dialysis – Tale of Two Parents

Shaky progress, but still recovering

Published on January 29, 2019January 29, 2019 by mellowdee55Leave a comment

September 2, 2018. Sunday mornings at the hospital are usually pretty quiet, especially in the parking lot. On Sunday, I can get a decent parking space, unlike most other days. However, today while I was walking from my car to the hospital, the usual quiet was disrupted by a hospital employee who was chasing and calling after a resident “runner.” During the day, you periodically hear announcements about missing patients who wander away from their rooms, but rarely have the patients left the premises. I tried to imagine the backstory to this event that broke the monotony of the walk into the hospital.

I arrived at Dad’s room at 7:45 A.M. His breakfast tray had arrived and was on his bedside table. He was still sleeping, but I was able to wake him easily. He finished about half of his breakfast before the physical therapist arrived. I never knew if we could expect to see a physical therapist on the weekend and I was pleased that Dad was being seen by a therapist during the holiday weekend. The session got off to a rocky start when the therapist accidentally dumped the contents of Dad’s urine bag on the floor. While she and the nurse cleaned the floor, which took a little over five minutes, Dad was able to sit without assistance on the side of the bed. The therapist was hesitant to have Dad stand up because his blood pressure was a bit low, but eventually, she decided to let him try. After standing, she retook his blood pressure, and it had elevated into the normal range. Because an aide didn’t assist her today, the therapist did not have Dad walk. Instead, she had him sit and stand a couple of times and then do some leg exercises on the bed.

After therapy, Dad was alert enough to swallow his morning pills of Midodrine and aspirin with juice.

This morning, Dad was fixated on dreams from last night about his father’s surgery and “what they’re doing to him at this place.” It was a confusing conversation because his father had died of a pulmonary embolism in 1957. I was able to get him to drink a couple of cups of coffee, hoping that it might help him clear his head and to stay awake.

Unfortunately, the effect of the coffee was short-lived, and Dad fell asleep moments before Stan and Mom arrived. Although he was awake when Dr. Hunt, the attending physician, arrived, he was very groggy. When the doctor questioned Dad about why he was in the hospital, he said that he was in Temple because of a broken leg, which was closer to reality than his answers yesterday.

I, not to mention his night nurse, was concerned that Dad’s biological clock seemed reversed. From what I had heard from the nurses, he was awake most of the night and then slept during the day. When I asked the doctor about what we could do to switch Dad’s inner clock, he said that he would check with neurology. I told the doctor that at home, Dad often took ½ of a Simply Sleep pill (which was ¼ of the recommended dosage), so they should exercise some caution when prescribing sleeping medication. The doctor said that he would check the ingredients in these pills and note on Dad’s chart that they should start Dad on low dosages of any sleeping medication.

Mom and I left for church at 10:20 A.M. After church, Stan told me that Dad had been awake about 75% of the time that we were gone, but that he was still a little confused.

Nephrologists base many of their healthcare decisions on the amount of liquid gold (urine) collected during a 24-hour period. When the nephrologists arrived for their morning rounds, Stan told them about the physical therapist’s mishap with the urine bag. However, they weren’t concerned and said that after taking diuretics yesterday, Dad had voided a liter of urine, so they would not dialize today. Instead, they would check his lab results tomorrow before dialysis to see if his kidneys were removing the toxins and electrolytes in his blood. Because Mom and Dad didn’t like the Scott & White dialysis center, we would need to arrange for Dad to receive dialysis at another location—one that wasn’t conveniently located near their home. This refusal to use the local dialysis center was an inconvenience that they would regret and that I wished that we could avoid. In any event, the nephrology team planned to get Dad started on a Monday-Wednesday-Friday schedule that would continue following his discharge from the hospital.

Following our lunch at home, Stan, Mom, and I returned to the hospital at 2:30 P.M. Dad was sound asleep, but I was able to rouse him for about two seconds. I had been looking forward to this weekend so that Dad and Stan would have time to visit. Dad’s inability to stay awake was torpedoing my plans, and I hoped that the doctor would prescribe something for Dad that would enable him to sleep tonight. Tomorrow was Labor Day, and I wanted the guys to have time to visit and perhaps play cribbage.

At 3:00 P.M., Kayla, Dad’s nurse, set up the creatinine test that had been ordered by the nephrologist. Before she was finished, Maryline, Dad’s aide, entered the room and said that she was going to bathe him. I told her that his toothbrush was in his travel shave kit that was in his closet, so she said that she would also brush his teeth. While Mom and I waited in the 6 North waiting room, Stan drove to Starbucks to get us some coffee. Kayla came and got us at 3:45 P.M. When I went back to Dad’s room, I noticed that his teeth looked shiny and clean.

He slept for most of the afternoon but woke up for dinner, although he was still very confused. He kept saying that something was different. We couldn’t figure out what he was talking about and what was different. I wished that he could have given us some clue as to what he was talking about. After he finished eating, Mom, Stan, and I returned home. I said a quick prayer that Dad would get a good night’s sleep. He seemed to be progressing well, but I wanted him to be more awake during the day.

Little victories and setbacks during recovery

Published on January 2, 2019December 31, 2018 by mellowdee55Leave a comment

August 29, 2018. Before going to bed last night, I had washed a load of clothes and then placed them in the dryer with the intention of drying them in the morning. When I woke up at 4:00 A.M. this morning, I was pleased that I remembered the wet clothes, and started the dryer. Life’s little victories seemed important these days.

When Mom woke up at 6:00 A.M., she said that she was exhausted and that she was frustrated that she didn’t have time to do anything around the house. Last night, Stan and I had talked about trying to get Mom to stay at home and rest, so I took this opportunity to suggest that she stay at home this morning, and I would bring her with me to the hospital after lunch. She gratefully accepted my offer.

I arrived at Dad’s room shortly before 7:45 A.M. He was sleeping, but he was easy to wake. After saying hello, he told me that there had been about 15 people in the room overnight, which seemed implausible to me. I later learned from his night nurse that Dad had triggered his bed alarm by getting out of bed, and when she got to the room, she found him on the floor in a “praying” sort of position, probably trying to get back into bed. She had to call for assistance to get him back into the bed, but I doubt that the task required 15 people. However, keeping Dad in bed had proven to be one of life’s most difficult challenges. Thank goodness he didn’t injure himself.

