August 30, 2018. Mom and I arrived at Dad’s room at 8:00 A.M. Aspen, his nurse, and Amanda, his aide (CNA), were in his room and were changing his dressings and his hospital gown. I noticed that Dad’s breakfast tray had arrived and was still covered. When Aspen and Amanda had finished getting him ready for the day, Amanda and I helped Dad take an aspirin and a Midodrine pill with some of the Nepro on his tray. Nepro is a thick liquid, which helped to make the pills easier to swallow. When Amanda left, I grabbed a bath towel and placed it over Dad’s chest like a large bib. With some help from me, Dad ate most of his Cream of Wheat, a scrambled egg, a few swallows of Nepro, and a few sips of warm coffee. Dad had not consumed any caffeinated coffee for several months, but now I encouraged him to sip the coffee in the hope that it might help him to stay awake. His diet hadn’t restricted caffeine intake and caffeinated coffee was included on his tray, so I assumed that I wasn’t treading on dangerous ground, although assumptions in this place could be dangerous.
Helping Dad to eat was a bit challenging because he periodically fell asleep during the meal. Whenever his eyes were closed, I stopped feeding him. I would not let him put anything in his mouth unless he was awake with both eyes open. When he was finished with breakfast, I noticed that he had dried blood under his fingernails, and I grabbed a washcloth from the linen cart and started cleaning his hands. He bled easily these days, so there was no telling how his nails got into that state.
At 9:30 A.M., I had just sat down after cleaning Dad’s nails when Dr. Hunt arrived. He said that the orthopedic resident had stopped by this morning to change the dressing on Dad’s surgical site and said that Dad’s scar was healing nicely.
Dr. Hunt added that Dr. Garland from hematology/oncology had left a note in Dad’s chart, recommending that they stop giving Dad blood thinners. Evidently, the doctors were unable to determine if Dad had developed heparin-induced thrombocytopenia (HIT). This issue about blood thinners and HIT was frustrating, and it seemed like I couldn’t get a clear answer. Dad had a blood clot in his neck, he seemed to need a blood thinner during dialysis, and he had AFib, yet the doctors were withholding blood thinners. When Mom had a bleed that was most likely caused by Xarelto, the cardiologist just about had a conniption when the neurologist stopped her blood thinner. I can only surmise that every case is different and I shouldn’t try to apply a universal solution to an individual problem.
During Dr. Hunt’s visit, Dad slept like Sleeping Beauty and we could not rouse him. After the doctor left, I decided to get some coffee from the cafeteria to see if that would help keep Dad awake, but I couldn’t wake him enough for him to take a sip. I tried yelling at him and clapping my hands next to his ear, but nothing worked. I found this deep sleeping troubling. We had experienced challenges waking him during his hospital stay in 2015 that turned out to be nothing, but it still made me uneasy.
At 10:30 A.M., Amanda removed Dad’s heart monitor in preparation for his MRI. Because Dad was still sleeping soundly, I assumed that he would be easy to move and would be still throughout the imaging. However, moments later, the door opened and Sharon and Jim, two of my parents’ neighbors, walked into the room. As soon as Sharon said hello, it was as if a switch turned on inside of Dad’s head. Not only was he awake, but he was also alert with moments of clarity. I jokingly asked if they could stay at the hospital with us. During both of Dad’s hospitalizations, he would instantly transform from a confused state or wake from a deep sleep when my parents’ close friends entered the room. I never had a chance to ask anyone about it, but I wondered why friends might have a greater impact on Dad than his immediate family. Their visit with Dad was cut short when the transportation team transferred Dad out of the room for his MRI.
Mom and I visited with Sharon and Jim in the 6 North waiting room for about 45 minutes. When they left, Mom and I decided to wait for Dad in his room. As we entered his room, it sounded like we entered a room full of crickets. That familiar sound meant that Dad’s hearing aids were somewhere in the room, and near each other, and generating a lot of feedback. I eventually found them in the drawer of the bed tray and plugged them into their charger, which stopped the aggravating noise. Aspen later told me that as they were moving Dad from his room, she suddenly remembered Dad’s hearing aids and stashed them in the drawer for safekeeping.
Dad was still awake when he returned from his trip to the x-ray department. Moments after Aspen had him resituated in his bed, his lunch tray arrived. I was relieved that for once he would be able to eat a meal while it was hot. But as luck would have it, Angie and Judy from physical therapy arrived within seconds of the food tray. The hospital had its pecking order of providers and services at the hospital, and so did I. For me, physical therapy trumped food trays, so Dad would enjoy a lukewarm lunch after physical therapy.
