Fluid and weight disbursed:
3.7 L albumin & lasix diuresis – Tuesday
3.3 L abdominal paracentesis – Wednesday
2.4 L compression ace wraps – Thursday
Total = 8.4 kg weight = 18.5 lbs lighter in 3 days on the same scale!
Problems caused by the edema include the large blisters on Teri’s left foot that formed on Thursday and have made it painful to walk. Looking at Teri’s taut skin, and worried about additional blisters, I realized we had to do something. I fashioned mummy wraps with ace bandages in lieu of compression stockings.
Vicissitudes at home
Teri putters about with a full palette of disability tools – grabbers, extenders and the like. Dad’s walker serve as both upright support and ad hoc wheel chair. She is opening mail, talking a bit on the phone, watching movies but not yet reading or doing e-mail. Her emotions run high (Jack on skype) and low with tears that represent the condensation of the long haul, her disability, and simply not feeling well.
We have spent 6 of the 8 days of Teri’s release from the hospital at the Day Hospital for 8 or so hours per day. Part of the long out-patient haul. Sometimes, we close the place and in fact have had difficulty exiting the key- controlled doors.
It is definitely busier for me at home trying to meet Teri’s specific dietary needs and taste bud desires, household chores and nursing (IV, drug and dressing change) requirements. Aina from Columbus came and helped us for 3 days, and Monica and Kevin, Elena at the Day Hospital, and Sharon dropped by.
A book
I read a little after Teri goes to bed. I just finished “Cutting for Stone” by Abraham Verghese, the third book (My Own Country, My Tennis Partner) by an Indian-Asian internist now at Stanford. I highly recommend it. It is the epic saga of the interwoven fates of two Indian-British twins who grow up in war-torn Ethiopia. The incredible characterizations are interwoven with the intricate medical details. This really doesn’t do it justice.
Bumps in the road vs. big picture
Teri hates it when the BMT team or I refer these endless medical challenges she encounters as ‘bumps in the road’ (e.g. blisters) as compared to the ‘big picture’ mountains that have to be climbed and traversed (e.g. engraftment, graft vs. host disease). However to her, whatever the panoramic perspective of the medical viewpoint, each of the bumps that causes pain and suffering become personal mountains to her. That is just being a bump in the road is no comfort to her.
Finally
Terrible tummy cramps last night kept us both awake trying various medications and measures to no avail. Although we had a planned Day Hospital visit, we went in early to be evaluated by the covering resident and BMT attending. The initial abdominal x-ray was OK with some dilated small bowel loops and the CT showed an edematous small bowel loop, excess stool on the right side and other previous findings remaining the same. The attending as expected suggested that Teri might best readmitted and she reiterated her stance that she was not crossing that river.
Sunday’s medical verdict is: We can go home, but no free day tomorrow, back at the hospital for re-evaluation.
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