Dr. Tanner, one of the nephrology residents, stopped by this morning and confirmed what the nurse had told me yesterday afternoon. Because of Dad’s low blood pressure, they were unable to remove more than 500 ml of fluid yesterday during dialysis. He said that they were going let Dad’s body rest today and perhaps try another dialysis session tomorrow. Wasn’t it just yesterday that I had prayed that Dad could maintain enough blood pressure to keep removing this excess fluid?

After Dr. Tanner left the room, someone from the food & nutrition department dropped off Dad’s breakfast tray. It was a messy process, but with some assistance from me, he ate about half of the food on his tray. The linen cart for our section of 6 North was conveniently located across from Dad’s room, and the nurses told me that I could use it. Before Dad started eating, I grabbed a bath towel and used it like a large bib, which saved me and the nurses a lot of clean-up time. I was happy to see that in the last couple of days, he had graduated from receiving Nepro through a feeding tube to a tray containing oatmeal, an omelet, an English muffin, a carton of Nepro, milk, and coffee. As nervous as I was about his status, I had to admit that his condition had improved a lot in the past five days.

At 10:00 A.M., I used the call button to summon the nurse. Once again, Dad had slid down the bed and needed to be repositioned. While Aspen, the nurse, was there, I asked her if she had seen the doctor or his PA or any of the therapists. I didn’t want to risk missing any of them by leaving for lunch at the wrong time. Aspen replied that she had not seen any of the providers this morning. I spent the next hour trying to engage Dad in some sort of meaningful conversation while he drifted in and out of sleep.

At 11:00 A.M., Katherine, the occupational therapist, arrived. She had barely started getting information from Dad when Amber, the physical therapist, and her student, Shelby, arrived. The room became a hubbub of activity when the nephrologist also arrived. It was positively uncanny how all of the care providers seemed to arrive at the same time. Thankfully, the nephrologist stopped by, only to confirm what Dr. Tanner, his resident, had said earlier. I was glad that his visit was brief. I was eager for Dad to get started with his physical and occupational therapy.

Within moments of the nephrologist’s departure, a knock at the door announced the arrival of Pastor Tom. When he entered the room, he looked at Katherine and said, “Hi, sister.” It seemed that Katherine was also a member of my parents’ church. I know that it doesn’t make any difference in a person’s care, but I always felt better when I was able to make a personal connection with the health care provider, so Pastor Tom’s visit seemed fortuitous. Pastor Tom stayed only long enough to exchange enthusiastic greetings with my father. Although he was there for only a couple of minutes, seeing him always acted like a shot of adrenaline for Dad, which was just what was needed at that moment.

Amber and Shelby were able to get Dad to sit on the side of the bed. While he sat on the side of the bed, Katherine exercised his arms and checked his toes and legs. Katherine and Amber then worked together to get Dad to stand up, with me cheering him on from across the room. By 11:20 A.M., Dad was exhausted and ready to lie down.

As the occupational and physical therapists were getting Dad resituated and comfortable in bed, Adan, the speech therapist, entered the room to ask if Dad had been receiving his food trays. I told him that the breakfast tray was great, but I questioned the wisdom of giving Dad rice for dinner last night. He agreed and said that he would modify Dad’s diet to dysphagia III so that his trays would not include loose foods like rice. When I asked him if he knew anything about Dr. Hunt, who was starting his week-long rotation today, he said that he thought that the doctor was cool.

So far, I’d seen everyone today that I wanted to see, with one exception: I had not seen Dr. Hunt. However, it was now 11:40 A.M., and I needed to get home for lunch. After a quick lunch, Mom and I returned to Dad’s room at 12:50 P.M. When I reached out to touch his right arm, I noticed that his gown was damp on his right shoulder. When I mentioned the damp gown to Aspen, she said that while I was gone, they tried to give him a pill and some water had spilled on his gown. I don’t know if I could swallow a pill while slumped down in bed, especially if I was in a groggy and confused state. I didn’t question her more, but I assumed that he was able to swallow the pill.

Shortly after 1:30 P.M., Dr. Hunt arrived and began to summarize Dad’s current condition. During his summarization, he mentioned the presence of a blood clot in Dad’s neck, which was new news to me. I knew that he was receiving a blood thinner, but the doctors had only mentioned the likelihood of platelets clotting as the reason for giving him a blood thinner. Doctor Hunt mentioned that he had requested a consult with hematology/oncology to help him determine if Dad had developed an intolerance to heparin or not. He also said that he didn’t want Dad released from the hospital to a rehab facility until we had established a baseline for his kidneys and weight, and a baseline for his mentation. He wanted to know if neurology thought that his confusion was a permanent or transient condition. Because Dad had fallen last night, the doctor wanted to ensure that Dad had not fallen on his head. For that reason, he ordered a CT scan. I was skeptical about the need for the neurology consult and the CT scan. Usually, when Dad fell out of bed, his fall was more like a slide that started with his feet. The cynic in me thought that all of these consultations and tests were ways in which to inflate the hospital bill. As long as the tests didn’t harm or hurt him, I reluctantly agreed with the doctor’s suggestions.

Within the hour, a gurney appeared outside of Dad’s room, and he was transported to the x-ray department for his CT scan.

At 3:15 P.M., a couple of doctors from the hematology/oncology department visited us to talk about some of the problems that Dad might be having with heparin and HIT. They said that sometimes they could substitute Argatroban for the heparin, but in Dad’s case, they thought that this drug was too harsh. Because Argatroban is metabolized in the liver, it would be too hard on Dad’s liver, which had been under stress during this hospital stay. They said that they also had been viewing Dad’s white and red blood cells under a microscope and had noticed a slight change in their shape, which might indicate the start of a cancerous condition. However, the only way that they could know for sure was to order a bone marrow test, and we all agreed that at Dad’s age, we didn’t need to go down this path. They speculated that his liver problems probably started with the sharp drop in his blood pressure the day after his latest surgery. Although his blood pressure had rebounded, it would take more than a few days for the liver to recover.

When Mom and I left at 5:00 P.M., I had some very mixed feelings about the day. On the one hand, he had started his physical therapy, and the doctor was talking about Dad’s discharge from the hospital. On the other hand, we were discussing blood clots, the possibility of a cancerous condition, and the need for a CT scan to determine whether he had sustained a head injury. Although Mom felt better after having spent the morning at home, Dad’s morning had seemed a bit more positive than his afternoon, and I was sorry that she had missed it.

