Sunday - September 02, 2007
Sunday, September 2, 2007
Day +54. New month, new season, holiday weekend. Labor Day in the United States is tomorrow (Monday) and celebrates a rest from work and labor. It marks the official end of the American summer calendar and the resumption of autumn season schedules: work, school, sports and other cyclic parts of life. This 3-day weekend is a last inhalation...an inheld breath...before we plunge into change! Exhale and start back to routines and responsibilities.
Even for Jessie, who isn’t quite ready for discharge, change is in the air. We’re taking lessons and making some shifts toward outpatient awareness. Getting trained. Asking questions. Working on physical stamina, and mental alertness. Slowly discontinuing a few medications and converting others to oral forms versus IV administration (so that she can take them wherever she is).
Up north, daddy’s readying the house with a new air ventilation/filtering system, and slowly cleaning, sorting, discarding, organizing. Pulling together the virtual classroom technology so Jessie can be part of the new school year, as much as possible, whether she’s hooked up from Boston: hospital, clinic or Ronald McDonald House; or from home in Ipswich.
QUIET DAY: For this weekend, Jessie’s stable. All of the “big news” for Jessie is scheduled in the next few weeks, such as the upcoming lung surgery. Meanwhile, we’re just remaining safe and unremarkable.
In the transplant unit, you cannot feel the holiday-ness of the weekend. It’s slow. Uninhabited. Volunteer rotations are all in flux, as students return to school, so the hours of the play rooms and resource rooms are cut to staff coverage only. Fewer hands, just as many needs.
In the isolation of room 614, the unchanging dimness of the light and the background hum and hiss of oxygen and heating systems run non-stop, creating a somnolent droning noise. The television plays the same shows, over and over. Jessie doesn’t want to listen to books today. Or use her computer. She’s tired and off-beat.
Inexplicably, we seem to stay awake until 3am most nights, and then we’re snoring through the change of shift between night and day, exhausted by how off-kilter our body’s clocks have become. And yet, Jessie doesn’t nap during the day. She simply cannot sleep, day or night, except for the twilit hours around dawn. Yawn.
Today she has a nose bleed from low platelets. Odd. Lots of transplant kids get them in the midst of transplant, but here we are...engrafted, on the upswing, and finally her nose starts gushing! We order platelets... stat... and they show up 2 hours later... long after the hour-long rush of nasal blood has tapered off. Oh, well. Finally, to pass time, Jessie does a craft.
In the late afternoon, we take another ride out to the garden (with the help of Molly), pushing both wheelchair and pole. The wheelchair and pole must remain within 1-2 feet of the chair, or it yanks all the tubes that run directly into Jessie’s arm and chest to her heart. But hey, we get outside.
We put down a blanket and help Jessie out of the wheelchair, so she can stretch out flat on the grassy ground, and look up into the blue vault of the late afternoon sky. We lay flat on the blanket and watch birds skimming the air and planes coming and going. Yoga for the brain. Mmmmmmm.
HOME AGAIN: Daddy and Sarah hike out from their Vermont campsite to the cars today. And make the trip home with the Marsh and Smith families. They arrive back in Ipswich late in the day, with all of their gear. Lots of washing and unpacking to do! And tomorrow, they’ll be organizing Sarah’s back-to-school backpack and making the transition to the realities of September.