nephrology – Page 6 – Tale of Two Parents

We held on to positive moments

Published on October 25, 2016 by mellowdee551 Comment

July 27, 2015. I was working from my parents’ home, and I would log on to my office network at 3:45 A.M. I had coworkers in India and Israel, and by starting at this time, I could work with them for two or three hours before I went to the hospital.

Shortly after 4:30 A.M., it occurred to me that my Millennial cousin might be more of a texter than an emailer. To ensure that he would read my email that I sent him last night, I texted him to tell him that I had emailed him the previous night. Sure enough, about an hour later he called me on my mobile phone. He wasn’t able to give me many answers, but he did provide me with information that I could research further so that I could converse with the doctors and ask reasonably intelligent questions.

Mom and I arrived at the hospital at 8:00 A.M., only to learn that Dad was still unresponsive. According to Kristina, his nurse, he would open his eyes and grimace only to a sternal rub and other painful stimuli. The sternal rub can be painful for anyone, but Dad had just had open-heart surgery a couple of months earlier, and I couldn’t bear to watch this exercise. He would not respond to or follow any verbal commands. I later watched the doctor inflict this pain, and it was hard to watch. Worse yet was the slow-motion response from my father. It’s an image that I can’t shake.

sunflowervase Carlos, the dialysis nurse, arrived at 8:15 A.M. and proceeded to prepare Dad for dialysis. At the same time, Dr. Fernandez, one of the fellows who worked in the ICU, performed a brief assessment of Dad’s condition. Following his assessment, he sat down with me and Mom and told us how pleased he was to see our devotion and attention to Dad, and added that he wished that all his patients had families like us. As he left us, he said that he thought that our prayers would be answered. It was a moment that would carry us for a few days.

Shortly after his dialysis session started, I put the radio headphones on Dad’s head. I left the headphones on him for about 30 minutes, but we still didn’t see any response.

Because Dad’s blood pressure and temperature dropped during dialysis, Dad’s nurse had to increase his vasopressor. It was discouraging to see the dosage increased, but it was still lower than it had been yesterday.

From the moment that we would arrive at the hospital, I would scan the halls to try to determine where the doctor was on his rounds and when he would arrive to Dad’s room. After he and his party arrived, I’d stand in the threshold so that I could eavesdrop on their conversation, which was usually more enlightening than his meeting with us. It’s also where I picked up some medical jargon. Today Dr. White and his entourage appeared outside Dad’s door at 10:20 A.M. As usual, he held court with his team of residents, fellows, pharmacists, and the nurse for several minutes before entering the room. He eventually agreed that things seemed to be progressing in the right direction—except Dad’s noggin. He also said that because Dad’s platelets were low again, he would request a hematology consultation. On a very positive note, the lowering of the vasopressors had improved the blood flow in Dad’s extremities, and Dad would not lose any toes!

When Mom and I returned from lunch at 1:00 P.M., we found Dr. Hildago, a neurology resident, in Dad’s room. Between the two of us, Kristina and I updated the doctor on Dad’s 83-day medical history.

After the neurology resident left, we were pleasantly surprised to see Pastor Don and his wife, Wynn, enter the room. Seeing the two of them had sort of a cleansing effect on our stressed-out emotions. Mom and I always enjoyed their visits and hated to see either one of them leave.

Dad’s tube feed had resumed yesterday, and the dietitian stopped by to assess his nutritional requirements and status. The current flow of Nepro was less than half of what it had been when he aspirated. The dietitian recommended that it be increased to 40 ml/hr, which would provide him with about 1,700 calories day.

At 2:15 P.M., the hematology team arrived. Because Dad’s lab work showed that he had Thrombocytopenia, Dr. White had requested a hematology consultation. According to the doctor, Dad’s platelets dropped when he became septic and required vasopressor support. From what the doctor said, Dad’s sepsis condition also increased his platelet consumption. To make matters worse, Dad’s infection and the antibiotics both suppressed the bone marrow production of platelets. For these reasons, the hematologists were not surprised that Dad’s platelet count continued to be low. They said that they would give him platelet transfusions whenever his platelet count dropped below 20. Following the platelet transfusion the other day, his platelet count now sat at 26, which was still pretty low.

Moments after the hematology team left, Dr. Burkholder, the neurologist, arrived with a couple of residents in tow. He told us that Dad should have an EEG sometime later today and an MRI either tomorrow or the next day, depending on various schedules. This brief encounter with the doctor was typical of how we interacted with the specialists. The resident or fellow would arrive and spend quite a bit of time assessing Dad, and then the doctor would pop in for two minutes, basically repeating what the resident had told us earlier.

Dad’s oxygen levels had been fair, and when Nikita, the respiratory therapist arrived, she increased his oxygen level on the ventilator from 40% to 50%. As she adjusted the ventilator settings, she said that she’d probably decrease the levels back to 40% later in the day.

Kristina had shown me how to exercise Dad’s arms. When she saw me moving his arms, she showed me how I could also move his legs. I had barely started exercising his legs when the EEG tech arrived.

After the EEG, which takes longer to set up than to administer, Mom and I left the hospital to run some errands and eat dinner.

sunflowervase2 When we returned to Dad’s room at 7:00 P.M., we were thrilled to see that Tyler was Dad’s night nurse again. Nights were scary for me and Mom, and knowing that Dad was in good hands gave us some peace of mind. Dad’s vasopressor dosage had inched down again, which was also wonderful to see. Unfortunately, the oxygen setting on the ventilator was still set to 50%, which meant that Dad’s oxygenation was still shaky.

While Tyler was getting set up for the night, I exercised Dad’s arms and noticed that he seemed a little flushed. Usually the hospital room felt cold enough to set Jell-O, but for a change, Mom and I weren’t shivering. When I checked the thermostat, I noticed that it was set for 75 degrees—a setting that we hadn’t seen before and would never see again. Tyler quickly adjusted it back to 68 degrees.

When Mom and I left for the night, Tyler was oiling Dad’s dry feet and said that he planned to wash Dad’s hair. If only Tyler could work every night.

Some clinical improvements, but still unresponsive

Published on October 18, 2016 by mellowdee551 Comment

sinus-rhythm-strip July 26, 2015. Mom and I arrived at the hospital shortly after 8:00 A.M.; I looked at Dad, and then over to his IVs. Amazingly, Dad’s night nurse, Tyler, had been able to wean Dad down to one vasopressor. Dad’s day nurse, Kristina, also noted that he was down to one antibiotic. Unfortunately, his WBC count had ticked up to 21.2. Dr. Pan, the nephrology resident, stopped by a few minutes after we arrived. He had reviewed Dad’s early morning lab results and recommended that they dialyze Dad again to remove more fluid, although they probably wouldn’t clean his blood.

Some of Dad’s other lab results looked a bit more promising. Although his poor liver was still in shock, his highly-elevated liver function had inched down slightly. The sparks of good news were tempered by Dad’s continued unresponsiveness.

eeg_wave When Dr. White arrived, he acknowledged that while there had been some clinical improvement in my dad’s condition, Dad was still critically ill and his mental status was not improving. To ensure that Dad hadn’t suffered a stroke or a bleed, he planned to order a CT scan. Dr. White restated his concern about Dad’s toes and thought that he probably would lose at least one toe.

A few minutes after Dr. White and his residents left the room, Rob, a PA who had worked with Dad back in May, stopped by. He said that he had seen us in the waiting room the other day and thought that we looked familiar. After he realized who we were, he wanted to stop by and see how Dad was doing. We didn’t have great news, but so far, Dad had survived four days longer than the original prognosis.

Stan was in Temple for the weekend, and he arrived at the hospital at 10:15 A.M. to stay with Dad while Mom and I attended church. At the church, our friends were anxious to hear about Dad’s condition. One friend is a nurse practioner with the dialysis center and receives a daily schedule of dialysis patients in the Scott & White system. She was shocked when she saw Dad’s name on the Memorial list. My father wasn’t a patient of hers, so she couldn’t access the details about his transfer, but she knew that the transfer from the CCH to Memorial wasn’t good.

According to Stan, Dr. Issac, the nephrologist, stopped by right after we left for church and said that they would not dialyze Dad today. Dr. White wanted to further reduce Dad’s vasopressor therapy. The process of removing blood during dialysis lowers a patient’s blood pressure, which would have been counterproductive to the daily goal.

The tube feed, which had been stopped on July 22, was resumed today. The thought of the tube feed scared me, but Dad needed the nutrition, and this was the only way for him to get it. The rate was restarted at 20 ml/hour, which was considerably less than it had been when he aspirated on his tube feed four days earlier.