Out of ICU, but not the sort of day we had envisioned

Published on December 26, 2018January 12, 2019 by mellowdee551 Comment

August 28, 2018. Mom and I arrived at the hospital at 8:00 A.M. This was Dad’s first day out of the ICU, and we were optimistic about the day. When we arrived at room 634 North, Dad was sleeping, and I thought that he looked terrible. His face was more swollen than I had ever seen it. Also, I was concerned about his coloring, so I wondered about his oxygen saturation. We were able to wake him, but he kept dropping off to sleep in mid-sentence. His oxygen mask had been removed, and I didn’t know if he kept dropping off to sleep because of low oxygen, fluid overload, or if he was just naturally sleepy. He complained of constant interruptions during the night and said that someone had come into his room this morning, but I was never sure if he was remembering dreams or reality.

At 8:15 A.M., Conner, Dad’s nurse, entered Dad’s room for the first time since the shift change at 7:00 A.M. Following our introductions, she accessed Dad’s chart and told us that Dr. Jennifer Moran, the attending physician for 6 North, had asked for someone in Orthopedics to look at Dad’s surgical wound vac. It had been in place for more than five days, and it seemed to the doctor that it might be clogged. When I asked her if Dad was scheduled to receive physical therapy, she said that only speech therapy was on his schedule, but she would ask for physical or occupational therapy today.

When I asked if he was scheduled for interventional radiology (IR) to have the clog in his fistula removed, she confirmed that he was on the IR schedule for 1:00 P.M. today. With the IR appointment scheduled for the afternoon, I was fairly certain that Dad would not receive dialysis today. However, his ability to receive dialysis hinged on whether or not IR could clear the clog in his fistula.

I had barely finished speaking with Conner when someone from the Transportation team arrived to take Dad to IR. I should have learned a long time ago that schedules in the hospital were fluid and much like those of remodeling contractors. To help the Transportation aide prepare and move Dad to the gurney, Conner summoned Miguel, Dad’s aide (CNA). I learned then that Dad had indeed remembered reality and that it was Miguel who had interrupted Dad’s sleep early this morning.

Because someone had to sign a consent form before IR could perform the procedure, one of us needed to accompany him to IR. Either one of us could sign, but we both wanted to accompany Dad, who was now sleeping soundly on the gurney. We arrived at IR at 8:35 A.M. Ten minutes later, Nathan, an IR nurse took Dad’s vitals and obtained some background information about Dad from us.

One of the interventional radiologists is a member of FUMC-Temple, my parents’ church. I was pleased when I saw that it was Dr. Dollar who entered Dad’s bay. I reminded him that Dad had been a patient of his twice before and told him that Mom and I had attended his daughter’s confirmation. We joked that the pastor would give the doctor hell if the procedure didn’t go well. Before Mom and I left Dad, Dr. Dollar mentioned that because the attending physician wanted to know if Dad had Heparin-induced thrombocytopenia (HIT), they would test him for that. Because Dialysis patients usually received Heparin before and during dialysis to prevent blood clots, they could develop HIT over time. We woke Dad, kissed him, and let him know that we would be waiting in his room for him. At 9:20 A.M., Kristi, the IR surgical nurse, wheeled Dad from his bay and Mom and I found our way to the x-ray waiting room.

Mom needed to have some of her heart medicine prescriptions refilled. Unfortunately, her primary care physician who wrote the prescriptions had recently retired. I thought that Mom’s cardiologist should prescribe all of her heart medications, and we decided to schedule an appointment for Mom to see her. Because Mom’s cardiologist works in the Scott and White Heart Center, which is located on the first floor of the hospital, we decided to spend some of our wait time scheduling an appointment.

At 10:25 A.M., Mom and I walked back to the x-ray waiting room to check on Dad’s status. We were told that they were almost finished and that we could wait there to speak with the surgical nurse. A few minutes later, Kristi, who had assisted Dr. Dollar, said that they were able to remove the clot and that he should be able to have dialysis at any time, which was excellent news. Because this procedure had been successful, Dad would not require another procedure to insert a dialysis catheter, which could have increased his odds at contracting an infection.

We arrived at Dad’s room about 15 minutes before he did and in time to speak to the nephrology team, which was making their morning rounds. They asked us if we knew the results of Dad’s procedure. When I relayed what Kristi had told us, they said that they would schedule Dad for dialysis this afternoon. I had been very worried about Dad’s apparent fluid overload condition this morning and was pleased that he would have some of that excess fluid removed today. He had had a lot of dialysis in the eight days that he had been here. I prayed that he could maintain his blood pressure until all of the excess fluid was removed.

When Dad returned to his room, Conner changed the bandages that protected his recent skin tears and took his vitals, which were great. She also said that she would remove the annoying wound vac that had been left on by the orthopedic surgery team. It didn’t seem to be helping Dad’s situation and was just another annoyance for him.

Mom and I left for lunch at 11:30 A.M. so that we could get back to Dad’s room before he went to dialysis at 1:00 P.M. However, when we arrived at Dad’s room at 12:45 P.M., he was already gone. At 1:00 P.M., Conner stopped by Dad’s room. She told us that she had just returned from accompanying him to the dialysis room, and would be glad to take us there so that we could be with Dad. I had a deadline to attend to and opted to stay in Dad’s room while Mom went to sit with Dad.

At 2:30 P.M., Mary, a hospital pharmacist, came to Dad’s room to ask me about his at-home medications. She wondered if Dad was using more than one pharmacy because most of his medications had not been refilled in quite some time. I found this news disturbing, yet not surprising. Dad often (defiantly) said that he was not taking his medications. There was one, Renvela, that I hoped that she would find had been refilled at the Veteran’s Administration Hospital, but I wasn’t holding out much hope.

At 3:40 P.M., Dr. Potter and Dr. Murdette stopped by to check on Dad’s fistula. Dr. Potter is Scott & White’s new transplant surgeon and had replaced Dr. Gregory Jaffers, who had recently retired. The transplant team performs the fistula surgery, and Dr. Jaffers had performed Dad’s fistula surgery in 2016. Dr. Potter said that he had been in surgery all day and hadn’t had a chance to see Dad and had hoped to meet him. I assumed that Dr. Potter had heard about the clot in Dad’s fistula and thought that he should meet him should he have to repair the fistula. I told him that the IR procedure had gone well and that Dad was having dialysis now.

Dad and Mom returned from dialysis at 5:15 P.M. As Conner was getting him resituated in the room, she told me that they were able to remove only 500 ml from him today because his blood pressure kept dropping. After receiving that disappointing news, I asked her about the results from his latest labs, which were run this morning. It seemed that his WBC count had jumped from a normal range of 10 yesterday to an elevated 14 this morning. I was very concerned that Dad was fighting a new infection.

