to the RMH in the next day or so.
    We'll be keeping up with your progress!
    Big hugs!!
    Robin, Faith and family

    1. Thanks, Robin! These kids who go through these major facial surgeries are troopers. I just hope it's all worth it in the end. Give Faith a hug from us!