Stan said that Dad was transported to radiology at 11:40 A.M. for his CT scan. He was returned to his room shortly before Mom and I returned from church.

musical-notes While Mom, Stan, and I were at home for lunch, I decided I would try some music therapy with Dad. KNCT, a local public radio station in central Texas, plays big band music on Sundays. Armed with a small radio and headphones, I hoped that having Dad listen to his favorite genre of music might spark some response from him. We returned to the hospital at 2:30 P.M., and I placed the headphones on Dad’s ears and turned on the radio. Maybe I’d seen too many movies, but I was disappointed when we didn’t detect any response from him. We also tried yelling at him, tickling him, and shaking his arms, but we still got no response.

Charris, his assigned resident, stopped by to talk with us about Dad’s apparent stupor. She showed us the CT scan results and the radiologist’s assessment. Everything seemed to be normal from a brain trauma point of view. She agreed that he was just about in a coma. She suggested that they request a consultation with a neurologist.

Around 5:00 P.M., a nurse entered the room and introduced herself as Melissa, Dad’s new nurse. Because the MICU had too many nurses for the number of patients, they had to send one home, so Melissa would be with Dad for the next two hours. Mom and I left around 5:15 P.M. to visit the next-door neighbors and share some of the bounty from my parents’ garden.

When Mom and I returned to the hospital at 7:00 P.M., Tyler was his nurse again and the other Tyler was the respiratory therapist. I probably shouldn’t have, but when Tyler said that he was doing something barbaric to see if Dad would withdraw from pain, I asked Tyler to stop hurting him.

Nurse Tyler’s goal was to further reduce Dad’s vasopressors overnight. Tyler performed a pretty thorough assessment of Dad tonight while we were there, and then showed me how to use the music on Dad’s super expensive bed. I set up nature sounds, which later confused a nurse’s aide who stopped by to take Dad’s blood sugar. She thought that there were crickets in the room, which really isn’t too unusual for central Texas.

Mom gave Dad a goodnight kiss, and it looked like he kissed her too. We left the hospital for home around 8:30 P.M.

Before I went to bed, I emailed my cousin, David, who is a cardiovascular diseases fellow at Brigham and Women’s Hospital in Boston. I updated him about Dad’s condition and then asked about his thoughts pertaining to my father’s mentation. My question was way outside of his specialty, but I was hoping that he might be able to help me understand my father’s catatonic state.

Taking it one hour at a time

Published on October 12, 2016October 14, 2016 by mellowdee551 Comment

sunflowers1 July 24, 2015. The call that we dreaded from the hospital during the night hadn’t come. We didn’t know what to expect today, but we had to take it one hour at a time.

When Mom and I arrived at the hospital, we found that Dad was back on dialysis, for the fourth time this week. According to Andrea, his nurse, Dad was less responsive this morning, which was not what we wanted to hear. She added that, according to his morning lab work, he was still suffering from metabolic acidosis. She had been able to wean him off of one of the vasopressors, but his blood pressure dropped below 65 MAP during dialysis, and they had to restart the vasopressor. When I asked her about his WBC count, she told me that it was up to 18.9, a 300% increase in less than 48 hours.

Dr. White started his rotation today as the attending physician. We now had what seemed like a long relationship with this doctor, and he didn’t pull any punches with us. He told us that because of all the vasopressors that Dad was taking for his low blood pressure, his toes were being affected and he might lose a couple of them. The doctor strongly suspected that Dad’s circulation problems would begin to move up his extremities. Dad’s liver was also in shock, and the good doctor said that he was surprised that Dad had been able to withstand the dialysis. He also stated that Dad’s pupils were nonresponsive and he did not withdraw from pain, even when taken off sedation. He reiterated Dr. Sanchez’s prognosis from yesterday in that he did not expect Dad to survive this episode. At the end of this uplifting visit, Mom and I felt that we might need to make a decision tomorrow or Sunday.

Pastor Don stopped by around 1:45 P.M., and Mom and I had a very emotional visit with him. I just couldn’t believe that this was happening, and Don said that it was OK for me to be mad at God. I was mad, frustrated, and heartsick, but I don’t think that I reached the point of being mad at God. Among other things, Don asked us if we had considered hospice. I wasn’t sure whether hospice care was available at the hospital or some other location. At that point, I hadn’t considered anything, and I wasn’t ready to think about it.

Shortly after Don left us, I walked over to the north tower to visit with some of the CTICU nurses. I found a couple of our favorite nurses and provided them with a brief update on Dad’s status. When I returned to Dad’s room, I learned that Andrea had been able to wean Dad off of two of the five vasopressors, and his blood pressure seemed to be stable. This was the first good news since Dad’s return to Memorial, and I could feel myself exhale. I said a silent prayer that we could wean Dad off the remaining vasopressors before he lost any extremities.

Later in the day, Pastor Don stopped by again with his wife, Wynn. Mom had met her two nights earlier, but this was the first time that I had met her. I found her to be delightful and I was pleased to learn that she worked in the chaplain’s office at the hospital.

Vasopressors increase blood pressure by constricting the blood vessels. This constricting of blood vessels is particularly acute in the extremities and in situations like Dad’s, toes and fingers sacrifice blood flow for the benefit of the vital organs. Andrea tried to find Dad’s pulse in his feet with her hands, but couldn’t. She eventually was able to find a pulse in both feet with a Doppler ultrasound. The relief among those of us in the room was palpable when we heard the sound of blood flow.

Mom and I went home for dinner and returned to the hospital at 7:15 P.M. Charlie, the respiratory therapist, had just finished Dad’s trach and oral care and ventilator maintenance. Dad was still on three vasopressors. Mom and I met Donna, the night nurse, before leaving for the night. She told us that Dad had additional blood draw after dialysis and that his WBC count was now 22.7, up another 4 points from this morning. His WBC count hadn’t increased at this rate since his first aspiration episode in May.

I should have been encouraged that Dad had survived another day, but I was concerned about Dad’s worsening responsiveness. I couldn’t stand the thought of losing him without being able to communicate with him one last time. I had mentioned to Andrea that I wanted to talk with a respiratory therapist to see if there was a way in which we could communicate with him.

July 25, 2015. Mom and I arrived at Dad’s room at 7:15 A.M. We were pleased to see Andrea again, but nurses work only three days each week, so we knew this was our last day with her. Dad’s WBC count was now 19.2, down slightly from yesterday afternoon, his hemoglobin was down, and his acidosis condition had improved to the point that he was now slightly alkaline. Dad had been receiving a bicarbonate drip, which they now decided to stop. The vasopressors were still affecting the blood flow in Dad’s feet. We held our breath again as we watched Andrea struggle to find a pulse with the Doppler ultrasound.

Dad was sleeping a lot, and Andrea said that he was not responding to commands, but he opened his eyes for her. He opened his eyes for me, too, but I couldn’t get him to squeeze my hand.

Charris, one of the residents assigned to Dad, told us that when Dad arrived a couple of days ago, they performed a mini bronchoscopy on him to take some cultures from his lungs. They now knew that in addition to the aspiration pneumonia, he also had an infection (pseudomonas) in his lungs. Severe cases of pseudomonas generally occur in people who are already hospitalized with another illness or condition, or people who have a weak immune system. It seemed that everything that ailed Dad now was hospital acquired.

Dr. Pan, the nephrology resident, stopped by and told us that because Dad was not very acidosic and didn’t seem to have much extra fluid, they would not dialyze him today. He said that the nephrology team would assess Dad on a daily basis to determine whether to dialyze.

Dr. White stopped by during rounds at 8:00 A.M. He agreed that we’d seen a slight improvement in Dad since yesterday–probably due to the dialysis. He was able to feel the pulse in Dad’s feet with his hand, and he said that Dad’s feet looked better than they did yesterday. I knew that I shouldn’t have been so concerned about his toes when his life was at stake, but I was relieved that the pulse in Dad’s feet was getting stronger as they weaned him off of the vasopressors.

Now that Dad was back on the ventilator, he couldn’t talk. I got some wild idea yesterday that I had to give Dad a chance to communicate with us if he was going to die. Andrea said that she would contact the respiratory therapist to see if it would be possible to enable him to talk. The respiratory therapist contacted Svenja, the Trach Goddess of Scott & White. We hadn’t seen her since June, when she first changed Dad’s trach. When she heard about Dad’s condition and our desire to communicate with him, she agreed to give it a try. Unfortunately, all of her efforts failed to work, and we probably sapped some of Dad’s strength. The exercise woke him up for a couple of minutes, but he fell asleep almost immediately when Svenja reinflated his trach collar.

When Mom and I returned from a lunch break, we found that Dad was still asleep and impossible to rouse. Most of his vitals were still good, but Andrea told us that his platelet count had dropped, and he needed a platelet transfusion. We sat in the room with Dad for a few more hours and finally went home for dinner. It was difficult to stay in the room with him in his current condition, but it felt worse to leave him. Although his vitals were stable, his condition was still grave, and the failed attempt to communicate with him had wilted my already sagging spirits.

