Day Zero Plus Thirty-four – Smelly Pig, No Nurse, Invisible Man

Last night, around 7 p.m., Jeff realized that we hadn’t heard from the at-home nurse with an ETA for her morning visit.  Since he was worried about it, I called the on-call nurse who said Galina was scheduled and we should hear from her soon to confirm.  I wish I had remembered that Galina told us on Monday that she was off this Thursday.  We never got a confirmation call.  We expected a nurse to come around 8:30 a.m. since we have to hold Jeff’s 9 a.m. dose of Tacrolimus until blood is drawn to check his levels.  At 10:15 I called Becky, the coordinator/scheduler, and left a message asking whether we should continue to hold Jeff’s Tac.  At 11:30 I called again and finally reached Becky.  She said that they had scheduled Galina although she was off and they were trying to get everyone taken care of.  Becky said her first clue that something was wrong was when a normally calm patient called and was irate because no nurse had come.  She couldn’t say when someone would be coming but said we would hear from a nurse once one had been scheduled.  She instructed me to give Jeff his Tacrolimus.

Meanwhile, we worked out details for our trip to the city tomorrow.  The radiology department told us they didn’t want to schedule Jeff’s MRI until we determined which of two appointments with Jackie, the transplant coordinator, was the right one.  The system showed an 11 a.m. appointment as well as the 1 p.m. appointment we’d been given.  I called Dr. Porter’s office to verify that 1 p.m. was the correct one.  No!  The office will close early tomorrow for the holiday weekend so they moved up all the appointments.  Only they didn’t tell us!  Eleven a.m. it is.  Then back to radiology.  The earliest appointment they could give Jeff was 3:30.  Also on the Penn system is a 3 p.m. “Chemotherapy” appointment in “Chemo Chair #1.”  Jeff just about threw-up when he heard that.  He became nervous about it even though I assured him it was a mistake; obviously it was for something other than chemo.  I tried to find out exactly what but I never really did resolve that.  I wondered whether the MRI requires a dye or something; evidently not.  I asked what else it could possibly be for.  The receptionist in radiology thought it could be for labs since Jeff has a Hickman catheter; however, Jeff shouldn’t need labs since the nurse just drew blood today.  Hmmm…  Well, we’ll have a few hours between appointments to run around the Perelman Center to try to sort it out.  There are sofas in the atrium that Jeff can rest on between appointments.  It will be a long day.

I made the unfortunate decision to make pulled pork sandwiches for lunch today.  Jeff’s brother, Paul, was invited for lunch.  I started the pork loin in the crock pot late last night and Jeff woke up at 2 a.m. smelling it.  He thought he should get up and put the hood fan on but he didn’t.  Instead, he told me at 6:30 a.m.  Although my sensitive nose could barely detect the cooking smell, Jeff felt nauseous and the headache persisted.  By lunchtime, he recovered enough to enjoy not one but two pork sandwiches.  Kerry and Keith joined us for lunch, too, before heading out to Harrisburg, then Lewisburg, to pack a U-Haul with Theresa’s things for the move to Bensalem. 

I’d planned on visiting Pop this morning but my plans for the day were foiled by the late nurse visit - she finally came at 4:30 p.m.  I visited Pop after dinner with a masked- and-gloved-Jeff.  Jeff had wanted to see Pop for days so I called first to make sure Pop was up to sitting outside where Jeff could sit with him awhile.  I didn’t think it was a good idea to take Jeff inside.  Anyway, Pop looks good; he seems comfortable sitting in his wheelchair.  He insists the nursing care is not very good although today he acknowledged that he has had some good nurses.  My sisters are having a hard time seeing Pop there, knowing he isn’t happy about it.  I guess I am preoccupied with Jeff and am simply glad Pop is where professionals can take care of him.  That is the best explanation I can think of since I am usually the sap of the family.  Jeff is sad for Pop because he knows how hard it was to be in the hospital for a month when he knew his time there was limited to 4-6 weeks.  Pop doesn't know how long he will be at Manor Care. 

Some days Jeff is up to walking a block or two, sometimes twice in a day.  One day this week he didn’t want to walk at all.  Today he felt well enough for a short walk so we went up and down our block while waiting for a nurse.  With his long-sleeved shirt, gloves, mask, sunglasses and floppy hat, he really looked like the invisible man. 

Everyone thinks Jeff has good color and, as Nurse Dawn said today, he looks better than he feels. 

I wonder how Jeff’s donor is doing.  By now, I hope she has recovered fully.  It would be so nice to hear from her.