Dr. Moran stopped by at 6:15 P.M. I expressed my alarm at Dad’s elevated WBC count, but she didn’t think that it was an issue because he didn’t have an elevated fever and his blood pressure was good. She told me that today was the last day of her rotation. Starting tomorrow morning, Dr. Hunt would take over as the attending physician. If Dad was developing an infection, she said that Dr. Hunt would be a good attending physician for Dad; in addition to being an internist, he was also certified for infectious diseases.

Mom and I left the hospital at 7:15 P.M., tired and unsure of Dad’s status. I hoped that Dad’s uptick in his WBC count was of no concern. Mom and I were both tired, and I was now worried about her continued weight loss. She suddenly seemed frail to me and she had no energy. She also had no appetite and I could not get her to eat more than a couple of bites of dinner; however, she did eat an ice cream cone.

I had only planned for a short trip to Temple for Dad’s surgery on August 22, and I was now out of clean clothes. It seemed like my trip would be extended for some indeterminate time, so I had to wash some clothes before I could go to bed. I was tired and frustrated and capped off my evening by being a jerk and snapping at my exhausted mother.

Before going to bed, I called my husband, Stan, and updated him on the activities of the day. Before we hung up, Stan said that tomorrow would be a better day. From his lips to God’s ear.

Holding steady in the ICU

Published on December 4, 2018December 2, 2018 by mellowdee55Leave a comment

August 25, 2018. When Dad had been hospitalized in 2015, extended time without eating had left him unable to swallow food without aspirating. Against all the odds and the prognostications of the naysayers, he had regained his ability to swallow again. The fear that he could suffer again from dysphagia gripped me, probably irrationally. Before Mom and I left home for the hospital this morning, I texted Adan, our friend and speech pathologist at Scott & White, for his advice. He told me to ask the attending physician for a speech consultation. Adan added that he was off work until Monday, but that he would alert Holly, the speech pathologist who was working this weekend. Holly was another Scott & White employee I really liked. Even if she couldn’t help Dad this weekend, just seeing her would provide calming relief to Mom and me.

Mom and I arrived at the hospital shortly before 8:30 A.M. When we entered Dad’s room, I checked the board to see the names of the nurses and aides who were assigned to him today. When I saw that Natalie was his nurse, I wondered if it could be the Natalie that we knew in 2015. Less than a minute later, I got my answer when she walked into the room. I was so thrilled and relieved to see her again that I ran to her and hugged her. In retrospect, I probably picked up all sorts of germs when I hugged her, but I didn’t care and would do it again. Not only was she an angel in blue scrubs, but she was also familiar with Dad’s medical history. Natalie, whom we had referred to as Daytime Natalie, usually worked in the Cardiothoracic Intensive Care Unit (CTICU) and was helping out in the Medical Intensive Care Unit (MICU) for a few days. Dad had also been in the MICU unit for about a month in 2015, and another nurse came by to say hello, saying that she thought that we looked familiar.

Shortly after our reunion with the nursing staff, the nephrology resident stopped by and said that she didn’t think that Dad needed to be dialyzed today. However, she added that the nephrologist would stop by later during nephrology rounds, and he would make the final decision after seeing Dad.

At 9:45 A.M., the doctor and his entourage of fellows and residents entered Dad’s room. He reiterated that Dad was very sick. His low blood pressure, which they were keeping in the safe range with Levophed, was affecting his liver, kidneys, and lungs. When I asked about a speech consultation, he said that Dad’s blood pressure would need to increase before they could consider letting him swallow food. He went on to say that as it was, Dad was in danger of aspirating his own saliva. When I mentioned that Dad’s face and extremities seemed very puffy from excess fluid, the doctor said that dialyzing him could have unintended consequences. Although Dad needed to have some of his excess fluid removed, removing the fluid could cause his blood pressure to drop, so dialyzing him today seemed out of the question.

The doctor asked me about whether we would consent to using a ventilator. I told him that I would view using a ventilator as a last resort. When I asked if we could use CPAP or BiPap for oxygen instead of a ventilator, he said that CPAP had some risks, but inserting the ventilator also carried risks because you had to anesthetize the patient. I was so frustrated with Dad’s situation, and it seemed that everything hinged on our ability to increase his blood pressure. I hoped that Mom and I would not be faced with this decision.

Just when we thought that we understood Dad’s plan for the day, the dialysis nurse entered the room. By 11:30 A.M. she was finished with Dad’s setup, and his eight-hour session had begun. She told us that the nephrologist wanted to see if they could safely remove 300 ml/hour. Over an 8-hour period, he could have as much as 2,400 ml removed, which would be great if he could tolerate it. They had given him a liter of saline the other day to increase his blood pressure, so I was not overly optimistic that they could reach their goal. The dialysis machine monitored Dad’s blood pressure and would alarm if Dad’s blood pressure dropped. Dr. Idoux, the nephrologist, said that Dad might need to be dialyzed every day for a while if he could tolerate it. I prayed that we could safely remove all of the excess fluid that he had accumulated over the past 7 to 8 months.

Because I knew that she would be honest with me, I spoke with Natalie about the wisdom of my leaving Dad for about 20 hours. She said that he seemed to be trending in the right direction, although during her time as a nurse, she had seen patients die who were about to be discharged. On that happy note, I posted my mobile phone number in the room and ensured that the nurses would contact me if I needed to come home. Johnson City was only a two-hour drive from Temple, and we would return if she or another medical provider thought that Dad was in jeopardy.

After taking a short lunch break, Mom, Stan, and I returned to Dad’s room at 12:45 P.M. Dad was still on dialysis, and his blood pressure was still holding steady. Levophed was supporting his blood pressure, but they had not needed to increase the dosage to compensate for the loss of fluid. Dad seemed a bit more aware, but he still faded in and out. I prayed that he would not wake up, notice that he was on dialysis, and pull out the lines.

I hugged my parents goodbye, and Stan and I left for Johnson City at 2:35 P.M., hoping and praying that both of my parents would be OK until I returned home tomorrow morning.

Tap dancing along the slippery slope to recovery

Published on June 19, 2018June 18, 2018 by mellowdee551 Comment

Before Dad’s hospitalization, his organs had been in pretty good working order. However, the aspiration and sepsis events impacted his kidneys, which resulted in his dependence on dialysis. To say that my father hated dialysis is an understatement. He hated the inconvenience of it, how it interfered with his ability to travel, and how much it tired him. In addition to the four-hour sessions that impacted his daily life, he also had issues with the dialysis center. Although the place was spacious and had nice dialysis beds, Dad’s opinion of the facility changed drastically when he moved from being a dialysis catheter patient to a fistula patient.