We returned to the hospital at 7:00 P.M., in time to meet Tyler, the night nurse. Mom and I liked him immediately, and he seemed intent on weaning Dad off of the vasopressors. While talking with the nurse, the respiratory therapist, also named Tyler, attended to Dad’s trach, the ventilator, and Dad’s oral care.

Before we left for the night, Tyler put some lotion and booties on Dad’s feet to help with his peeling and cold feet. Tyler told us that he would be working for four nights that week, and we really hoped that he would be assigned to Dad. When Mom and I left for home at 8:30 P.M., we felt a small sense of optimism that Dad would have a good night, and maybe we would too.

Slipping back into Hell

Published on October 4, 2016 by mellowdee552 Comments

July 23, 2015. Dr. Anderson called me at 5:30 A.M. and told me that they still were unable to raise Dad’s blood pressure. His EKG had changed and the doctor suspected that Dad had suffered a heart attack. The doctor wanted to know how aggressive we wanted to be in his treatment. They were limited with what they could do at the CCH, and if they kept doing what they were doing, Dad would die in one to two hours. They might be able to help him at the main hospital (Memorial), but with his age and current situation, Dr. Anderson recommended that we think about how much more we should so. I woke Mom to confer with her, and she wanted to do everything possible. I called Dr. Anderson back with our decision, and he said that Dad would be at Memorial in about an hour. Considering that he projected one to two hours for my father to live, the hour-long trip to the other hospital made me a little nervous.

hell2 When I got off the telephone with Dr. Anderson, I texted Pastor Don and my husband about Dad’s situation. Mom and I got dressed and headed to Memorial. We didn’t know where to go, so we headed to what we knew: the Cardiothoracic Intensive Care Unit (CTICU) nurses station in the north tower of the hospital. We arrived at 5:50 A.M., and it occurred to me that we arrived at the same time on May 6 for Dad’s original surgery. We asked the CTICU nurses about Dad’s whereabouts, but either he had not arrived, or he was not yet in their system.

While at the CTICU nurses station, we saw a couple of nurses and respiratory therapists that we knew, and they showed us to the Medical ICU (MICU) waiting room in the south tower. While we were waiting, personnel from the day shift started arriving. As Kelli, one of the charge nurses from CTICU, walked through, she was startled to see us. We quickly apprised her of Dad’s condition, and she hurried off to see what she could learn about his whereabouts.

At 8:00 A.M., we were still sitting in the MICU waiting room, waiting to learn more about Dad’s condition and see him. We saw Jordan, a PA, and Dr. Sai, both of whom said that they would check on Dad and get back to us. When we were finally called to Dad’s room, we were met by Dr. Sanchez, who was the presiding physician that week. He said that Dad was stable, but his condition was grave and the doctor didn’t think that Dad would survive. He said that they would know more in 48 hours. I was so anxious for anything positive, the fact that he even mentioned a time beyond today seemed like good news.

hell2b Evidently, when Dad arrived from the CCH, he was on three vasopressors and his MAP was in the 40s, which is way below minimum. Now, he was receiving more than the maximum dosage of five vasopressors to keep his blood pressure at a MAP of 65, which is a minimum level. When asked by Dr. Sanchez about the extent to which we would go, we said that we wanted to do everything possible, stopping short of restarting his heart, should it stop.

Our first couple of hours in Dad’s room were like a tragic welcome-home event. Addison, one of Dad’s speech therapists, stopped by to say “hello.” Adan from the CCH had called her and told her about Dad’s episode. Dr. Velazco, another of the physicians who rotates through the ICU, stopped by. He still wore scrubs from surgery and was very upset about Dad. Occasionally, we were asked to leave Dad’s room, and during those times I kept encountering nurses and therapists from his earlier stay at Memorial. They were all shocked and generous with their supporting hugs.

After Dr. Sanchez and his entourage left, we got to know Tina and Andrea, the two nurses assigned to Dad. I really liked them and the way in which they cared for Dad. For all intents and purposes, the doctors had told us that Dad was a lost cause, but you wouldn’t know it from these two women. I also came to depend on Charis, a resident who was assigned to Dad. Lynette, the case manager, was also very attentive and told us to contact her if we needed anything. I suspect that she thought that Mom and I would need her assistance when Dad died.

hell2c Throughout Dad’s stay in the Scott & White system, I had developed a steely resolve to stay positive and to keep my parents positive. The last six hours had severely cracked my armor. When Charis first entered the room to talk with us about Dad and how the doctors were expecting his death, I sort of lost it. While fighting back tears, I started telling her that what I was feeling was like Orpheus watching Eurydice slipping back into Hell. The only light moment of the day came when my mother commented about the startled look on Charis’ face when I interjected Greek mythology into her briefing.

As the day progressed, Dad’s condition seemed to worsen. The doctors continued to administer broad-spectrum antibiotics. Only 24 hours earlier, his WBC count was 5.6. It was now approaching 13 and he was non-responsive to pain. In addition, he had developed septic shock, severe acidosis, and his liver was in shock. The doctors thought that putting him back on dialysis might help with the acidotic condition. Shortly before noon, Carlos, the dialysis nurse, arrived and started the eight-hour dialysis session. Dad’s blood pressure dropped, so they stopped removing fluid.

Around 12:30 P.M., Dad seemed to recognize me. I took that opportunity to tell him that I had purchased an indoor skydiving session for my husband for his birthday. He made a face, which seemed like the response that I would have expected from him. Around 1:00 P.M., Andrea was able to get him to squeeze her hand. She also touched some gauze to his eyes to see if he would react. Bases on his responses, Andrea thought that, neurologically, he was doing better. He had not reacted to any type of stimuli, including pain, when he was admitted.

hell2d When Mom and I went to lunch, we stopped by the CCH to pick up Dad’s belongings and flowers. Live flowers are not allowed in the ICU at Memorial. When we returned to Memorial around 2:30 P.M., he was wrapped in a Bair Hugger (heating blanket). His core temperature was now too low, partly because of the dialysis, and they needed to raise it.

During the remainder of the day, a variety of therapists and specialists stopped by to take blood and administer trach care and oral care.

As news of my father’s return spread through the ICU, more nurses stopped by his room. One unexpected visitor was Peggy, a hospital employee who monitored central (PICC) lines. She stopped by the room because she recognized us. We chatted a few minutes, and Mom and I quickly learned that she was not a fan of the CCH. She encouraged us to contact Patient Relations about the CCH and our experiences there.

Mom and I went back to the house for a late dinner break and didn’t return to the hospital until 8:00 P.M. We didn’t plan to stay long, but felt that we needed to meet his night nurse, Rebecca. Dad was off dialysis and his blood pressure was up, but it dropped sharply when Rebecca tried to start weaning him off of the vasopressors. She decided that she would probably keep the levels the same during the remainder of her shift, which would end at 7:00 A.M. When I asked her about the results of his ABG tests earlier that day, she said that his pH levels were still “out of whack,” which was disappointing news. We had hoped that the dialysis treatment would have improved his acidotic condition. Before Mom and I left for the night, we visited with Charlie, the respiratory therapist, while he administered trach care and an oral treatment. We stayed until about 8:30 P.M.

I don’t recall what we did when we returned home, but after the day that we had just endured, I suspect that a glass of wine was involved.

And the nightmare begins again

Published on September 27, 2016 by mellowdee553 Comments

sky Wednesday, July 22, 2015: 3:45 P.M. I had just left a meeting at work and listened to the voicemail that my mother left 40 minutes earlier. “Melody, it’s Mom. I’m at the hospital with Dad and he’s not doing too well. He had a bad coughing spell during dialysis and they’re trying to bring his blood pressure down, but he’s got the shakes and delusions and all kinds of stuff. Call me on my cell, because I’m not going to leave him. Talk to you later. Bye-bye.”

A tingly feeling crept up my neck and face, and I hoped that she was overreacting.

Earlier that day, Dad was wheeled to the dialysis room on the second floor of the CCH. His WBC count had been holding steady at 5.6, but his creatinine level was still elevated. His stubborn creatinine levels prompted his nephrologist to predict that Dad was likely to remain dialysis dependent, news that we didn’t want to hear. During his morning rounds, Dr. Anderson found Dad to be awake and alert and said that his vitals were good.

At 10:30 A.M. Dad starting coughing hard during dialysis and couldn’t seem to stop. His condition seemed to worsen immediately. Dialysis was stopped and Dad was returned to his room. Dad’s oxygen saturation levels bounced between 75% and 90%. He was coughing and suctioning large amounts thin, clear looking secretions. Michelle, Dad’s nurse, said that he was alert and had a productive cough, but it was obvious to her that Dad was in distress. The respiratory therapist was summoned to Dad’s room. She removed the red cap from Dad’s trach tube and placed him on BIPAP with 40% oxygen—a big medical and psychological step backward.

