Longing for Home

At night Phoenix Children’s Hospital feels like being in  a Hopper painting. The lobby closes at 8 pm and immediately everything becomes lonely and quiet except for the man riding the floor waxer. Getting inside after hours is a bit like running an obstacle course. There are days I race from the parking lot carrying my bags and arrive panting at the front desk. It’s easier than parking in the back street lot, creeping through a darkish, deserted area to finally enter an emergency room full of screaming sick children, only to wait until the security guards obtain permission from Sebby’s nurses for me to proceed. I would rather slide into home base through the front door.

I hurried down today because Sebastian was having an erratic heart rate. His doctor finally ordered an EKG. It came back normal. That was a great relief for all of us. He has been navigating through some liver complications as a result of his Host vs. Graft Disease (HvGD) and two viruses. One is gone already and the HvGD is responding to treatment as well. The other virus is the common cold. Simple for us; not so simple for him since his immune is suppressed. A CT scan is scheduled for today. He is starting to eat and that is helping to absorb extra bilirubin. Some of his meds have been moved to oral. His blood still has a few issues to be resolved. He has a final hill to climb before coming home. He has already conquered the mountain. Hopefully he will be chilling in his new bed soon!

In the meantime, Sebastian was moved to a new room at the hospital. It has a glassed entry area that can be closed off for extra protection. Thus far, it has been left open. The couch is even more uncomfortable than in the other rooms (You didn’t think I was going to leave everything alone did you?).  But once again, he has a lovely northeastern view  that includes Camelback Mountain. We are hoping for some good firework action today.


One Comment to “Longing for Home”

  1. Thank you for all your posts. Pat, Rosa, Zac, Jessica, Mary and I read today’s and are greatful.

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