Because of the potential for infection, only RNs can work with dialysis catheter patients. However, techs are trained to hook up dialysis patients who have fistulas. My father quickly learned that not all techs are created equal. Dad had a problem with bleeding, which could be reduced or avoided if the tech took care when removing the needles at the end of the session. A couple of careless techs caused bleeding that the nurses at the dialysis center could not stop within 60 minutes, which was their threshold for calling 911. As you might expect, going to the emergency room significantly increased the time required to solve the problem. During one of Dad’s trips to the ER, the paramedics stopped the bleeding during the two-mile trip to the hospital, but because of their protocol, they still had to take him into the ER, and blood was drawn as part of the normal procedure (ironically, to ensure that he had not lost too much blood). If that wasn’t enough, my parents paid a $200 co-pay for the privilege of visiting the ER.

I generally heard repeated versions of Dad’s war stories during each phone call and visit to my parents’ house. I inherited many of Dad’s unfortunate circulatory traits, so I’m pretty sure the bleeding episodes would have also left me cold, if not bitter. It didn’t help that the decorum of the techs seemed a bit unprofessional and cavalier, and sometimes inappropriate. During my few visits to the dialysis center, I wondered if similar behavior by some of the techs might warrant a call to the Human Resources department.

Several years earlier, my mother had been the president of the Colorado Mesa University (CMU) foundation. Their annual meeting was scheduled for November 2017, and past presidents usually attended this meeting. Dad wanted Mom to attend, and he wanted to accompany her, which meant that he would need dialysis during their trip. CMU is located in Grand Junction, Colorado. Although Grand Junction and Temple are similar in size and population, I suspected that Grand Junction would not have a dialysis center that could match Temple’s. According to my parents, I couldn’t have been more wrong. Although it fell short in square footage, it whomped the Temple facility in the professionalism of its staff. When Dad asked one of their techs why they didn’t have chairs, she replied that she wouldn’t have had time to sit even if they had chairs. This environment contrasted sharply with that of the Temple facility.

I wasn’t surprised when Dad started needling Dr. Issac, his nephrologist, to test him to see if he still needed dialysis. Unlike most of the dialysis patients, Dad often had only the minimum amount of fluid removed during his dialysis session. Although Dad’s tests showed that he still required dialysis, Dad was able to convince Dr. Issac to reduce the time from 4 hours to 3-1/2 hours. Dad eventually got the doctor to reduce the time to 3 hours, which enabled him to get home before 11:00 A.M.

Because Dad received co-pay bills for physician visits to the dialysis center, he decided to take advantage of his VA benefits. Temple is near Fort Hood and has a large VA facility not far from my parents’ home. During Dad’s first visit to the VA’s nephrologist, that doctor allegedly told Dad that he didn’t think that Dad needed dialysis, which alarmed me. Dr. Issac had been treating Dad for two years, and this VA doctor had seen Dad for 15 minutes.

Now that Dad was convinced that the local dialysis center was less than stellar, he despised it more than ever and embraced the comments of the VA doctor. Armed with these convenient comments from the VA doctor, Dad was able to convince Dr. Issac to run another series of tests to check Dad’s need for dialysis. When reviewing the test results with Dad, Dr. Isaac said that Dad’s condition was borderline, and suggested that nephrology personnel closely follow Dad while he took diuretics. If the trial of diuretics worked, Dr. Issac would remove Dad from dialysis.

For all intents and purposes, Dad had approximately three liters of fluid removed each week, which would still need to be removed. With my parents’ blessing, Dr. Issac called me to ensure that I understood his plan so that I would be knowledgeable enough to discuss the process with my parents. In short, the doctor wanted Dad to go to the dialysis center once a week for blood work, weigh-in, and blood pressure check to see how well the diuretics handled Dad’s excess fluid. Dr. Issac prescribed that Dad take three tablets daily. I don’t know what Dad expected, but the diuretic had an immediate effect. Dad said that there was no way that he would take three pills a day. As a matter of fact, he said that he might take only one pill a week.

Dad went to the dialysis center on December 11 for his first weekly checkup, and according to my parents, the results were fine. When the nurse tried to schedule another appointment for December 20, Dad said that he would not see any doctors during the Christmas holiday. I was disappointed because I had wanted to accompany him (and the doctor wanted me to accompany Dad) on this appointment. While I was visiting my parents during the Christmas holiday, someone from the Scott & White dialysis center called the house and scheduled a follow-up appointment for Dad on January 26, 2018. I was concerned about the significant interval between visits and the lack of supervision during this test, especially now that Dad was taking the diuretics on a haphazard basis.

On January 21, 2018, I emailed Dr. Issac and updated him on what my father had and had not been doing. I asked if he could revisit Dad’s prescription during Dad’s January 26 appointment so that Dad might be more inclined to take the pills. I wasn’t expecting a response from Dr. Issac, so I didn’t log on to Dad’s MyChart account to see if the doctor had replied.

Unfortunately, the doctor did reply to my email the next day stating that Dad did not have any appointments scheduled with physicians at Scott & White, and then he asked me who Dad was seeing. My parents learned about the non-existent appointment when they showed up at the dialysis center on January 26. They were so mad that they vowed never to return to the dialysis center or see Dr. Issac. I was also very upset, but for different reasons. Not only did I respect and like Dr. Issac, but it had also now been more than a month since Dad had started self-medicating without the knowledge of a physician. Worse still, the more that I encouraged him to take the pills, the more that he dug in his heels to do as he pleased. The more that he resisted taking the prescribed drugs, the more I worried that he was dancing too close to the edge.

Birthdays, emergency room miracles, and healthcare milestones

Published on May 29, 2018May 29, 2018 by mellowdee55Leave a comment

June 18, 2016. Stan and I were in Temple to celebrate my birthday, which had been on June 9 and Father’s Day, which was this Sunday. This weekend marked the return to our tradition of celebrating Father’s Day and my birthday at the same time. On my last birthday, Dad had been unable to swallow, let alone eat cake. His condition had remained unchanged for Stan’s birthday in July, Mom’s birthday in August, and his birthday in October. During that time, I had become resolute that when Dad could eat cake again, I would bake a cake that represented all of the missed birthdays. I envisioned a cake of four layers: a layer for each of us.