The physical therapy team quickly got Dad sitting up on the side of the bed. Before they tried to have him stand, Angie hooked up his heart monitor while Judy adjusted the height of his walker. On the count of 3, they helped Dad stand up. He was still a little bent, but he stood up straighter than he had during his previous session. To help him stand straight, they had him look straight ahead at the large picture on the wall. Angie was able to get him to stand on his left foot and lift his right foot off of the floor. A few minutes into the session, they had a bit of a challenge getting Dad to keep his eyes open. I found it amazing that he could fall asleep during a physical therapy session. After Angie regained his attention, she had him stretch out his shoulders, and then she let him sit down on the side of the bed. After he rested for a few minutes, she had him stand up and then step to the left and then to the right, picking up his feet as he moved. Before they let him sit down again, he marched in place, albeit very slowly.
When he was back in bed, they had him lift each of his legs. Angie said that he did fine, but tomorrow she would like to see him lower them with more control (versus plopping them down on the bed). Because of his severe fluid overload condition before he entered the hospital, he would not have been able to lift his legs. Mom often had to lift his legs onto the bed at night. During this hospital stay, Dad had had several liters of excess fluid removed during his four dialysis sessions. His legs were now much leaner and lighter. I was glad that Mom was here to witness this good session. I had been disappointed that she had missed his first session with physical therapy.
After the therapists left, I was able to help Dad eat some warm soup and mandarin orange segments before the transportation tech arrived at 12:35 P.M. to take him to dialysis. Unless a problem occurred, dialysis sessions lasted about four hours. I assumed that Dad would not return to his room before 5:00 P.M.
After Dad was transported from his room, Mom and I ate lunch in the hospital cafeteria. Under normal circumstances, we would have returned home for a couple of hours, but Mom had an afternoon appointment with her cardiologist, whose office was on the first floor of the hospital.
Shortly before 2:00 P.M., David, the case manager, stopped by Dad’s room with a list of names of rehab facilities. Before Dad could safely return home, he would need a week or two of intensive physical and occupational therapy. We knew that we didn’t want to use Cornerstone, which is where he stayed following his previous surgery. The Brookdale Meridian, which is located less than three miles from my parents’ home, was Mom’s only choice. David wanted us to choose a couple of places, but we asked him to see if this one was available, and if not, we would choose another facility.
As we were walking to Dr. Ebert’s office at 2:30 P.M., my mobile phone rang and it was Jean from the Brookdale Meridian. She had a couple of questions about Dad and his possible checkout date. She also asked if I had any questions. If their care was anything like their responsiveness to new-patient referrals, Dad would be in good hands.
Mom’s visit with Dr. Ebert was basically routine, and she left this appointment with the medication refills that prompted her to make the appointment. Dr. Ebert is also Dad’s cardiologist, and she had many questions about his current status. I had contacted her before one of Dad’s appointments to inform her about his fluid overload condition, and she had tried to reinforce much of what I had been telling him about the consequences of his condition, with little or no effect.
When Dad returned from his dialysis session at 5:15 P.M., he was still wide awake. According to Aspen, he had the dialysis nurse call the nurses’ station a few times to see if his wife was OK. Usually, Dad sleeps through dialysis, so Mom and I were surprised to see that he was awake and alert when he returned. I marveled at the change in him since this morning.
After Aspen changed Dad’s gown and linens, I helped Dad with his dinner. I noticed that it seemed to take him a long time to swallow. When I asked him if he was having trouble swallowing, he said, yes, a little bit. I gave him a few bites of turkey and gravy, beans, and he drank a little Nepro. When it seemed that it was taking him a long time to clear his throat, I asked again if he was having trouble swallowing and he said, yes. When I asked him to explain about the trouble that he was having, he started snoring, putting an end to our conversation and his dinner time. By now it was 6:45 P.M., and Mom and I were tired and ready to go home. On the way out, I quickly explained Dad’s situation to Aspen. When I got home, I texted Adan and expressed some concern about Dad’s problems with swallowing. He responded and said that he would stop by in the morning to check on Dad.
Dad’s days were such a mixed bag. The day could start bad and end bad with intervening good hours, or any combination of good and bad periods. I was frustrated that we couldn’t seem to get one solid good day.