Rachel, the nurse practitioner was called to Dad’s room to evaluate his condition, and she thought that his cough appeared to be calming down. Shortly thereafter, the nurse notified Dr. Anderson that Dad’s heart rate had elevated to 150. In addition, his clear-looking secretions changed and now appeared to be Nepro. His tube feed had been stopped in dialysis when he started coughing, so they were now certain that he had aspirated his tube feed during his coughing jag. Nepro in the lungs pretty much triggers pneumonia immediately. This would be the second time that he had had pneumonia in less than three months.

On dialysis days, Mom usually arrived at the CCH around 11:30 A.M., about 10 minutes before she anticipated Dad’s return to his room. When she arrived today, she was startled to see that not only was Dad already there, the room was also teaming with activity. Michelle briefly apprised Mom about what had happened, but Mom didn’t get the impression that Dad’s condition was dire. She watched the nurses administer some meds, prop up Dad in bed, and leave the room. From what Mom could tell, it didn’t seem like the meds or the upright position did anything to improve his situation.

A short time later, Dr. Anderson told Mom that they would move Dad to a larger room next to the nurses’ station so that they could more closely monitor and attend to him. After they moved him, Mom sat in his room, watching the constant flow of nurses while they injected one medicine after another into his IV. Several times she was asked to leave his room, although she didn’t always know why.

After sitting in Dad’s room for a couple of hours, Mom called her friend Marilyn. Being the good friend that she is, Marilyn dropped everything and went to the CCH to sit with my mother. Shortly after Marilyn arrived, my mother called me and left the ominous message on my voicemail. When I returned her call at 3:45 P.M., she was very concerned, and although they had just moved Dad from BIPAP to full ventilation, she was still not convinced that I should drive to Temple before the weekend.

Marilyn and Mom sat together in Dad’s room for a couple of hours. During that time, Dad’s condition had not improved and Mom became worried. To her, it seemed like they kept trying medications but to no avail. As Marilyn and my mother talked, Marilyn asked Mom if she should call Pastor Don, but Mom didn’t know how to contact him. Marilyn was pretty active in another United Methodist Church. She didn’t have Don’s contact information, but she knew someone who did.

Pastor Don’s mobile phone rang just as he and his wife, Wynn, started eating dinner at a local restaurant. Don promised to stop by the CCH as soon as they finished dinner. Mom called me again at 5:30 P.M., and said that she wanted me to come to Temple that night. Stan had come home for dinner and was about to return to his office for the night. His birthday was becoming memorable, but not for the reasons we wanted. I had already packed a bag in anticipation of Mom’s call, but decided to wait a couple of hours before leaving. Anyone familiar with U.S. 290 would understand why I didn’t want to brave that highway until after 7:00 P.M. I said good-bye to Stan, and he said that he’d come up to Temple in a couple of days.

Between Mom’s call to me and when I left Houston, Pastor Don and Wynn arrived at the CCH. Mom and Don spent some time together in the small chapel at the CCH, and Mom said that Don was wonderful and encouraging. Finally, at 9:30 P.M., Mom, Marilyn, Don, and Wynn left the CCH.

My drive west on U.S. 290 was a little surreal. The sunset was a spectacular display of stunning shades of orange. I was torn between appreciating the beauty of nature and praying that my father wouldn’t die on my husband’s birthday. I arrived at the CCH around 10:00 P.M., and made my way to Dad’s room. When I arrived, he was fully ventilated and surrounded by ice and fans in an attempt to bring down his temperature. I was met by his night nurse, Christine. She had arrived at 7:00 P.M., and was stunned by his sudden change. She told me that he had been doing pretty well, and she really enjoyed joking around with him during her shift. He had never spoken about her to me, but he’s a big kidder and it seemed like they had developed a friendly banter.

I went to his bedside and held his hand, but he didn’t know that I was there. Christine asked me under what circumstances I would want to be called during the night. I told her to consider her own father and the circumstances under which she would want to receive a call, and then I left. I had called my mother when I arrived at the CCH and she was waiting for me to arrive at the house. We were both exhausted, yet keyed up on nervous energy. We talked for a while before going to bed.

At 3:30 A.M., the phone rang and it was Michael, a nurse from the CCH. He mumbled something about how they were adjusting Dad’s medication. I listened for a moment, said “OK,” and then hung up. After the call, I wasn’t really sure why he had called. It was unsettling and confusing. I wished that I had been more alert. I learned later that he had called to tell me that my father’s condition had worsened and that Dad required additional medication and that they were going to insert an arterial line so that they could monitor his blood gases. He had probably told me that in some jargon that I couldn’t understand—especially at 3:30 A.M. Scarier still was that this phone call was to obtain consent for the procedure. About an hour later, Dad’s blood pressure dropped to 65/39, his respiration was 35, his extremities were cold, and he still had a slight fever. With full ventilation, his oxygen saturation was only 90%.

At 5:30 A.M., the phone rang again. This time it was Dr. Anderson. He told me that my father wasn’t doing well, and among a list of problems, he was pretty sure that Dad had had a heart attack during the night. He then said that they could keep on doing what they had been doing, and my father would probably die in 1-2 hours, or they could send him over to Memorial. Dr. Anderson went on to say that considering my father’s age and “extremely poor prognosis,” he assumed that we would not want to take “aggressive measures.”

God help me; I took a deep breath, and in that moment I flashed back to several conversations I had had with Dad in which he listed conditions in which he would not want to live or treatments that he would not want to endure. I told the doctor that I would call him back in a couple of minutes. I then woke my mother with the news from Dr. Anderson. I was relieved when she said, “We have to do whatever we can to help Daddy.” I immediately called the CCH and told Dr. Anderson to send my father to Memorial. He hesitated for a moment and said OK, but it sounded more like a question than an affirmation.

At 6:15 A.M., my father was moved to a stretcher and transported back to Scott & White Memorial to MICU. Following Dr. Anderson’s call, the clock seemed like our biggest enemy.

Things were going great, until they weren’t.

Published on September 20, 2016 by mellowdee55Leave a comment

July 16. Dad was seen by the infectious diseases specialist, who (like Dr. Smith) wanted to take Dad off of the IV antibiotic. The lower strength of doxycycline, compared with the IV antibiotic he was taking, should help improve his kidney function. Antibiotics are tough on your system and can affect kidney function. Not surprisingly, when the doctor visited with him, Dad told him that he wanted to go home.

As promised yesterday, Adan stopped by with some thickened chicken soup for Dad to try. Dad wasn’t wild about the consistency of the soup, but Adan was encouraged that Dad was swallowing the soup without aspirating it.

flower1 Jennifer from PT arrived and Dad was ready to exercise. He immediately asked about her plans for him, and Mom wanted to know what he could do over the weekend. She didn’t want him “just lying in bed.” Although my parents were resigned to the fact that my father had to remain hospitalized until August 26, they didn’t want to stay there one day longer than absolutely necessary. Jennifer showed them a variety of exercises that Dad could do, and she encouraged him to sit in the chair at least twice a day over the weekend. Although he started out pretty unsteady, Dad was able to walk with assistance for about 250 feet. Jennifer was encouraged about how his mobility kept improving during their sessions.

July 17. The bad news was that it was Friday and Dad was scheduled for dialysis. The good news was that he’d have a two-day reprieve when today’s session was finished. Because it was dialysis day, he also had blood drawn. His lab results were very good. His WBC count was 6.5, his hemoglobin was 9.4, and his creatinine was 3.61. The hemoglobin and creatinine numbers weren’t good for the average person, but they were an improvement for him. They removed 2,877 ml of fluid, which was a significant increase over Wednesday. Although he was tired, he was still able to participate in some activities later that day.

Unfortunately, all of his physical therapy led Dad to believe that he could get out of bed by himself. He was reminded again by the nurse that if he needed anything, he should use the call button to request assistance.

Adan stopped by with some thickened tomato soup for Dad. It tasted as dreadful as it sounded, but he was able to swallow it. Adan was now cautiously optimistic about Dad’s prognosis. Mom and I were thinking ahead to Stan’s birthday the following week, and she asked Adan if he thought that Dad could eat a Jell-O cake (Don’t knock it until you’ve tried it.). Unfortunately, he said that the Jell-O was very slick and would be difficult to swallow. I was bummed. I had really hoped that we could have some sort of cake next week.

