Dad’s Many Ducks

Upon entry into Dad’s room, each visitor freshly dresses in a yellow isolation gown, a yellow duck mask, and a pair of bright blue gloves.  It is as if each visitor has come to Dad’s costume party wearing the same duck costume.

8:00 a.m.

Mom and I arrived in Dad’s room at Moffitt.  Dad said he was feeling better than yesterday.  He had already received a platelet transfusion between 5:00 a.m and 6:00 a.m. since his platelet count needed to be at a minimum of 25 for the bronchoavleor lavage procedure today.  (He did receive pre-medications this time prior to the transfusion.)  Dad had been restricted from food and beverage in preparation for this procedure since midnight.  Dad was hungry.

Harmony, transplant physician assistant (PA), came in to check on Dad.  She asked if he had any nausea or coughing.  He said he hadn’t.  Harmony had noticed in Dad’s chart that he had experienced a slight fever overnight.  She informed us that Dr. Chan and Dr. Walsh, both from pulmonary, would be coming by this morning, and Dr. Baluch, infectious disease, should be coming by, too.  Dr. Ayala and Harmony were to return to see Dad about 10:00 a.m.

Dad was taken for his bronchoalveolar lavage (BAL) procedure.

Dad returned from the BAL to his room very drowsy.  The post-op procedure was for the nurse to take his temperate and monitor his heart rate and oxygen for one hour.  Dad was to take sips of water at 11:45 a.m.  If he did well with the water, he would be allowed to eat lunch.

Dr. Ayala came in with Harmony, physician assistant (PA), and one other.  After the BAL, Dr. Ayala felt it was prudent to keep Dad for another 24 hours.  Dr. Ayala said that Dad could not begin his stem cell transplant on Sunday as originally planned.  This was now his the third delay.

Dr. Ayala said he would talk to Dr. Baluch, infectious disease, about how she was going to address the fungal pneumonia.  Dr. Ayala believed they could proceed with the stem cell transplant after Dad has been on an anti-fungal treatment for 1 – 2 weeks.  Yet, he needed Dr. Baluch to determine the course of action.  The anti-fungal medication may be administered orally or intravenously.

Dr. Ayala said Dad’s skin looked fine and that Dad looked stable.  Dr. Ayala said that Dad needs to walk and stay active.  Dr. Ayala was hopeful that Dad could get started with the stem cel transplant in the next two weeks.  Dr. Ayala said he would communicate with the donor about rescheduling.  Mom’s greatest concern is that the donor is available.

I asked Dr. Ayala whether or not Dad should receive another brentuximab vedotin treatment.  Dr. Ayala said he will to speak to Dr. Sokol, hematology oncology.  We want to keep the CTCL minimized as much as possible while Dad’s transplant continues to be delayed.  Dad asked about receiving neupogen shots to keep his white blood cell count up since we believe Dad’s fungal pneumonia is due to his white blood cell count being so low.  Dr. Ayala agreed with Dad’s request. Dad will need to continue to have blood support (neupogen shots, blood and platelet transfusions).

Dad should get his central line catheter dressing changed tomorrow, Saturday, before he is discharged.

A man from respiratory therapy came by to check on Dad’s breathing.  The therapist was pleased with Dad’s vitals.  He let Dad know that Dad could have oxygen if Dad wanted, but the therapist didn’t seem to think Dad would need it.

A dietician came by to check on Dad’s eating.  Dad said he has been slowly losing weight.  The dietician was going to place a standing order for a Boost milkshake with each of Dad’s meals to increase his caloric intake.

Dr. Paruolo, infectious disease fellow, visited Dad.  Dr. Paruolo informed us that Dr. Baluch was out sick and that Dr. Velez was today’s attending infectious disease doctor and would come by this afternoon around 3:00 p.m. or 4:00 p.m.

Dr. Paruolo said that the preliminary results of the BAL would identify the infection as fungal or bacterial.  It could take days, even weeks, to obtain a firm diagnosis since fungus grows so slowly.  The lab holds all cultures two to six weeks.  Dr. Paruolo said that the new nodules on Dad’s latest CT scan were alarming to the team.  Dr. Paruolo documented Dad’s travel history to know where he has lived and visited during his lifetime including visiting places for even one week.  This was an amusing exercise since Dad was still under the effects of anesthesia.  Dad’s brain was in a fog as he was trying to recall all the places he had lived and traveled.  His “intoxicated” reactions were comical when I would remind him of places he lived and traveled.  I got a good giggle. I think even Dr. Paruolo was slightly entertained.

Dr. Paruolo said that Dad would be scheduled for a 2 week follow up with Dr. Baluch, infectious disease, in the Blood & Marrow Transplant (BMT) clinic. The plan is to send Dad home on (broad-spectrum) anti-fungal medication.  As the cultures grow and if the doctor believes a different medication would better target the infection, Dad would be notified and prescribed a different medication. Dad will have another CT Scan to view the impact of the anti-fungal medication.

Mom’s head was spinning from trying to keep track of the numerous visitors, understanding their role and comprehend what each was saying to us.

Dad finally ate lunch.  I worked with Dad to select the food and beverages he wanted for dinner tonight and for all three meals tomorrow.

Unfortunately, the food at Moffitt is not the least bit appetizing.  Bland and dry are the best adjectives to describe all the options.  I know that Moffitt overcooks all the meat and poultry to reduce any risk of a foodborne illness, which is critical for immunosupressed patients.  Yet, no one finds shoe leather beef and rubbery, dry chicken delicious.  It is not a surprise that patients lose so much weight.  Germán, Dad’s nurse technician, shared his view of the unappealing menu and questioned “how hard is it to make good food?”  I wonder what Germán eats everyday at work.  He probably packs his own scrumptious meals.  I certainly would.

I left Mom and Dad at Moffit to take care of Daughter and Son.  Mom planned to stay overnight with Dad in his room.

Mom and Dad are still living in Tampa on two suitcases of clothes.  Nearly all their clothes are still at their house in the panhandle of Florida.  I ran into Target to pick up a new set of pajamas and a robe for Mom.  From the sleepwear department, I FaceTimed with Mom to get her input on color and pattern choices for her pajamas and robe.

While Mom was choosing her preferred pajamas over FaceTime, Dr. Velez, Dr. Paruolo and one other from the infectious disease team came into see Dad.  Mom flipped around the FaceTime camera so that I could virtually participate.  The team of doctors, dressed in their yellow masks and gowns, gave me an enthusiastic wave with their blue, gloved hands.  Dr. Velez said that the initial diagnosis from the BAL is pneumocystis pneumonia (PCP), which is an illness caused by the fungus Pneumocystis jirovecii.  PCP is one of the most frequent and severe opportunistic infections in people with weakened immune systems.  Dr. Velez prescribed Dad two anti-fungal medications.