Still waiting to exhale

interlockingJuly 28, 2015. Six days since Dad returned to Memorial. The good news was that Dad was still with us. The bad news was that the doctors didn’t sound very hopeful about his recovery. Most of the positive feedback came from the nurses, and they weren’t doing cartwheels. Perhaps it was my imagination, but I thought the doctors, including Dr. White, were placating us. On the morning after Dad aspirated, I was advised by Dr. Anderson to let Dad die. I couldn’t shake the feeling that the doctors thought that we had made an ill-advised decision to continue with his aggressive treatment.

When Mom and I arrived at the hospital, we were pleased to see that Andrea was his nurse again. She was Dad’s nurse when he was readmitted to Memorial, and she was a terrific caregiver. She told us that Dad had briefly opened his eyes when she spoke to him earlier.

I asked Andrea about the results of his lab work, and his WBC count was up from yesterday, which meant that his body was still waging war against some infection. Shortly after our conversation with Andrea, the parade of residents started.

Dr. Pan, the nephrology resident, stopped by, quickly assessed Dad, and said that they did not need to dialyze him today.

Dr. Hidalgo, the neurology resident, stopped by and said that Dad’s ammonia levels were high, which might have an effect on his lack of responsiveness. Dad’s MRI was scheduled for later in the morning, and the doctor said she’d get back to us with the results of his MRI as soon as the test was finished.

The nurse manager stopped by to check on Dad’s feet and was surprised at how good they looked. The fact that the circulation had returned to his extremities was the best news that we’d received since his readmittance to Memorial. The wound care tech stopped by to look at his toes, and reduced the elevation of his feet.

Dr. Haenel, the hematology resident, stopped by and said that Dad’s platelet count was 27 (thousand), which was up slightly from yesterday. Although his platelet count was still very low, it seemed that it was stable for now, and he would not need a transfusion today. She said that they’d be watching his platelet count for any changes.

Dr. White and his entourage stopped by at 10:15 A.M. Not surprisingly, the good doctor was still very guarded about Dad’s prognosis but was mildly pleased that he had opened his eyes. Because pain killers can affect responsiveness, the doctor said that they would decrease Dad’s dosage of Fentanyl, which they had prescribed for pain. Personally, I wasn’t sure what good pain medicine did for an unresponsive person, but I assumed that they knew what they were doing. Dr. White mentioned that the hematologist had said that Dad’s elevated ammonia count might be affecting his mentation. Dr. White didn’t think that the slight elevation was enough to be the cause of his mentation problem and lack of responsiveness, but he said that would prescribe something to remove ammonia from Dad’s system. He also told us that the radiologist had compared Dad’s latest CT scans with his two previous scans, and the radiologist didn’t detect any change in his brain or other organs. He didn’t sound like this news was a big deal, but for the two people who craved any glimmers of hope, it was.

questionmarksThe big surprise of the week occurred right after Dr. White left Dad’s room. During the procession of residents and the attending physician, a woman kept appearing in the doorway, and would then leave. When the room was finally empty of providers, she entered Dad’s room and introduced herself as Aimee from the Patient Relations department. She told us that a hospital employee had contacted her office about Dad, and suggested that she meet with us about the events that led to his return to Memorial. I pulled out my iPad of notes and shared our concerns about some of our interactions with one of the CCH doctors. Aimee told us that they would investigate our complaint and get back to us in 30 days. I assured her that although we had complaints about one person, for the most part, we were pleased with the level of care that Dad had received from his providers. When she left, Mom and I were stunned and kept trying to guess who contacted Aimee’s office.

Mom and I left the hospital at 11:30 A.M. for lunch, ran some errands, and returned to Dad’s room at 2:00 P.M. We had hoped that while we were gone that Dad would have had his MRI, but he had not left the room.

Throughout the day, Andrea adjusted his Levophed dosage in an attempt to wean him off this last vasopressor. She said that while we were gone he opened his eyes again, but he was still not responsive. To me, it seemed as if he was sleeping with his eyes open.

At 2:15 P.M., the hematology team arrived. They said that they believed that Dad’s platelet levels were stable, even though they were still very low. They would continue to watch him, but they predicted that his bone marrow would begin producing platelets in about 15 days. I don’t know if these people understood the impact of their words, but I found it pretty promising that they were thinking in terms of the future for Dad.

Mom and I left the hospital at 4:30 P.M. and returned at 6:30 P.M. I noticed that Dad’s dosage of Levophed had been reduced again, which was great. We met his nurse, Dustin. Andrea had told me that he was great and that we would love him. When we met him, he didn’t really seem engaged, and informed us that he was also assigned to a new patient. Nurses generally spend the bulk of their time with new patients, so I was a little concerned about the level of care that Dad would receive overnight. During the couple of minutes that we spent with Dustin before he went to see his other patient, he told us that Dad did not have the MRI today but would probably go to radiology the first thing tomorrow morning.

While we were waiting for Dustin to return, Dad started moving his head and shoulders and repeatedly opened and closed his eyes. His eyes seemed to focus on me, and he grabbed my hands a couple of times. He seemed to be coughing and we couldn’t tell if he was having difficulty breathing. Mom got a nurse, who suctioned his trach, but she didn’t remove much in the way of secretions. It was so difficult to know what was happening to him. He couldn’t make any sounds, so we weren’t certain that he was coughing.

Crystal, the respiratory therapist, returned at 7:45 P.M. to administer oral care and ventilator maintenance. While she was suctioning Dad, he started desaturating, and his oxygen levels dropped well below 90%. She increased his oxygen level on the ventilator to 100% during oral care and then reduced it to 60% before she left. His oxygen saturation levels remained above 90% while we were there. His pulse had also been pretty high. It kept moving from a low of 98 to a high in the lower 120s, and once reached 133. What made these wild swings in his vitals so unnerving was that they constantly triggered the alarms on his monitors.

Before we left at 8:45 P.M., we spoke with the resident about Dad’s sudden movements. We had not seen Dustin since 7:00 P.M. For the first time since Dad was readmitted, we went home feeling a little less than comfortable about the level of care that he would receive during the night.

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