July 18. It was Saturday and the first weekend since May 15 that I stayed at home in Houston. When Mom arrived at the CCH, Dad was awake, but he said that he wasn’t feeling very well. He slept for another hour and felt better when he woke. Mom noticed that his feet stuck out of the bed when he slept. At 6’1”, Dad was taller that the hospital beds were long. According to the nurses, the beds were designed for 5’10” adults. Although she had asked before, Mom asked the nurse if she could find a bed extension for Dad’s bed. After searching for quite some time, she finally discovered an extension in the room across the hall, which had been occupied by a short woman. The extra foot enabled Dad to sleep with his feet under the covers.

sunflower The nurse started a new IV, but they had no plans to remove Dad’s PICC line until Sunday or Monday. I had sent Dad more flowers, and he surprised me by calling me at home to thank me for them. Although he was disappointed about how weak he had become and his extended stay, his attitude seemed to be getting more positive, and he was working hard to gain back the strength that he’d need to leave.

July 19. At 3:15 A.M., the night nurse woke Dad so that she could reposition him in the bed. When he objected, she reminded him about the importance of frequent position changes to prevent ulcers and to promote healing. He informed her that he didn’t need any help turning himself in bed and added that he did not want to be awakened during the night to turn. As you might expect, she asked him to show her, and he was able to fully turn on each side. She reinforced the importance of him turning, and then she left.

Rebecca, the day nurse, had a similar exchange with Dad when she reminded him that he had to turn himself in the bed every two hours.

When Dr. Ciceri saw Dad during morning rounds, he found Dad to be in good spirits and very conversant. If it wasn’t for the danged kidneys, you’d think that he’d be about ready to go home. It was now 75 days since Dad’s surgery. It had also been two days since dialysis, and Dad was feeling pretty good. With Mom’s help, he did lots of bed exercises and walked all over the CCH in his wheelchair.

July 20. It was Monday again, which meant a new doctor and more dialysis. Unfortunately, Dr. Douglas Anderson, our “favorite” doctor, was back. Before his 7:00 A.M. dialysis appointment, Dad was reminded once again that he had to use the call button and could not get out of bed without assistance. Dad’s pre-dialysis lab results were mixed. His WBC count was down to 5.4 but his creatinine level was up to 4.73, higher than they had been in weeks. Dad’s pre-dialysis weight was taken from the scale that is built into the bed. The down side of that nifty bed extension was that it added to the weight of the bed. According to the bed scale, which wasn’t recalibrated for the extra weight of the extension, he had gained 4.6 kg since Friday, which was highly unlikely. The dialysis nurse guestimated that he had gained 2.2 kg (5.5 pounds), and removed 2,872 ml.

Dad was pretty tired after dialysis—too tired to participate in swallowing trials with Adan. Adan said that he would follow up with Dad on Tuesday for a trial meal, and possibly diet advancement. That news from Adan was pretty promising, but even better than that was the news that Mom received from her neurologist. According to her latest MRI, Mom’s brain showed no signs of impairment from her stroke in May.

July 21. Dad’s day started out pretty well and he was in good spirits. Adan stopped by in the early afternoon and had Dad try eating some thickened chicken soup. He thought that Dad had made good progress in the past few days and would bring Dad a tray on Wednesday or Thursday.

Shortly after Adan left, Jennifer arrived for his physical therapy session. During his sit-stands on the edge of the bed, his heart rate increased to 140. Jennifer was a little alarmed, but the nurse told her that increases like this weren’t uncommon for Dad. Because he was a little dizzy and off balance, he required some assistance when he walked. His balance improved the more that he walked, but he required at least minimal assistance during the session. As she had done on previous visits, Jennifer ended the session by having Dad sit in the chair. All in all, Jennifer felt that he was progressing toward his goals.

A couple of hours after Jennifer left, Christopher, the occupational therapist, arrived to formulate goals with my parents. The occupational therapist had been monitoring Dad’s progress with physical therapy and felt that Dad was ready for OT intervention.

July 22. It was hump day for most people but dialysis day for Dad. It was also my husband’s birthday. Although Stan’s day would be better than Dad’s, he was scheduled to work during the day and then all night. As compensation for working 20 hours, Stan would get the day off on Friday, enabling us to get an early start to our weekend in Temple where we would celebrate Stan’s birthday with my parents.

When Dad arrived at the dialysis department, the dialysis nurse noticed that his lung capacity was somewhat diminished with crackles to the bases, although she said that his cough was productive. His WBC count was sitting at 5.6, so I wasn’t too worried about infection, although I wondered if the doxycycline was addressing the infection in his lung. His creatinine level was down slightly, but not nearly as low as it had been last week.

At 3:05 P.M., I was at the office in Houston and attending a meeting with Patrick and Michele, a couple of my coworkers. Whenever I was in Houston, I kept my mobile phone close by in case my mother happened to call. To date, all of my phone conversations with her were initiated by me. At this moment, my phone rang and my mother’s name appeared on the caller ID. I couldn’t take the call, but noticed that she left a message. I was able to end the meeting a little early, and then listened to the following message: “Melody, it’s Mom. I’m at the hospital with Dad and he’s not doing too well. He had a bad coughing spell during dialysis and they’re trying to bring his blood pressure down, but he’s got the shakes and delusions and all kinds of stuff. Call me on my cell, because I’m not going to leave him. Talk to you later. Bye-bye.”

Dang.

Just. Want. To. Go. Home.

Published on September 13, 2016 by mellowdee552 Comments

July 12, 2015. Stan arrived at my parents’ home at 9:00 A.M. from Houston, and Mom and I left for the CCH shortly after his arrival. Before Mom and I left the CCH for church, the respiratory therapist stopped by and replaced Dad’s speaking valve with a red cap. Oh my gosh! It was almost like having no trach tube. He breathed normally and he sounded more like his usual self. Dad’s ability to remove his own secretions with the Yaunker would determine when they could decannulate him. If Dad could not handle his secretions, the respiratory therapists would have to remove the red cap and suction him. While we were there, Dr. Smith stopped by and asked if Dad had been in the chair. I just hated knowing that our week with this doctor was about to end.

Stan visited with Dad at the CCH while Mom and I attended church, and then he stayed for another couple of hours while Dad sat in the chair. I was encouraged when Stan told me that Dad did most of the transfer from his bed to the chair, and once he was in the chair, his coughing stopped.

Later in that day, Cassie, the nurse, mentioned that Dr. Smith was considering switching Dad from intravenous to oral antibiotics. Among other things, the oral antibiotics were less harsh on the kidneys. Because Dad could not swallow pills, the oral antibiotics would be crushed and administered through his feeding tube.

For the past few weeks, Mom and I had been unable to unlock the front door with the house key. Stan had sprayed graphite into the lock and that remedy had worked for a couple of weeks, but we were now back to square one. We didn’t have the time or inclination to fix it, so we just accessed the house from other doors. The front door lock was just an example of life’s little inconveniences that didn’t seem all that important at the time.

July 13. It was Monday, which meant that a new doctor started the week-long rotation, and Dad was scheduled for another 4-5 hours of dialysis. On the positive side, Dad was gaining less weight between dialysis sessions, which meant that they would remove less fluid from his blood. Today they removed only 1,497 ml, far less than the 4,000 ml or more removed only a week or so earlier. The nephrology personnel were cautiously optimistic that his kidneys might be perking up. What they actually said was that they “would watch him closely for a possible sign of recovery.” Dad’s labs that day were a little contradictory. Although his creatinine levels had improved slightly, his WBC count had inched up. It was still well within the normal range, but this was the first uptick that we’d seen in the WBC count in a couple of weeks. Dr. Ciceri, the new doctor, mentioned that Dad seemed to be in good spirits and that he was very conversant. Perhaps I worried too much.

My parents live down the street from Bob Probe, an orthopedic surgeon with Baylor Scott & White, who was now chief of staff for Scott & White Clinic. This morning, while Dad was in dialysis, Mom and I visited with Dr. Probe and expressed some of our concerns about recent events. In particular, we wanted to tell him about my mother’s experiences at the hospital—specifically, her admittance to Scott & White Hospital as Trauma Patient Ohio. We also told him about my difficulty calling 911. Although he had no authority over the 911 system, he had many contacts who he said he would contact. We also shared some of the challenges that we had had with Dad’s care. In our experience with the hospital, we had learned that it was the patients’ responsibility to understand what was happening. We had seen firsthand that the doctors didn’t ensure that the patient could hear or understand what was being said. You’d have to pity the poor person who was admitted without a support system or advocate. As someone who is concerned about new-user experiences, I told him that to navigate the system, new patients and their families needed more information about resources, and perhaps the case managers could come around more often. From what Mom and I could surmise, the hospital personnel who filled this void were the chaplains, and some did it better than others. If the chaplains were the designated go-to resources, it would have been nice to know that on May 6. Dr. Probe said that he appreciated the perspective and the feedback. He took a lot of notes during our meeting, and Mom and I left the meeting under the impression that we would hear back from the good doctor. Spoiler alert: It’s been almost 14 months and we still haven’t heard from him, but hope springs eternal. He might have bigger fish to fry. Since our meeting, Dr. Probe was promoted to Chief Medical Officer of the Baylor Scott & White system.