I’m partial to rum cake, Mom likes carrot cake, Dad likes chocolate, and Stan likes apple pie, so he would have to be happy with a reasonable cake alternative. To help expedite the process, I purchased four boxes of cake mix and pulled out the cake pans.

The finished cake sported numeral-shaped candles, each candle representing the second digit of our ages: 1, 2, 8, and 9. I had not considered the weights of the layers, and when I was finished, the cake resembled something that you might see in a Dr. Seuss book. I also hadn’t anticipated how much extra cake we’d have. Needless to say, we would not run out of dessert for quite some time. We all were able to enjoy our favorite day, and I was thankful that all four of us could eat cake.

July 1. Today was a big day for Dad. Dr. Jaffers had decided that the fistula was sufficiently cured and could now be used for hemodialysis. After more than 13 months of receiving dialysis via a tunneled hemodialysis catheter, today the catheter would be removed. He had had this catheter since September 29, 2016, just over nine months.

Like many of the other procedures that Dad had had, this one would be simple and would be performed in the interventional radiology (IR) department by Dr. Dollar, the same interventional radiologist who placed the catheter in September.

The three of us arrived at the Interventional Radiology department at 12:30 P.M., and Dad was wheeled away in a gurney approximately 20 minutes later.

The nurse brought him back to the recovery area at 1:40 P.M. It seemed that the procedure had not been as simple as anticipated. Because the catheter had been in place for nine months, his body had sort of glommed on to it. As we left, the nurse told us that Dad would need to wear his dressing until Sunday afternoon, two days from now. If he showered before that time, he would need to protect the dressing with a shower shield. Once the dressing was removed, he could shower like a regular person. This news had been a long time coming and was like music to our ears, especially Dad’s.

After dinner, I asked Dad if he or Mom had checked his dressing since he had come home. Mom said that she hadn’t checked it, so we asked Dad to unbutton his shirt for us. The dressing was very bloody, and even Dad was concerned about the pool of blood that had collected. It was now after 7:00 P.M. on a Friday and holiday weekend. This was the second time that we had scheduled a simple procedure on a holiday weekend, which made me question our sanity.

We located the papers that the nurse gave Dad when he was discharged. I called the after-hours phone number and asked to speak with the on-call IR resident. After being connected to Dr. Jeffrey Rhea, he asked me a series of questions to help him decide our best course of action. I asked him if I could text him a photo of the dressing area. He liked that idea and at 7:30 P.M., I sent him the first photo. He called me and asked for another photo that included more of the clavicle area, which was the region of his primary concern.

After reviewing both photos, he said that he didn’t see anything emergent and suggested that we stop by the IR clinic on Saturday after dialysis. As much as Dad hates the Scott & White emergency department, he, Mom, and I decided that he should get rid of the oversaturated dressing before tomorrow afternoon. I texted the doctor and told him that we were going to the emergency room. While en route to the hospital, he texted me as asked for our ETA. When we stopped at a signal, I responded that we were less than five minutes from the hospital.

At the hospital, I was thankful for Dad’s accessible parking placard because, except for the accessible parking spots, the parking lot was full. With me nervously holding on to the back of Dad’s shirt, he walked into the hospital on his own. As I had expected, the waiting room was packed. In the intake line, one person was ahead of us and speaking with the clerk. Off to the side, I noticed a woman telling a hospital employee that her daughter had arrived earlier in an ambulance and was in triage. She was late getting inside because it took her several minutes to find a parking space. When the person in front of us left, I held Dad back and told him that we would let the concerned mother go ahead of us. The slight delay would serve us well.

When it was Dad’s turn, he explained to the clerk why he was there. When she finished questioning him and completing her paperwork, she told Dad to raise his arm so that she could fasten his ID tag around his wrist. At that moment, Dr. Rhea seemed to appear out of thin air, grabbed the ID bracelet, and said that he’d take care of us. He then told me and Dad, who was now in a wheelchair, to follow him to the end of the waiting room. We waited there while he gathered supplies from a couple of cabinets. As he was about to remove Dad’s dressing in the middle of the hallway, I reminded him that we were sitting in the middle of the main thoroughfare between the waiting room and the examination rooms. He acknowledged that the location might be problematic and had us move out of the waiting room, although we were still in a hallway. One of the ER nurses gave us a questioning look when she saw my father and all the blood from his dressing. I laughed and said, “Is this the OR?” She replied, “No, this is the ER.” Dr. Rhea quickly explained that he was just changing a dressing and would be out of the way in a few minutes.

When Dr. Rhea was finished, he wheeled Dad back to the waiting area and toward the entrance of the hospital. As we wheeled Dad to the parking lot, we thanked the resident doctor profusely. I’m fairly certain that our resident violated hospital protocol, but we appreciated his “git ‘er done” attitude. This trip to the hospital was truly an emergency room miracle: we completed the trip from home, to the hospital, and home again in less than an hour. When we got home, Dad was wide awake and was in the mood for a long game of Oh Hell, which he won. After a day like today, he deserved to win.

For all intents and purposes, this surgery marked the official end to Dad’s health care odyssey—a mere 420 days after he entered the hospital for elective heart surgery. He would still need to gain some weight and strength, but he was now driving, attending church, and getting around my parents’ acre lot with little to no assistance from his cane, and he used his walker only when he went to dialysis. He had beaten the incredible odds against him and was a walking miracle.

As we looked back on the events of the past year, we acknowledged that there were a lot of couldas, wouldas, and shouldas, but we can’t change the past. We’d have to chalk up our experiences as lessons learned that we could share with others. As I had learned from my own experience with the hospital, it was easy to get sucked into the medical system and lose control of the situation and maybe even lose money. Having advocates and second opinions are vital for negotiating the healthcare industry.

Reaching another milestone: PEG removal!

Published on April 17, 2018 by mellowdee55Leave a comment

April 13, 2016. My alarm woke me, but it was only just a little after 2:00 A.M., and the alarm was in my dream. I was able to get back to sleep and woke up at 3:45 A.M. when the alarm actually went off. I think that I inherited these wake-up dreams from my father. He often wakes up early from naps, swearing that Mom woke him.

While I worked, Dad sat at his desk in my parents’ office and finished preparing their tax return. Shortly after breakfast, Brenda, the home care physical therapist, called to see if she and her supervisor, Kathleen, could stop by later in the morning to assess Dad’s progress.

I had to drive back to Houston this afternoon. I was already fighting to stay awake and decided to take a short nap during my lunch break, so I missed seeing the physical therapists when they arrived at 11:30 A.M. Dad was walking pretty well, but his recent back pain had affected his balance somewhat. Kathleen said that Brenda would focus more on his core muscles to help Dad with his balance.

