August 7, 2015. Mom and I arrived at the hospital at 7:45 A.M. Dad was still receiving CPAP breathing support. We were surprised to see that he was not having dialysis, but we had scarcely put down our purses when Lucy, the dialysis nurse, stopped by and said that she had been told to set up the (traditional) four-hour dialysis session. As she left the room, Dr. Lu Pan, the nephrology fellow, arrived and said that they were going to try the four-hour dialysis to see how Dad tolerated it. Mom and I were emphatic that he was not yet strong enough, and that Dr. Yau had agreed with us yesterday that he was not strong enough. Either the doctor had been patronizing or lying to us, or he had neglected to update Dad’s chart. I was not feeling too charitable with my suspicions.

After the nephrology gang left the room, Shannon, Dad’s nurse, told us that Dad’s WBC count was still on a downward trend and was now 17.6. Although his liver was still in shock, his lab work indicated that it was recovering, albeit slowly. She put drops in Dad’s eyes and got him situated in bed and ready for the day. She told us that when the doctor stopped by on rounds, he would discuss Dad’s dialysis plan with us.

I tried again to get him to do some type of exercise but struck out. Although both of my parents could be pretty determined, it had become pretty obvious to me, and probably my husband, that I had inherited the stubborn gene from Dad.

During morning rounds we learned that Dr. Alfredo Vazquez-Sandoval was now the attending physician. He told us that he would order a transesophageal echocardiogram (TEE) to verify that Dad’s new heart valve was still infection free. In an attempt to reduce Dad’s sleepiness, the doctor said that he would reduce Dad’s dosage of Seroquel, which they were giving him for delirium. He also talked about replacing Dad’s nasal feeding tube with a PEG, which would be inserted directly into his stomach. After my father-in-law’s terrible experience with a PEG, I had some strong opinions about this option and refused to entertain the suggestion. Because of Dad’s low blood pressure, the doctor said that Dad would have the eight-hour (and gentler) dialysis session today. You would think that with Dad’s improved status, these morning meetings would get easier. If only. On the one hand, he seemed to be getting better. On the other hand, his prognosis was still guarded. The cynic in me thought they’d like to get him out of the hospital so that his death didn’t adversely impact their survival statistics.

Lucy returned shortly after 10:30 A.M. to set up Dad for another eight-hour dialysis session. Dialysis started shortly before 11:00 A.M. Dialysis made Dad pretty sleepy, so Mom and I decided to leave for an early lunch and to run some errands.

I had to work from home during the afternoon, but Mom returned to the hospital after lunch in time to witness torture in the form of a blood draw. Under the best of circumstances, my Dad is what’s known as a bad stick. Shortly after his surgery in May, a nurse used ultrasound to find a vein so that he could start an IV. Today, the nurse told my mother that they needed two blood samples for a blood culture test and that only one sample could be taken from the PICC line. Not surprisingly, the lab technician had a difficult time finding a good vein, trying four times before she was finally successful. I hope the day will come when we won’t need a vial of blood for some of these blood tests. Although Elizabeth Holmes’ company, Theranos, has come under fire from the medical community, I hope that they’re successful.

Around 2:45 P.M., Lucy increased the speed of the dialysis blood transfer. She had scarcely left the room when the dialysis machine started making noise, which prompted Mom to leave the room and look for assistance. She quickly encountered Lucy, who returned with Mom to the room and decreased the blood transfer rate of the dialysis machine. I had mentioned in an earlier post that the dialysis team had customized the different warning and alarm sounds on these smaller dialysis machines. When these systems encountered problems, ranging from low patient blood pressure to clogged lines, the room sounded like you were in the middle of the “Who Framed Roger Rabbit” movie. The sounds emanating from this machine were unnerving.

The physical therapist stopped by and left a printout of some simple bed exercises with Mom. Mom said that at some point during the afternoon, someone, perhaps a social worker, stopped by to talk to her about Dad’s experience. She didn’t get a card or a name and Shannon (the nurse) had not seen anyone. Because of my less-than-fond feelings toward the case managers, I was suspicious about why this woman had been there, but I didn’t have any way in which to follow up on this impromptu meeting.

When I returned to the hospital after dinner, Dad was sleeping. Because I arrived before the shift change, Shannon was still there and was able to update me on Dad’s condition. She told me that because of his TEE that was scheduled for tomorrow morning, he would be NPO during the night.

Dad was still sleeping and didn’t wake up when I rubbed his hands and feet and moved his arms, so I decided that it was time for me to leave for the night.

