Discharged from Lunder 1024

We’re at Lunder 1024. David is resting, I am on my laptop (obviously). We’re waiting for the infusion person to come and set up David’s morphine pump in preparation for his discharge, which was scheduled for 11 a.m. It’s 1:53 p.m. now. ‘Hospital time’ is the mode of the day.

            During this past hospitalization a new plan went into effect. We changed to Good Shepherd Hospice. Since David’s is an unusual case, being 27 years old rather than 70 or 80 or 90, they will allow him to keep receiving active treatment at Cox to keep the leukemia at bay. Mostly that means platelets to avoid uncontrollable bleeding and hydroxyurea, which slows the growth of the leukemic white blood cells. So, we’ll continue the twice-weekly appointments, just like we’ve had for most of the past 14 months. It’s become a familiar drill: blood draw, complete blood count, including percentage blasts (the leukemic cells) and absolute neutrophils (the infection-fighting white blood cells; David’s counts has been zero for months.), possibly transfusions of platelets and red blood cells, then a converation and check-up with either Dr. Fathi or one of the nurse practioners, Judy Foster or Meghan Bergeron.

            Our hope is that David can hold on until Annie returns from China on August 10. Through the miracle of technology she is able to video-call David and will do that in the interim. Of course, as has been the case for over a year, we can’t predict from day-to-day what will happen. That’s true for all of us, really, but the probability of death is much higher for David.

            I feel calm at the moment. I’m a little nervous about training on all the treatments. As I learned from a social worker back in December, when David’s white blood cell count rose to an alarming 95, hospice is not what most people picture: 90% of the care is done by the family care-givers. The hospice personnel are on call 24/7 by phone and in an emergency can talk us through whatever we need to do until the triage nurse arrives, which should be within an hour, but the immediate crisis, if it comes, will be ours to deal with initially. I’ve had eight months to digest that information; I’m as ready as I can be.

Home again, home again, jiggetty jog.