Shortly after I woke up from my nap, the three of us left for Dad’s 2:20 P.M. appointment with the gastroenterologist. When we arrived, Dad weighed 151 pounds, his blood pressure was 112/69, and his temperature was 96 degrees. In the exam room, after Julie, the dietitian, asked about Dad’s protein and caloric intake, I was a little anxious when she said that Dad needed to consume an additional 20 grams of protein each day.

When Dr. Pfanner entered the exam room, he helped Dad up on the exam table and quickly removed the PEG tube. Dad didn’t feel anything, and Mom and I glanced away for a millisecond and missed seeing the “balloon” as the doctor removed it. For the better part of eight months, Dad had had a hole in his 87-year old stomach, and now I was concerned about how long it would take to heal and close. When I asked the doctor about how long Dad would have to abstain from eating and drinking, I was shocked when he said that Dad couldn’t eat anything for 4-6 hours, and then he should consume only Nepro until tomorrow. Today was the second time in four months that I had been amazed at the speed in which some of our body parts could heal. Dad’s trach stoma had healed in two days, and now his stomach would be ready to consume liquid in six hours. The epidermis doesn’t heal nearly as fast. I have had paper cuts that took three times as long to heal.

We had driven to the doctor’s office in two cars. After the appointment, I helped my parents into their car, drove to Starbucks for some coffee, and then started my drive to Houston at 3:19 P.M. The traffic was relatively light, but I was feeling drowsy when I reached Waller, approximately 40 miles from home. Fortunately, Waller had a Buc-ee’s, one of the best rest stops in Texas. I stopped to stretch my legs and buy another cup of coffee. As I walked toward the exit, I met a wall of teenagers. Five buses had just unloaded more than 100 kids. I thanked my lucky stars for my perfect timing.

I got home shortly before 6:30 P.M.

April 14. According to Mom, Dad didn’t experience any problems during dialysis today. Although his blood pressure was a little low, it was not low enough to require midodrine to elevate it. He still complained of back pain, but he didn’t feel any discomfort at the site of his PEG stoma.

I asked Mom if Dad had tried to find the thrill on his arm every morning as he had been instructed by his surgeon, and her response was not what I had hoped. She said that they often have trouble finding it and that it’s not as strong as they would have thought. I told her to ask the dialysis nurses about it and that it’s too important to ignore. She agreed that asking the dialysis nurse was a good idea and agreed to ask one of them on Saturday, two days from now.

When the home care nurse stopped by, she said that she thought that Dad might be suffering from adhesions. I can’t imagine how she came to that conclusion, and Mom never mentioned where these adhesions might be located or what the nurse suggested that we should do about them. On a positive note, Dad’s vitals were good. Evidently, this nurse had come by the house about three months ago and was impressed by Dad’s progress since then. Before she left, the nurse helped Dad and Mom find the thrill on Dad’s fistula.

April 15. Kristen, Dad’s swallow therapist, stopped by for her final session with Dad. Before she left, she said that Dad could start trying to swallow his pills. She encouraged him to start with very small pills and coat them in applesauce. Dad had been crushing the pills and mixing them with applesauce. Evidently, some of the pills tasted vile, so being able to swallow them would be a welcome change. Still, the thought of his swallowing pills made me nervous. I had been taking liquid vitamins for several years, and I suggested to Mom that we should ask Dr. Martin if Dad could swallow the pills with the liquid vitamins. When mixed with water, the liquid was a thickened liquid and quite slippery, which I thought might ease swallowing.

April 16. Dad had dialysis this morning. According to Mom, they removed about 1,500 ml of fluid. After a morning of running errands, I started my drive back to Temple, leaving my husband on the links with his golf buddy.

The highway from Houston to Temple passes through small towns, many of which get their revenue from speeding drivers. After my numerous trips to Temple, I knew when to slow down. Unfortunately, I wasn’t paying attention and resumed the 70 MPH speed a tad too early. I was stopped just outside of Somerville and got my second warning since Dad’s hospitalization last May. When the very nice officer handed me my driver’s license and warning, he advised me to watch my speed today. Because of several festivals in the area, there were many more patrol officers monitoring speeds than usual. As I eased back onto the highway, I noticed that I had stopped just a few yards shy of the posted 70 MPH sign. After setting my cruise control at 72 MPH, I arrived in Temple at 2:03 P.M.

With some assistance from Mom, Dad prepared a spaghetti dinner. Unfortunately, shortly after our nice dinner, Dad and I had another knock-down drag-out argument about his health and attitude about taking care of himself. Unlike so many other times, we eventually had a meeting of the minds and we agreed on a plan for managing his pain and boosting his protein intake.

April 17. Dad didn’t feel like going to church today, and the weather was dreary. The three of us enjoyed a nice breakfast of homemade cinnamon rolls, and then I worked on my computer until Mom and I left for church.

After the church service, we mentioned to our friend Sue, who was also the nurse practitioner at the dialysis center, that Dad was still experiencing a lot of pain. She said that she would order x-rays for him. I also asked her about medical alert bracelets for dialysis patients with fistulas. For the rest of his life, he can never have blood drawn or his blood pressure taken on his left arm. She said that she thought that we could get him such a medical bracelet.

After a yummy lunch of grilled cheese sandwiches, Mom and I went outside to cover up some cantaloupe seedlings. We were expecting stormy weather, and she wanted to protect the young seedlings so that they wouldn’t drown. After watching the depressing evening news and eating dinner, we played Oh Hell, and Mom beat Dad by three points.

April 18. Dad had a 10:00 A.M. post-op appointment with Dr. Jaffers, the surgeon who had built the fistula in Dad’s left arm. While waiting for the doctor, Dad vomited in the exam room. According to Mom, he had just taken his morning meds before we left the house. The last time that he vomited, he had just taken his meds on an empty stomach. Other than the vomiting in the exam room, the doctor thought that Dad was healing well and that his fistula should be cured and ready to use during hemodialysis by early June.

I thought that we also had an appointment for x-rays, but when we arrived in the radiology department, Dad was not on their schedule. I texted Sue because she had told me that she would enter an order for the x-rays. Evidently, she had encountered a problem with her computer, and then she became distracted and forgot to enter the orders. While we were in the radiology waiting room, the order appeared, and Dad was called by the technician after a short wait.

