August 20, 2015. As Mom and I drove to the hospital, we realized that today would probably be Dad’s last day at Memorial. We were glad that he had recovered enough to leave Memorial, but we had reservations about the CCH. Except for a couple of cases (good people we had encountered), our feelings about the facility were not positive.
Mom and I arrived at Dad’s room at 7:40 A.M. to find Dad’s legs halfway out of the bed. His nurse, Pam, got him back into bed and then called the doctor about Dad’s delirium. I wiped Dad’s eyes with a warm washcloth, and Pam gave him some Fentanyl, an opioid pain medication, in his feeding tube.
Janie, the respiratory therapist, administered a breathing treatment of Albuterol, followed by oral care. Dad signaled that he wanted the speaking valve now, but he’d been having some difficulty breathing, so he had to remain on CPAP. Janie said that she would move him over to the trach collar around 9:15 A.M. to see how he managed.
Dr. Brett Steven Ambroson stopped by and said that the infectious diseases specialist had recommended a couple of antibiotics for the next few weeks, but added that Dad would probably be on some sort of antibiotic for the rest of his life, or until the antibiotics eventually did no good. Gad.
Pam said that she spoke with the doctors about Dad’s delirium, and they wanted to fully vent him at night and had ordered an extra dose of Seroquel for him during the day, along with more Fentanyl. She said that the extra meds were ordered because of Amanda’s claim last night that Dad had hit her. This claim bothered me. It might seem like I was splitting hairs, but Dad had been struggling with the group of nurses to keep from being tied up. During the flailing of his arms, she was struck. He did not deliberately strike her. Mom and I were in the room and we saw what happened, and we didn’t realize that anyone had been hit during the ruckus. It was only when they had finally restrained him that one of the nurses said that he had hit it.
Dr. Stewart stopped by to talk with us about Dad’s situation, including the recommendation to fully vent him at night and then wean him off of the vent so that he could get more rest and get back onto the day schedule for the trach collar. He said that the doctors at Memorial would recommend stopping the Seroquel and replacing it with a pharmacy-grade Melatonin, known as Ramelteon. He said that they had had good results with it at Memorial and hoped that the CCH doctors would want to continue it.
At 10:20 A.M., Michelle, the dietitian, stopped by for a routine visit to see if Dad’s nutritional needs were being met. I had sort of a love/hate relationship with this very nice woman, which had more to do with the tube feed than her. Because Dad had aspirated on his tube feed during dialysis, I asked if he could have the tube feed suspended during dialysis. She wasn’t wild about that suggestion because Dad would be in dialysis for about 12-15 hours each week and the nutritional loss for him could be significant. She said that she would speak with her counterpart at the CCH to devise a nutritional plan for Dad. Since her last routine visit with Dad, he had received about 90% of his daily nutritional goals. As she had done during her previous visit, she also recommended the addition of probiotics and fiber to Dad’s diet.
Dad’s DNR order was not valid outside of the hospital, so Mom had to sign a new one for the ambulance ride from Memorial to the CCH. We didn’t expect anything to go wrong, but it still gave me the willies to sign this document and then send him on his way. We had one final visit with Dr. Ghamande and his team. He pretty much repeated what Dr. Stewart had told us earlier. He also mentioned that Dr. White would be the presiding physician at the CCH next week.
At 11:37 A.M., Janie returned to Dad’s room and moved him back to the trach collar in preparation for his transfer to the CCH.
Five minutes later, the EMTs arrived to prepare Dad for the trip back to CCH. Because the cuff was deflated on his trach collar, Dad was able to chat with the EMTs without a speaking valve. He seemed to be in good spirits and didn’t exhibit any agitated behavior. The EMTs’ preparations were finished in less than 30 minutes. As they started pushing Dad’s gurney out of his room, Dawn rushed into the room with Dad’s speaking valve and installed it on his trach.
Mom and I arrived at the CCH at 1:05 P.M. and sat in the waiting room for about 20 minutes before we could go see Dad. When we arrived in Dad’s room, we found him chatting amiably with Dr. Randall Smith, our favorite doctor by far. It seemed as though Dr. Smith was conducting a getting-to-know-you type of interview, but he was actually trying to assess Dad’s cognition. Before he left the room, Dr. Smith said that he was going to request a PT assessment for Dad today and have Speech Therapy get started on swallow therapy. We were so glad that Dr. Smith was the attending physician, if only for three more days. Mom and I finally went home for lunch around 1:15 P.M., and I started working online from home at 1:45 P.M.
Mom returned home from the CCH at 5:15 P.M. During the afternoon, I had inadvertently downloaded a virus from a training website and was now being held captive by one of our IT techs while he tried to fix my computer. I was eventually able to tear myself away from my terribly unproductive day and eat dinner with Mom.