August 8. Mom and I arrived at Dad’s room at 6:30 A.M. The room was dark and Dad was still sleeping. Jennifer, his nurse, arrived at 7:30 A.M. and started her morning assessment of Dad. When she was finished, she told us that the night nurse told her that Dad was very agitated during the night. I wasn’t sure what that meant, but it didn’t sound good. On a more positive note, Dad’s WBC count was still trending downward.

Dad was still on BiPAP support from the night, but Dr. Hayek, one of the pulmonary fellows, said that he would put Dad back on CPAP after he was more awake. When Dad was sleeping, he sometimes quit breathing. It was almost like his body couldn’t remember to breathe when he was asleep–just another thing that made me nervous.

Dr. Brett Ambroson, the resident, came by to talk with us about Dad’s current condition. The TEE was still planned for this morning, and they’d be doing the procedure in Dad’s room. We were still waiting for results of the blood cultures from yesterday afternoon. Dr. Ambroson said that they were still working on a plan to transfer Dad to the dreaded CCH.

Dad got mad and frustrated and started flailing his arms. I used his anger and redirected it to more positive activities—like exercise. For about 15 minutes I was able to push against his arms as he struggled to raise them. It was the most resistance exercise that he had had in weeks.

At 9:40 A.M., Dad received his morning meds through his feeding tube. Shortly thereafter, he fell asleep and quit breathing. Fortunately, when the CPAP system detects that he hasn’t breathed in a few seconds, and the ventilator kicks in. He started breathing again after a few moments. He experienced a few more rounds of this breathing/not breathing scenario in the morning. His best breathing had occurred when he had been mad and exercising.

Dr. Vazquez and company stopped by during the morning rounds. He said that he was increasing Dad’s dosage of steroids to help with Dad’s adrenal glands and to help raise his blood pressure. He told me that the TEE procedure would be postponed until Monday, which meant that Dad had been NPO for more than 12 hours for no reason.

Dr. Munsche and the nephrology team stopped by and told us that Dad wouldn’t have dialysis this weekend. They plan to start dialysis again on Monday. She said that they should be able to continue dialysis on Monday during the TEE.

Dad had continued to have trouble maintaining steady breathing. Around 10:30 A.M., Dr. Hayek moved him back to full ventilator support. The plan was that they would move him back to CPAP support after lunch when I tried to get him to exercise. Maintaining a regular breathing pattern was another good reason to exercise him.

Mom and I returned to the hospital at 1:15 P.M. Dad was still asleep and still on the ventilator. We didn’t want to wake him, so we started reading our respective books and devices. Almost immediately, I fell asleep on the couch and Mom fell asleep in the chair. All three of us woke up an hour later when Jennifer and another nurse repositioned Dad in his bed.

Around 3:30 P.M., Dad started getting very agitated and I couldn’t get him to calm down. Jennifer and I discussed giving him Seroquel, the delirium drug, to avoid having to restrain him again. As it was, Dad’s agitated behavior was interrupted by some bedside treatment, and Mom and I had to leave his room. When we returned to his room 15 minutes later, he was sleeping. Mom and I didn’t feel like we were adding much value, so we left for home at 4:15 P.M.

When I arrived back at the hospital at 7:10 P.M. he was asleep, but restrained. While I was watching him sleep, his MAP dropped to 56. Dustin, the night nurse, came in and checked the monitor and said that it looked like Dad’s heart rhythm had also changed. He contacted the doctor, who told Dustin to start Dad on a saline bolus to see if they could raise his blood pressure without drugs. This was the first time that I was aware of that they had tried this approach to raising his blood pressure. To the layperson who didn’t know better, saline seemed like a better alternative than a vasopressor.

While we were waiting to see if the saline would do the trick, I asked Dustin about the restraints. He said that about an hour after we had left for dinner, Dad started pulling at his trach and then disconnected himself from the ventilator, so they had no choice but to restrain him. He also said that they would start him back on the Seroquel tonight.

At 7:54 P.M., Dad’s MAP finally rose to 65. I had scarcely exhaled in relief when it dropped back down to 56. I couldn’t be sure, but it felt like Dad’s low blood pressure was having an inverse effect on mine. It certainly affected my level of stress. Dustin checked again with the doctor, and they decided to continue the bolus therapy. After Dad’s MAP reached 68 and remained at that level for a while, I chatted with Dustin and left the hospital at 8:40 P.M. Between the restraints and his sudden struggles with hypotension, I wasn’t confident that Dad would have a good night. Nor was I sure that I’d get much sleep.