Following our visit with Dr. Probe, Mom and I went home for lunch. On my way back to Houston, I stopped by the hospital to say good-bye to Dad. He was dozing when I arrived, but woke easily and was pretty talkative. He looked pretty alert, and seemed to be feeling better than he had on most dialysis days. Mom arrived shortly before I left at 2:00 P.M. Soon after I left, Dad said that he was tired and had Mom leave for the day. When he was tired, he could fall asleep in midsentence. Later that evening, Mom tended to the garden and also gave it a good soaking. After all the rain just two months earlier, we were now suffering from a drought. Where rain was concerned, it was either feast or famine in central Texas.

July 14. Dad was alert and in good spirits when Dr. Ciceri visited him during morning rounds. Dad’s vitals were good, and it seemed like it was a perfect day to conduct the MBSS. The swallow study must be administered in the radiology department at Scott & White Memorial. Dad was ferried to the hospital in an ambulance and the test was administered by Holly, his speech therapist during his stay at Memorial. Unfortunately, the test that we had yearned for yielded some disappointing results. In short, he was diagnosed as a high risk for aspiration. They tested him with thin liquids, nectar and honey-thickened liquids, puree, and pudding. Even when swallowing with a chin tuck, he was not successfully swallowing anything but the pudding. Fortunately, Adan planned to continue working with him. The prospect of Dad not being able to eat again was unthinkable.

Dad was pretty tired by the time he returned from Memorial to his room at the CCH. Shortly after he arrived, Jennifer, the physical therapist, arrived for his session. He told her that he felt as though he had already been moving around all morning. Physical therapists tend to ignore such protests from patients, and she proceeded with therapy. Although Dad had some difficulty standing from a chair and the side of the bed, he was able to complete all the repetitions of his exercises and walked a few steps. He did much better when he “walked” in the wheelchair. When she was finished with their session, Jennifer left him in the chair, where he stayed for an hour. Mom was encouraged by all the therapy that he was receiving.

Mom stayed until 5:45 P.M. and was still there when our church friends, Kris and Sue, stopped by after work. They had stopped by once before, but didn’t know the password. I don’t remember ever being told about a password, and unless you visited after 8:00 P.M., the doors opened automatically. Sometimes this place was just weird.

Today seemed like a pretty good day for Dad. I would have felt better about it I hadn’t been so worried about his white blood cell count.

home July 15. During dialysis, Dad told the nephrologist that he wanted to go home. The doctor told him that to be declared dialysis dependent (with End Stage Renal Disease), he had to be hospitalized and on dialysis for a total of 12 weeks. Although Mom and I had heard this news a few days ago, it was new news for Dad and prompted him to start asking questions about billing. The doctor contacted Marty Edens, the social worker, who dropped by to answer his questions. Marty couldn’t answer his specific billing questions, but she was familiar with Medicare and some of Dad’s situation. Dad told Marty that he “can’t imagine being here for six more weeks.” He repeatedly told her that he “made a wrong decision two months ago that put him where he was now.” I was glad that I missed this heartbreaking conversation and the follow-up discussion that Marty had with my parents later that day. My mother then requested a plan for his discharge. Marty told them that she could not give them a time frame regarding recovery, other than that if he continued to need dialysis, he would remain at the CCH until at least August 26, or until the doctors said he didn’t need dialysis, or they declared him to be dialysis dependent.

My exasperated parents then asked her when Adan would be able to come by. They both found some comfort and sense of progress in therapy sessions, especially speech therapy sessions with Adan. Adan stop by, had Dad eat some ice chips, and said that he would stop by tomorrow with some thickened soup for Dad to try.

Jennifer then arrived for their physical therapy session, but Dad was too tired after dialysis to exercise. Before she left, Jennifer said that Dad was now ready for sessions with occupational therapy. They had withheld occupational therapy until he was a little stronger and no longer dependent on oxygen. The occupational therapist judged his prognosis to be fair, based on what he had read in Dad’s chart. His prognosis for just about everything was fair. I was getting tired of this “F” word.

Although Dad’s lab work and his vitals were holding tight, Dr. Ciceri thought that Dad might be somewhat confused, which can be a side-effect of prolonged hospitalization. On a more positive note, during Dad’s dialysis session, only 1,194 ml of fluid was removed, which was considerably less than earlier amounts and left him less fatigued. With Dad’s extra energy, he continually told nurses, doctors, and other providers that he “just wanted to go home.” Up until 71 days ago, my parents had been the poster adults for healthy seniors. They were active, engaged, and in control of their lives. Their current situation left them frustrated and just barely able to tolerate their current situation.

What a difference one person can make

Published on September 6, 2016September 6, 2016 by mellowdee551 Comment

July 5. On the way to church, Mom and I stopped by the hospital to visit with Dad and to try to get a moment of the good doctor’s time. Dr. Anderson didn’t seem to be a fan of the patients’ families, but we had told the nurse yesterday that we wanted to talk with him. Before the doctor graced us with his presence, Mom and I had a discussion with Dad about his inactivity. He seemed content to stay in bed, and we were just as determined to get him out of it.

When Dr. Anderson arrived, he remained in the threshold with his arms crossed high on his chest. Following the introductions, I asked him about Dad’s prognosis for getting a red cap on his trach. He said that they were monitoring Dad’s secretions and would attempt it as soon as possible. The conversation started to deteriorate when I asked him about Dad getting out of the bed and into the chair. He said that Dad was too weak to sit in the chair. When I challenged that proclamation, saying that all the doctors at Memorial wanted Dad in the chair every day, he still wouldn’t budge. He basically said that the Memorial doctors were wrong. When I asked about the frequency of Dad’s swallow therapy, he rolled his eyes and said that the (lemon swab) therapy that Dad had received at Memorial wouldn’t do any good. To make matters worse, Dad was satisfied that he didn’t have to get out of bed. The first word that popped into my head was warehousing, and Mom and I were incensed. They were not going to warehouse Dad.

While Mom and I were at church, many former and current health-care professionals asked us about Dad’s condition, and they all asked if he had been sitting in the chair. When we relayed our earlier conversation with Dr. Anderson, one of the parishioners encouraged us to put our concerns in writing and meet with the nurse manager and request a care plan for Dad. During the morning service, Pastor Don mentioned that Dad was one of his blessings. Don went on to say that Dad had been having a tough time, but he blessed Don every time Don visited with him. On the way back to my parents’ home after church, I stopped by the hospital to say goodbye to Dad before I went home to Houston. Before I left, I collected some information for Mom about the CCH from the CCH website. I wanted to ensure that she was adequately prepared for her meeting with the nurse manager. I also ensured that she was armed with an excerpt from the mission statement on their website.

cchPledge

July 6. Shortly after Mom arrived at the CCH, the case manager informed Mom that Dad would need to remain at the CCH until he had received dialysis for at least 90 days. Evidently, Medicare won’t consider a person dialysis-dependent until he has received at least 90 days of dialysis while hospitalized. What that really means is that they won’t pay for it. It also meant he couldn’t leave this place until August 26! It was difficult to believe that this policy was cost efficient, but who am I to question the U.S. government?

It was the first day of the doctor rotation, and a breath of fresh air, known as Dr. Randall Smith, blew into Dad’s room after dialysis. In addition to insisting that Dad get out of bed and into the chair, he actually spoke to Mom. A few people at the CCH would become important in our lives. Now that Dr. Smith had arrived, we had met three of them: Adan, Angela, and Dr. Smith.

Later that morning, Mom was able to see April Jones, the nurse manager. We don’t know if seeing her or having a different doctor made the difference in Dad’s care that week, but Mom’s mood improved significantly after their visit. We still can’t tell you what a care plan looks like, because we never saw one. Evidently, care plans are prepared every week and are part of the patient’s chart. Patients and their families are apprised on a need-to-know basis, or when something happens. We learned that our best bet was to form relationships with the therapists.

Adan, the speech therapist, visited with Dad and administered a bedside swallow test with water, ice chips, and lemon swabs. He also felt Dad’s neck muscles, and believed that Dad was swallowing. Instead of the original plan of one time a week, Adan would now try to meet with Dad three times each week. Although Dad’s progress was slow, Adan thought that he was progressing toward his goals.

Dad had dialysis today, but they removed only 2.8 liters, which was less than what they had been removing. His WBC count was inching down and was now at 8.5—another good sign of progress.

