December 2004
This week really got started on Tuesday as the writing on the wall proved accurate. In a lengthy meeting with hospital staff and administration on Tuesday evening, Chad's family was informed that because he no longer requires acute hospitalization he would be discharged from Kaiser Santa Teresa on Friday (12/3). With only two viable options on the table following discharge (a two-month stay at a Kaiser nursing facility in San Leandro or discharge to home), it was 'agreed' that Chad would be discharged on Friday to live at his mother's house. The number one issue is 24/7/365 bedside care & costs (copayments for DME, food, supplies, medications, etc) that will be necessary for Chad's daily needs. Although the state of California has programs to assist, the assistance will be minimal ('optimistically' seven hours per day) compared to what is required. The math is simple...that leaves 17 hours a day, every day, that caregiving is required. So...following 11 months of hospitalization (including one month in a skilled nursing facility), Chad finally left Kaiser Santa Teresa at 10:15 am Friday, December 3. His favorite nurses, lift team personnnel and administrators all said goodbye as Chad, with mom at his side, departed for home via ambulance. He took the transport very well and seems to be glad to be back at his mom's house. He has had quiet afternoons, listening to his favorite music, glaring back at the family dogs through the sliding glass door and just being 'attentive' to his familiar surroundings. By Sunday evening there seemed at obvious 'peace' about his state, a new level of relaxation, something different, and very positive.
Chad's first full week at home saw a host of home health vistors coming in and out to check on him as well as friends and family. There was his newly-assigned home health nurse, physical therapist, nutritionist, and an assortment of other Kaiser personnel. That added 'calm' that seemed to be present upon his arrival home was again present all week and except for moaning at various and unpredictable times throughout the day and night, he seems to be comfortable. Everyone, including Chad, seems to be in search of a new routine.
The past two weeks have been mostly about finding routines. There is no rhyme nor reason to sleep patterns and the moaning that seems to be everpresent day and night. Chad has been able to spend some time outdoors with the family dogs enjoying the sunshine and fresh air of the unseasonably warm December we have experienced thus far. He continues to have weekly visitors from the Kaiser Home Health Care nurses for blood draws, therapy and just some well checks in addition to visits from his private speech and physical therapists. He had a bout of high fevers and cloudy urine last week but was able to get it under control with just a little added medication to the normal regime. Chad was fitted last week for a special 'tilt-in-space' wheelchair which will provide him with more comfort and mobility although the leadtime for delivery of the new chair is 8-10 weeks. Some of his old friends stopped by to say hello as Christmas approached and Christmas day saw Chad in the backyard enjoying the visit of family. There is an end in site to the difficulties he and his caregivers experience in the current 'rental' hospital bed as a more sophisticated Hill Rom bed is being shipped from the mid-west courtesy of Chad's Uncle Chris and Aunt Diane.