We arrived back at the CCH at 7:05 P.M. Dad seemed to be enjoying his speaking valve and was speaking with a clear and strong voice. In that strong voice, he wished for a pair of tiny scissors that he could use to cut his restraints at night. In my perfect world, he wouldn’t have needed the restraints.
Gary, the respiratory therapist, arrived at 7:45 P.M. and administered Dad’s Albuterol nebulizer treatment and trach care. The treatment lasted for several minutes, during which Dad could not talk. As soon as Gary removed the nebulizer device, Winnie, the night nurse, arrived to administer the evening meds. Within a few minutes, Dad started drifting off to sleep. He had had a full day, full of non-stop talking for the past seven hours. We left the CCH feeling pretty confident that he would have an uneventful night and a good night’s sleep. Dad’s latest stay had gotten off to a pretty good start, and Mom and I were feeling much more optimistic about his return to the CCH.
Dr. Stewart then told me and Mom that he wanted to meet with us in a conference room to consult with us about some of Dad’s future possibilities. He started off this consultation by stating that they considered Dad’s recovery to be one of their best achievements and acknowledged our part in that success. He went on to say that he suspected that if Dad did go home, he could have more episodes of pneumonia. He continued by saying that Dad might never fully develop the ability to swallow, and if he did, he could very likely choke on his food and develop pneumonia again. He went on to say that although Dad might never be able to eat peas and carrots, we should let him eat what he wants, regardless of the consequences. He said that there was a good chance that Dad would go home with a trach tube. After that disheartening meeting with one of our favorite caregivers, Mom and I returned to Dad’s room.
August 9, 2015. We arrived at the hospital at 9:00 A.M. to find that Dad was still asleep and restrained, the nurse’s name was not on the board, and Dad’s feeding tube was empty. Two out of three of these situations were unacceptable. I went to the nurse’s station to find out who his nurse was and to let them know that his tube feed bottle was empty. A nurse entered the room with a fresh bottle of Nepro, changed out his tubing, and replaced the empty bottle. The nurse also told me that Dad’s nurse was Nicole, who finally showed up at 9:15 A.M. and introduced herself.
August 10. We arrived at 7:40 A.M. and noticed that Dad was already on dialysis. Before we arrived, they had drawn blood and ran an 
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, 
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.
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.
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.
August 3, 2015. It had now been 90 days since Dad first entered the hospital for his seven-to-ten day stay. When Mom and I arrived at 7:45 A.M., Dad’s room was a hubbub of activity. Dr. Phan, the nephrology resident, was assessing him and Emily, his nurse, was exercising his arms and legs. But the first thing that we noticed was Dad’s bed. Yesterday, Dr. Jimenez had told Dad’s nurse that he wanted to see Dad’s bed raised to a more upright position. I had envisioned that the angle of his bed would change from 30 to 75 degrees. What we saw instead was a bed that had morphed into a chair. It played music, automatically adjusted to specific angles, and could change into a chair. Was there anything that this bed couldn’t do?
While Mom and I were at home for dinner, I printed out some recent photos of Dad with the family. I wanted the hospital personnel to see him as more than the sick man that they attended in that hospital bed. He hadn’t entered the hospital as some sickly old man, and I wanted them to have a sense of who he was just a few months earlier. After dinner, Mom and I returned to the hospital around 6:50 P.M. and learned that Dustin was Dad’s nurse. I wasn’t impressed with this nurse, and I wasn’t thrilled to see him again.
I had never heard about procalcitonin (PCT) until today, when Dr. Jimenez mentioned that Dad’s current level was 48—down from 64. As soon as the doctor left the room, I whipped out my iPad and searched the internet for information about PCT. From what I read, a PCT level greater than 10 indicated a “high likelihood of severe sepsis or septic shock.” You didn’t have to be a PhD to know that a PCT level of 48 was pretty bad.
When Dr. Jimenez and his entourage entered the room, he said that Dad was “one tough guy.” He said something about an albumin transfusion (protein) to help with absorption, but I was too excited to remember everything that he said. Mom and I knew that Dad was still in the woods, but we felt that he had finally found the path out. Before the doctor left, he told Melissa, the nurse, that he wanted the bed raised to more of a sitting position. This day also marked the first day since my father’s return that we didn’t hear something about his grave prognosis.
Shortly after 10:00 A.M., we met 
When Dad was transferred from the CCH to Memorial, his flowers could not come with him. Cut flowers and plants are not permitted in the ICU. I had been thinking about it for a couple of days, and I was now determined to brighten up Dad’s room. After lunch, I cleaned the vase that had held his sunflower arrangement, took it back to 
July 28, 2015. Six days since Dad returned to 
The 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.
Tale of Two Parents 