Day Zero Plus Twenty-four – Bummer!

Jeff showered and dressed in street clothes for the trip home.  Nurse Tom nabbed a wheelchair so we would have it when it came time to go home.  He said he’d help us get Jeff and all his belongings to our car in the garage rather than using the front entrance.  This seemed like a good plan to me.

The pharmacist visited to go over Jeff’s medications and to talk about the possibility of needing IV magnesium at home.  Tacrolimus has a tendency to deplete the electrolytes so potassium and magnesium are frequently prescribed.  Both are given orally but sometimes IV magnesium is called for as well.  He gave Jeff a pill box to help us manage all the pills.

Until about 4 p.m. we were still planning on having Jeff at home tonight.  He needed a blood transfusion before we could leave.  That was expected to finish around 7 p.m.  He also had a touch of diarrhea or maybe it was residual effects of the Ducolax he’d been given yesterday.  To make sure, the doctors wanted to check him again for C Diff which is dangerous if not treated.  Unfortunately, this required waiting for Jeff to produce a stool and since he doesn’t feel like eating…  The labs take about 24 hours to get back so Jeff fears he won’t be able to go home tomorrow either.

Dr. Lee did his post-transplant assessment of Jeff’s physical condition.  This involved a lengthy survey.  Other doctors tacked on a few surveys to Dr. Lee’s so lots of data about mood, pain, body image, anxiety, and impact of the disease on the patient’s work, activity and family was collected at the same time.  I acted as recording secretary to spare Jeff the discomfort of writing.  His dyslexia gives him a lot of trouble when he is tired so I read much of it to him.  It was interesting to hear how he perceives various aspects of his disease, treatment and the physical toll it takes.  I reserved comment so as not to skew the results.

During the first assessment, completed the night Jeff was admitted, Jeff did 18 laps in 6 minutes on a 50-foot “course” that Dr. Lee set up in the hallway.  Today Jeff did 15 laps.  Not too shabby.  Dr. Lee had him stand from a sitting position and walk 6 feet or so down the hallway.  This was videotaped.  He asked Jeff to perform various balancing feats, all of which Jeff did pretty well, I think.  I could tell that it mattered to him to perform well.  Dr. Lee used a dynamometer to measure Jeff’s grip and he asked him several times, “You’re right-handed aren’t you?”  Jeff’s left hand is less affected by the pain than the right so that the left hand is stronger right now.  Jeff reminded Dr. Lee that his problems are mostly on the right side.

Jeff slept off and on this afternoon and was very, very quiet.  He looked so sad.  I went to the car and got a clean set of pajamas that I had hoped he wouldn’t need but had put in the car just in case.  I was on edge and finally excused myself to go home.  I was afraid I was contagious, that he’d get agitated if I stuck around.  At home I cooked the enchiladas he requested for dinner.  I froze them so that he can enjoy them later, hopefully tomorrow.