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.

Belly Pain Treated

            David is still inpatient on Lunder 10. The belly-pain crisis resolved Sunday night. The CT scan showed some sort of blockage in the small intestines near his stoma. A surgery resident arrived later that evening and used a catheter to relieve the pressure. (There may have been a kink in the plumbing.) The simple five-minute procedure worked immediately and the vomiting and hiccupping ceased. She said those were classic symptoms of an intestinal blockage.

            Monday and today have been quiet. During the belly-pain episode David’s throat stopped hurting. I’ve heard that the brain can only process so much pain, so perhaps the belly pain short-circuited the throat sensations. But now the pain is back. It’s somewhat less than before, but it hurts to talk or cough or swallow. He tolerates warm milk and the ever-popular hot honey water. Fruit juice burns his throat.

           

            Matt and I slept in David’s hospital room Sunday night. Last night we all slept at home. This morning I puttered around doing laundry and ‘light housekeeping’. I spent the late afternoon with David and Matt. Matt is about to take the T to Logan airport and fly back to Chicago this evening; he plans to return to Lexington on Saturday.

Another Sabbath

            This morning I dropped Matt off at MGH at 8:30 a.m. and I went to church. I stayed all three hours and it was glorious. The meetings were inspirational and the friends I saw very supportive.

            This afternoon David has been awake a few times, but mostly dozing or (hopefully) sound asleep: it’s impossible to tell. His throat isn’t bothering him much, but he’s had severe belly pain. They did an x-ray which showed a blockage, and a CT scan. We don’t have the results of that yet. He’s vomited a few times, which looks very painful.

            Jim had a peak experience heading the Alan and Mary Cannon Family Reunion in Shelley and Blackfoot, Idaho on Friday and Saturday. Alan and Mary are Charlotte’s parents, Jim’s grandparents. They were instrumental in his life and he has worked hard the past two years planning and organizing and shepherding this reunion into existence. It’s been a long labor of love. Sam and Savannah were able to join him in Idaho and are with him this minute. They’ll fly back to California and he’ll be back in Massachusetts at 7 a.m. I’m so grateful he was able to enjoy the fruits of his hard work. And I’m grateful he’ll be home soon.

            Matt has been here since Wednesday night. He was planning to fly back to Chicago this evening, but decided to stay a while to be with David and me.