July 7. Dad started the day somewhat agitated and confused, but his mental status improved as the day progressed. When Jennifer from physical therapy arrived, Dad told her that he was “as weak as a kitten.” Following their session, Jennifer said that Dad’s strength was improving faster than he appeared to realize. She thought that he was making good progress with his transfers and standing, and that his activity tolerance had also improved. Could it be that all that physical activity improved his mood and mentation?

At the end of the physical therapy session, Jennifer left him in the chair, where he remained for an hour. Although Mom’s mood improved with Dad’s increased physical activity, she became a bit agitated with the “junk and bugs” on the floor. This wasn’t a new complaint. Conditions were pretty similar at Memorial, too.

Adan stopped by today with some thickened cranberry juice for Dad to swallow. Adan was going to see if he could get a MBSS test at Memorial next week. If Dad could pass the test, then he could start eating again.

July 8. It was dialysis day again. The nephrologist thought that Dad looked euvolemic—or normal—so they would not need to remove as much fluid. However, because he became hypotensive during dialysis, they had to stop fluid removal. In the end, they removed less than 2 liters.

We also received mixed news about his lab results. Although his WBC count was down to 7.7 and his hemoglobin was staying put at 8.5, his creatinine levels still exceeded 4.0—significantly higher than normal range of 0.6—1.2.

One of the daily routines occurred between the nurse (every nurse) and my Dad. Every day, multiple times each day, my father complained about being repositioned in the bed. This interruption occurred every two hours that he remained in bed (another good reason to get in the chair). Every time that my father complained, the nurse recited the importance of turns to prevent skin breakdown. He could be a challenge sometimes.

July 9. Dr. Smith said that in terms of his respiratory status, Dad was doing well. Unfortunately, he still had too many secretions to have his trach tube red-capped. He also said that, although it was still elevated, Dad’s creatinine levels seemed to be dropping. He wasn’t going to make any predictions but thought that Dad might be having some recovery of his kidney function. Wouldn’t that be great!

Jennifer from physical therapy was pretty optimistic, too. She noted that Dad was able to pull himself up and reposition himself in bed with little or no assistance. Mom was pretty excited about Dad’s physical therapy session. He walked in the hall that day with the assistance of a walker. Following therapy, he sat in the chair again for an hour. Dad’s swallow therapy was progressing too, albeit much slower.

Following an afternoon of flying endorphins from all of Dad’s physical activity, their friend, Marilyn, stopped by for a short visit. When Mom got home that evening, she picked some cantaloupes and tomatoes from my parents’ killer garden. Dad had missed the garden-fresh cucumbers; maybe he’d be home in time to enjoy fresh-picked melons from their garden.

July 10. It was Friday, and dialysis day. The lab results were encouraging. All of his levels had improved since Wednesday. His hemoglobin was up, his WBC count was down to 7.4, and his creatinine finally fell below 4.0. I arrived from Houston shortly after 3:30 P.M. After a week of good news, I was eager to see him again. Unfortunately, he was still pretty tired and disoriented from his dialysis session. At 4:15 P.M., he asked us to leave for the day.

Mom and I decided to take advantage of our free time and worked in the garden. We picked about three dozen figs; I picked 13 tomatoes, five cantaloupes, and one cucumber. I thought that I had pulled up all the cucumber plants, but one escaped me and the cucumber was about the size of a melon.

July 11. Mom and I arrived at the CCH at 9:25 A.M., in time to see a whirlwind of activity around Dad. Evidently, his feeding tube was clogged again and the nurse’s aide was trying to clear it. When Dr. Smith arrived, the small room seemed filled to capacity. In addition to some of the typical daily goals, like the requirement to get out of bed and into the chair, he announced that he wanted to see if they could remove Dad’s central line. Central lines and dialysis catheters are like infection highways with exits into your heart and brain, among other vital organs. The doctor thought that Dad was improving to the point that he could have the central line removed and replaced with an IV for the administration of his meds. I had some mixed feelings about this. IVs don’t stay in for long periods, which meant more sticks, and he was a poor stickee. I inhaled, but kept my thoughts to myself. I didn’t know what Dad thought, but I inherited his challenging veins and wondered if we shared similar anxious thoughts. The tech was able to hit a vein on the first try, which was practically a miracle.

Although Dad’s creatinine levels were improving, his kidneys weren’t giving up nearly enough fluid. In a two-day period, they needed to release about 2 liters. What they didn’t give up was pulled off during dialysis. If only you could give your kidneys a pep talk.

Dr. Smith thought that Dad was still a few days away from having his trach tube red-capped. Dad still had some infection in his lungs and he was still coughing up a lot of secretions. Later in the day, the respiratory therapist suggested that Dad might get his red cap on Monday or Tuesday.

When Mom and I returned after lunch, Dad had a new feeding tube, but it was somewhat uncomfortable. The tube has a very small diameter and is very flexible. It contains a thin wire to aid insertion and which appears on x-rays, which in turn are used to ensure that the tube is properly positioned. After the doctor finally had had the opportunity to review the x-ray of the positioning of Dad’s new tube, the nurse removed the wire, which improved the comfort level. Then the nurse restarted the Nepro tube feed.

As sick as Dad still was, the little things seemed to really annoy him, which I guess I should have taken as a good sign. He absolutely detested the oral care treatments that he received several times during the day. He thought that the mouthwash was the vilest thing he had ever tasted and asked the respiratory therapist, “which gas station they visited to find that stuff.” Considering that he used the original Listerine at home that was really saying something about the taste. His oral care was important, so I didn’t respond to his complaints. I was more concerned when he complained a couple of times that his IV site was painful.

Before Mom and I left for the day, Dad told Mom to be sure to give the neighbors some of our cantaloupes. Mom said that she had planned to give them away and would start with our neighbors to the north after we got home.

Mom was really struggling from the over-cooled building and had me stop on the way home for throat lozenges. We also picked up a birthday card for one of my cousins. My Dad had been mailing birthday cards to his nieces, nephews, and their children. As the last of his generation, he wanted to maintain the connection with the younger generation of Lockes. Mom and I hoped that he’d be home in time to sign and mail the October birthday cards.

Our first full week at the CCH

Published on August 30, 2016 by mellowdee55Leave a comment

June 28, 2015. Mom and I arrived at the Scott &White Continuing Care Hospital (CCH) at 9:05 A.M. Dad was still sleeping. We woke him and had Rebecca, the nurse, replace his speaking valve. As soon as he could talk, Dad started complaining about being awakened during the night for breathing treatments. When Dr. White stopped by, Dad complained again about being awakened, and Dr. White changed Dad’s orders so that he would not be awakened during the night for breathing treatments unless absolutely necessary. Today is Dr. White’s last day here for a month or so. Although we liked him, we hoped that we wouldn’t be around to see him again.

Although the doctor called Dad’s coughs productive, they exhausted him. By the end of the day, he was wiped out and was dreading dialysis tomorrow.

Dr. Michael Anderson started his week-long rotation on Monday, June 29. We hadn’t heard anything about him, but he rubbed Mom the wrong way right off the bat. We had become accustomed to having doctors talk with us, and Dr. Anderson wasn’t really interested in talking with the family.

During this first full week at the CCH, Dad had his first visit from Adan, the speech therapist. The plan was to meet with Dad once a week and then have another MBSS around the middle of the month. We weren’t very pleased with the frequency of the therapy sessions because we were so anxious about his inability to swallow without aspirating. Adan did say that Dad could have ice chips after oral care.

Dad was also visited by physical and occupational therapists, but they both had to stop by a couple of times because Dad was too fatigued after dialysis to engage with them. Mom told them both that afternoons after dialysis weren’t good times for Dad to participate in physical therapy because he was too weak. When they were finally able to assess Dad, they both said that he exhibited decreased strength, exercise tolerance, and balance. Physical therapy would start immediately with visits 2-3 times per week. Occupational therapy would start after he built up some tolerance to activity. They said that his prognosis was fair.

We kept hoping that he’d advance from the speaking valve to a red cap. The red cap plugs the proximal end of the tracheostomy tube. I like to think of it as training wheels for decannulation (removal of the trach tube). The doctor said that Dad still had too many secretions for them consider red-capping him. With the way he was coughing, I couldn’t disagree.

Although the respiratory therapists stopped visiting Dad during the night, the nurses didn’t stop their visits every two hours to reposition him. He complained about it several times a day, but the repositioning was necessary to promote wound healing. The wound from his fall in May had not healed, and lying on it all day and night slowed healing.

Dad seemed to be making slow progress, but with the exception of his assessment from physical therapy, he had not been out of bed. When he was at Memorial, the doctors were practically militant about him getting out of bed and into the chair, and Mom and I could not understand why the doctor here didn’t get him out of bed.

Dad was also visited by an infectious diseases specialist. He’d been on several antibiotics during the past 55 days. His WBC count was within normal limits, but they were going to continue the current course of treatment as long as they could detect patchy areas of fluid in his lungs.

