August 5, 2015. When Mom and I arrived this morning, Dr. Brett Ambroson, the resident, was finishing up his morning assessment of Dad’s current status. We were pleased to learn that the vomiting episodes from the previous day had stopped. Dr. Ambroson also noted that Dad would now move his extremities when prompted by him or the other care providers. When I asked about Dad’s WBC count, the doctor said that it was down slightly from yesterday. I wasn’t thrilled with the very slight decrease, but at least the steady upward trend had been arrested. While speaking with Dr. Ambroson, Lucy and Cheryl, the dialysis nurse and her aide, prepared Dad for another eight-hour session.

When the providers left the room, I shut the door and told Dad about the events that started on July 22. Although I did all of the talking, it was a very uncomfortable and disturbing interaction. He seemed to be very mad and appeared to be silently shouting at me. He then ignored Mom for the remainder of the day. I never knew why he was so mad.

Svenja, the trach nurse, stopped by and told us that she would be switching out his trach tube for one that was longer and softer. She explained that the new tube might help to wean him off of the ventilator and help with the air leakage problems that he had been experiencing. After Svenja inserted the new trach tube, I had her deflate the cuff to see if Dad might be able to speak a few words. He really tried, but we couldn’t understand him. I had hoped that I might be able to get some sense of why he was so mad. Our inability to communicate with him this time was disappointing but did not leave us with the feeling of devastation that we experienced on July 25 when we thought that he might die without being able to say good-bye.

During dialysis, Dad’s heart rate rose to 143 and stayed there and his MAP reached 103. Dr. Yau ordered an EKG and then ordered metoprolol to reduce Dad’s heart rate. Lucy also reduced the amount of fluid that was being removed during dialysis. These two actions returned his heart rate to the 70s-90s. At the end of his dialysis session, Dad’s heart rate returned to the 60s.

Mom returned to the hospital after lunch, but I stayed at home to work.

Like most of his days now, the afternoon was a mixed bag. He was now breathing on his own, with BiPAP support. However, his increased awareness seemed to increase his propensity to pull on his various invasive devices. To prevent the accidental or intentional removal of his feeding tube, the nurse bridled it.

At the completion of his dialysis session, Lucy stopped by and redid his dialysis catheter dressing. Because the procedure required a sterile environment, Dad had to wear a mask. The procedure took about 20 minutes and made Mom nervous. Because Dad was breathing on his own, she was afraid that the mask would inhibit his ability to breathe. The mask was over his face and not his trach, so I don’t know how much the mask actually interfered.

I returned to Dad’s room at 6:45 P.M to find him bent over to his left side with his head hanging off the pillow and his heart leads disconnected from his chest. His monitor was alarming, with no nurse or aide in sight. I was a little miffed, especially since no one came even after I used the call button. I finally flagged down Dr. Stewart, who helped me get him resituated and his heart leads reattached. You just have to hope that nothing goes wrong with you or a loved one during the shift change because you’re totally on your own.

Sarah was back as Dad’s night nurse, and Maggie, who was his nurse the previous night, was the charge nurse. Despite my earlier concerns, I was relieved that Dad was under the care of these two women. Maggie told me that she would be helping with baths again tonight and that they planned to also give Dad a shave. My father disliked facial hair, especially on himself. During his stay in the hospital, he had started to appear pretty scruffy.

Dad was much easier to get along with tonight. After Sarah assessed him and got him situated in bed, he spent most of the evening holding my hand until I left at 8:00 P.M.

August 6. Mom and I arrived at the hospital at 6:45 A.M. Dad’s nurse, Sarah, said that he had had a good night. True to their word, the night nurses had bathed and shaved Dad, and he looked much better. Dr. Ambroson said that Dad’s numbers were trending in the right direction, but he didn’t share those numbers with me. I asked him if Dad could see the physical therapist today. Physical, occupational, and speech therapy always took a backseat to anything else. Dialysis had prevented Dad from receiving PT yesterday. When the good resident had left, I told Sara that I wanted to speak with Lynette, Dad’s case manager. Yesterday, Dr. Yau had made a vague passing comment about transferring Dad to the CCH, and I wanted to follow up with the case manager.

At 9:15 A.M. Dad started having something akin to a panic attack. He indicated that he had chest pain, and then his heart rate spiked to 144. He stayed panicky and tried to tell me something, but I couldn’t make out what he was trying to tell me. At 9:45 A.M. he was transported to the interventional radiology department, where they replaced his tunneled catheter with a PICC line. I accompanied him so that I could sign his consent form. During the trip through the labyrinth that is the back halls of the hospital, the battery in Dad’s bed seemed to lose its charge. As wonderful as this bed could be, it seemed practically glued to the floor when it had no power. The transportation attendant eventually got the bed moving again, and we finished our journey.

When I returned to Dad’s room, Michelle, the dietitian, asked me if the plan was to send Dad back to the CCH. Shortly thereafter, Dr. George and the nephrology fellow stopped by and asked if the plan was to send Dad back to the CCH. Her reference to CCH was the second time in 15 minutes and the third time in two days that hospital personnel had mentioned this terrible place to us. I hated the thought of sending him back there.

When Lynette, Dad’s case manager, arrived, we had a tense and somewhat unpleasant conversation with her about Dad’s return to the CCH. When I told her that we didn’t like the care that he had received there, she said that we had alternatives. We could send him to a continuing care facility in Georgetown, some 50 miles south of Temple. When I told her that Georgetown wasn’t a viable option, she started some song-and-dance that S&W gave us options, and it was a valid option. Aside from the fact that we’d be unable to make multiple trips to the hospital during the day, I didn’t want my mother driving on the dangerous stretch of interstate highway that was in a perpetual state of construction. I would have preferred that Dad be transferred to the fourth floor at Memorial, but he was still too ill to move there, and they would not accept patients who received any sort of breathing support.

Dad returned to his room from interventional radiology at 11:00 A.M. The physical therapists stopped by at 11:30 A.M., but Dad refused to participate, and there was nothing that I could say to him that would change his mind. After that frustrating interaction, Mom and I left the hospital and went home for lunch. Before we left, I asked the therapist for suggestions of exercises that we could do with Dad between sessions to help build up his strength.

Mom returned to the hospital after lunch to find Dad sleeping, and he slept for most of the day but woke up shortly before Mom came home for dinner.

I returned to the hospital at 6:30 P.M., armed with a couple of small bottles of water. The physical therapist had told me that lifting the bottles while in bed would be good exercise for Dad. Unfortunately, he wouldn’t touch the bottles. I tried talking with him and shared some of his improved lab results with him, but nothing helped. I even tried to make a deal with him and told him that if he would exercise even a little, I would eat peas, which I detest. I still haven’t had any reason to eat peas.