"You don't know until you ask"

After Sunday was such a rough day, I asked my school if I could take a day this week to be with Riley so that I can check up on her progress and help with her care.  Thankfully, the answer was "yes", so I could get a day with my girl and some time with my husband for the first time in weeks.  It was much needed on many levels.

The timing was also good, because apparently on Monday, all she did was sleep.  She was awake overnight, even with taking melatonin, but with how much she slept during the day on Monday, her being awake at night even with extra attempts to help her sleep is not surprising.  I came on a day that she was awake- so that was a big deal!

We were greeted with Riley getting extubated (again), hopefully this time for good!  They were please with her progress with her lungs, she passed the overnight breathing test again, so they wanted to move forward with taking out her tube.  It was replaced with the face mask bi-pap, then later with the the nasal bi-pap mask.

Riley and I got not one, but TWO cuddle times out of bed!  Getting her up and out of bed is important to the healing process and getting things in her lungs moving.  She also sat up for a while when OT came to work with her.  Some good movement time was very nice to see!

They continued to use different types of medical machines to help with her breathing.  She got multiple nebulizer treatments that have an additional "percussive" air pump that help the medicine get deeper in her lungs.  She's not a fan of it, but doing it during cuddles with Mom seemed to make it more doable.  There's also a machine that helps her cough to get the junk out.  She was not thrilled with it, but she was willing to try 2 attempts.  It did not help much, and the respiratory therapist actually advocated to skip that treatment if it isn't helping her, but it sounds like they tried again today to use it.  I think they're really trying to break up what's left in her lungs hoping it'll pass.

I'm very grateful for the time I got to spend at the hospital.  It's a very full but shorter week due to P/T conferences, but having that time in between the weekend and conferences to check in with Riley has put my mind more at ease until I can go back this weekend.  I think the time was very much needed not only for Riley and I, but Kyle and I as well.  We have not been able to see each other on the weekends due to commitments that were made prior to us knowing about this surgery, and its been a lot of solo parenting for both of us (at the hospital and home).  Just having some time to talk with each other, get some work done together, and just be together was nice.  Riley also treasures having "Mommy/Daddy time", so you could tell she was smiling when she saw the 2 of us.