Dialysis days really drained him—literally. During dialysis, they removed a minimum of four liters of fluid during each session. We had heard that these sessions would be four hours, but his sessions during this week were five hours. His extremities didn’t seem swollen, so we lay people thought that the quantity bordered on excessive. The doctor usually described Dad’s mental state as lethargic on those days. One day after dialysis, he told my mother that he didn’t think that he’d survive this ordeal. In addition to being his patient advocates, Mom and I also had to act as his cheer-leading squad to bolster his spirits, which was often the most difficult job. As serious as Dad’s health issues were, Mom was still recovering from her own health challenges.

July 2 was a pretty good day. During morning rounds, Dad told Dr. Anderson that he felt reasonably well, but repeated that dialysis was a “tough slog.” Dad was visited by a couple of physical therapists, and he exhibited some of his real personality. He laughed and joked with them during the PT session and was able to perform all activities. They observed that his mobility had improved and he was able to stand briefly.

Dad also got a shave and a mani-pedi, courtesy of Wound Care. I don’t know who was more pleased—Mom or Dad. Following the sprucing, they also pronounced his chest scar to be “beautiful.“

I had spent most of the week at home in Houston, but my husband and I were off from work on Friday, July 3, in observance of the Fourth of July holiday. When Stan and I arrived at the hospital at 1:25 P.M., Dad was back from dialysis, but he was totally wiped out. After about 15 minutes of disoriented chit-chat, we convinced him to take a nap. His WBC count was up just slightly from Wednesday, and Dad told the doctor that he thought that his pneumonia was getting worse.

When you’re in the hospital, it’s difficult to get any real sleep. During his nap. his nurse woke him to give him a heparin shot (in the stomach). Soon thereafter, Victor, a respiratory therapist, woke Dad so that he could administer a breathing treatment.

flowers_1 One of our church friends, Sandra, stopped by and brought Dad a small flag for his room. One difference between this ICU-ish facility and the ICU at Memorial was the policy about flowers. Flowers were not allowed in ICU rooms, but they were allowed here. I had sent Dad an arrangement a few days earlier, and with the flag from Sandra in the center, it looked very festive.

Very much like Memorial, the CCH is over air conditioned. I kept a sweater in Dad’s room to ensure that I would never have to suffer from the cold. By the time we left at 4:45 P.M., Mom was beginning to suffer from laryngitis. During Dad’s stay in the hospital, she developed a cough that wouldn’t abate.

July 4. I arrived at 9:00 A.M. Dad was awake and had just had his trach tube replaced. He was really having a tough time with his congestion after the change. Dad wasn’t able to wash his face in the morning, so whenever I was in his room in the morning, I’d wipe his eyes with a cool, damp wash cloth. Dad and I visited until I left for lunch.

Mom and I returned to the hospital at 1:30 P.M. and were told that Dad still had too many secretions for the doctor to consider red-capping his trach tube. Around mid-afternoon, Michelle, the nurse, gave Dad a shot of heparin in the stomach. She also tried to fix dangling ends on his bridled feeding tube. Since he started on the feeding tube, he had pulled it out several times—often in his sleep. Recently, they had started using a bridled feeding tube, which reduces pullouts.

Later that afternoon, Earl and Marilyn, two of my parents’ good friends, stopped by for a short visit. Before he entered the hospital on May 6, Dad had proclaimed that he didn’t want any visitors while in the hospital. At the time, we thought his hospital stay wouldn’t exceed 10 days. It was now day 60, and we were relaxing his stated visitation guidelines.

After his visitors left, the respiratory therapist administered another breathing treatment. Shortly thereafter, Dad said that he was getting sleepy and suggested that Mom and I leave for the day.

Another holiday celebrated in the hospital. So far we had observed Mother’s Day, my birthday, Father’s Day, and now Independence Day in the hospital. He probably wouldn’t be released by Stan’s birthday on July 22, but it would be nice if he could eat cake by then.

From the bum’s rush to a snail’s pace

Published on August 10, 2016August 12, 2016 by mellowdee55Leave a comment

Thursday, June 18. Mom and I drove in separate cars to the hospital and arrived shortly before 8:00 A.M. Dad was still sleeping and still on CPAP. Although I knew that the CPAP gave his lungs a break, it made him look as if he was breathing hard. Blair, his nurse, told me that his WBC count was down to 9,900, which put him back into normal territory. According to Dr. Sanchez, Dad had had an uneventful night, and was doing much better today.

Janie was the respiratory therapist and, for some reason, Dad just didn’t cotton to her. He especially disliked the deep suctioning and respiratory treatment that she administered that morning. That good time was followed by the always fun mouth cleansing. Although Dad hated it, mouth cleansing is very important for patients who aspirate. If you’re going to aspirate your saliva, it should be as clean as possible. At the end of this session, Janie switched Dad from CPAP to the trach collar so that he could breathe independently. Being on the trach collar also meant that we could attach the speaking valve.

Dr. Walker, the nephrologist, said that Dad would need dialysis this day, and he’d also need to visit IR to have his dialysis catheter changed out, which was one of the prerequisites for his transfer to the Scott & White Continuing Care Hospital (CCH). She was pretty sure that Dad wouldn’t transfer to the CCH today. She added that there was a pretty good chance that they would dialyze Dad tomorrow, too. The CCH dialyzed on Monday, Wednesday, and Friday. Having dialysis tomorrow would get him in sync with their schedule.

Dad still had his chest tube, and he couldn’t leave until it was removed. Dr. Sanchez assured us that he would remove Dad’s chest tube later in the day, but I would have to hear about it second hand. I had to return to Houston for a couple of days, and I left the hospital at 10:00 A.M. As I was turning onto FM 93, which intersected with my parents’ street, I saw two ambulances turn down their street. I learned later that day that their next-door neighbor had died from a gunshot wound. It was almost too much to take in.

Dad completed his second four-hour dialysis session. The doctor thought that he tolerated it “fairly well,” but these four-hour sessions left Dad drained. Dad had a little difficulty breathing during the afternoon and was returned to CPAP support. He had lost a little blood during the catheter change out, and the IR department had a difficult time stopping the bleeding. The blood loss was enough to cause his hemoglobin level to drop, which meant that he required another unit of blood.

Friday, June 19. Dad had slept well during the night on CPAP support and was moved to the trach-collar at 7:00 A.M. According the nurse, Dad’s WBC count was down to 9,000, which was terrific news. This good news was tempered by the arrival of the dialysis nurse. As the nephrologist had predicted the previous day, Dad had more dialysis during the morning. Although Dad seemed to be progressing well, the doctors decided to delay his transfer until Monday so that they could monitor his hemoglobin levels. Later that day, Sandra, one of the church’s lay leaders, stopped by to visit Dad. This visit was the first of many from this exceptional and caring woman.

June 20. Stan and I drove from Houston to Temple separately—Stan arriving before lunch. When I arrived midafternoon, I was cautiously alarmed when I learned that Dad’s WBC count had ticked up 400 points to 9,400. Although I was assured that it was not statistically significant, any increase in his WBC count made me nervous. Mom said that he had had some pretty thick secretions, and the respiratory therapist had suctioned several times before I arrived.

We returned to the hospital after dinner so that we could say good night and speak to his night nurse.

Father’s Day, June 21. Mom and I arrived at the hospital and visited with Dad before we attended church. Dad was sound asleep, but we were pleasantly surprised to see Daytime Natalie in his room when we arrived. For the past few days it seemed that we were getting a string of new nurses—people who didn’t know him or his medical history. Natalie told me that Dad had received deep suctioning earlier that morning. She also told me that his WBC count was up to 11,400, a 2,000 point increase from the previous day.

Compared to a of couple days earlier, today he seemed lethargic and very sleepy. When he finally woke up, he kept saying that a procedure had gone wrong during the night, and he demanded to see the doctor. Because there was no evidence of any procedure during the night, when Dr. Velazco arrived, he ordered another respiratory treatment, an ABG, and an X-ray for Dad. Stan arrived shortly thereafter and Mom and I went on to church. Father’s Day wasn’t starting out as well as we had hoped.

After lunch, the three of us returned to the hospital to celebrate Father’s Day. Dad opened his cards, but he didn’t want to open any gifts. It was raining when Stan left for Houston around 3:00 P.M. We didn’t like to leave our cats at home alone too long. Stan had made this trip several times since Mother’s Day, but I never relaxed until I knew that he had arrived home safely.

It hadn’t been the greatest Father’s Day. Other than hearing that Stan had made it home safe and sound, the best news of the day was that the ABG didn’t show any problems with Dad’s blood gases. Mom and I left for the evening at 5:00 P.M. feeling just a little depressed. It seemed like we kept meeting obstacles that we couldn’t overcome.