The x-ray process was painful for Dad. Although x-rays aren’t painful, getting up on the hard table, being repositioned on the table, and getting down from the table was painful. I hoped that these x-rays would show something useful and actionable.

During an afternoon meeting with my manager, I learned that she had accepted a position in another business unit. She had been a wonderful manager and very supportive while I’ve been working remotely from my parents’ house. The two of us had made a great team, and it felt like she was breaking up the band. Although I knew that this move would benefit her, I was a bit apprehensive about how it would affect me.

I stopped working at 5:00 P.M. for our happy hour. After a nice dinner of leftovers, we played Oh Hell, and I lost again.

Before going to sleep, I called my husband in Houston. Evidently, Houston had received between 9-15 inches of rain, depending on the area of town. According to the news, this was the worst rain event since tropical storm Allison in 2001 and has been dubbed the Tax Day Flood. Stan said that our house was OK. He didn’t know how much rain we received at our house. All he knew was that our 5.5” rain gauge had overflowed.

Another fall! A caregiver’s nightmare.

Published on March 6, 2018March 6, 2018 by mellowdee552 Comments

March 5, 2016. I drove Dad to dialysis this morning. He weighed in at 69.0 kg (151.8 lb), and the nurse told me that he would have 1,900 ml of fluid removed. From what I surmised, the doctor had established 68 kg (149.6 lb) as Dad’s dry weight. Dad took his walker with him to dialysis, but before leaving the house, Dad had breezed around the house in the wheelchair. When Mom picked him up, he weighed 67.6 kg (148.7 lb). After returning home, he walked for the rest of the day, using only his cane, and he did extremely well.

While Dad was at dialysis, Mom baked a cake and I prepared Locke’s Lasagna, Dad’s fabulous recipe for spinach lasagna. When I was finished, I spent a bit of time outside, taking photos of the backyard. My parents’ fruit trees were in bloom, and the white and pink flowers made the trees appear very delicate. When I moved in for close-ups, I noticed that the bees were also enjoying the blossoms.

Shortly after Mom left to pick up Dad, my friend Rhoda called and said that she and her husband Mike had not yet left Houston. After all the brouhaha last night about our expected guests arriving for lunch and how that was upsetting to Mom, it turned out that she wouldn’t have to worry about serving lunch after all.

A few minutes after Mom and Dad returned home, Stan arrived from Houston. The four of us ate lunch and then Stan and Dad played cribbage. The weather was nice, so while I waited for our friends to arrive, I took a walk around the neighborhood. My parents were very fond of Rhoda and Mike and looked forward to seeing them again. Rhoda and Mike arrived mid-afternoon, and after we finished all of the greetings, I commandeered Rhoda for some software assistance, leaving Mike, Stan, Dad, and Mom in the sunroom to visit.

While the lasagna baked, we enjoyed an extended happy hour and tried to catch up on the past few months. I was pleased to see that Dad ate a large portion of lasagna and a pretty large piece of cake for dessert. After dinner, the six of us played Oh Hell.

When we finished our game, Dad prepared his concoction of meds and applesauce. My parents said goodnight to us shortly after 9:00 P.M., and Rhoda and Mike left a few minutes later. My parents’ house could accommodate several guests, but because our house was still transitioning from a homecare environment, our friends opted to stay at a local hotel. Stan and I cleaned up the kitchen and went to bed around 10:00 P.M.

March 6. The four of us were up and at ’em by 6:30 A.M. Stan and my father went to Lowe’s around 8:00 A.M. to buy light bulbs, which provided Dad with a good walk. Stan let him out at the door, but Dad walked around the store and then back to the car with the assistance of only his cane.

Rhoda and Mike arrived for breakfast around 8:45 A.M. Mom and I prepared waffle batter and link sausage, and Dad ran the waffle iron. It was another nice meal, and Dad ate his fair share of waffles, and I restrained myself from reminding him to eat without talking. My parents liked to leave leftover waffles outside for woodland creatures, like foxes and possums, but the six of us didn’t leave enough for a mouse.

I had hoped that Rhoda and I could escape for a photo safari in a neighboring town, but the weather was too dreary for black and white film photography. At 10:30 A.M., I was itching to get away for a visit with Rhoda, so we decided to hit the road and hope for some sun. About 30 minutes later we arrived at the neighboring town of Cameron, and the clouds thinned out and delivered a sunny day and nice clouds. We found some abandoned and storm-damaged homes and spent some time getting close to the structures, most likely bordering on trespassing. We had such a great time that we got a little carried away and lost track of time.

While we were gone, the guys and Mom watched part of a golf tournament on television. After eating such a large breakfast, Stan ordered salad takeout from Olive Garden for our light lunch. He ordered five servings and we still had tons of leftovers. Stan had to get back to Houston to care for our cats, so he left shortly before 3:00 P.M. The remaining five of us spent the rest of the afternoon visiting until happy hour. During happy hour, we shared some of our stories about the trials and tribulations that we had faced during the past few months. Unfortunately, Dad’s stories weren’t unique. Rhoda also relayed some disturbing stories about her father’s time in the hospital during the past year. We had a late dinner of tacos, which didn’t leave us any time for cards this evening.

Our friends left shortly after 8:30 P.M., after what seemed like a very short visit. I think that having our friends visit for the weekend was the perfect tonic for my parents, and for me. Happily, I would be back in Houston during the next weekend, and Stan and I would get to visit with our friends for two weekends in a row.

March 7. I was up early for work, but after having stayed up past my bedtime last night, I felt like I could have slept for another hour. Mom finally woke Dad after 6:00 A.M. After all of his physical activity during the weekend, he was pretty tired. I knew how much he preferred zipping through the house in the wheelchair and was pleased that was starting out the day with the cane and not the wheelchair.

Although I was pleased with his physical activity, I noticed that he seemed breathless when he ate, and he often had a runny nose after meals. If I remembered correctly, Kristen, Dad’s swallow therapist, had mentioned that a runny nose was a sign of aspiration. After watching him like a hawk, I decided that he seemed OK, so maybe I was worrying unnecessarily, which seemed to be my modus operandi.

Mom baked some pineapple banana bread today, and during lunch, we watched Peyton Manning tearfully retire from football. I put in another full day of work and was able to take a walk before lunch today. I stopped working early so that I could move a couple of our many floor mats to our office for Dad. As long as we had a supply of them on hand, we might as well use them to protect the carpeting in the office.

We had Sloppy Joes for dinner, but Dad ate only ½ of his sandwich. He had been doing pretty well with his intake the past few days and was drinking the Ensure and Nepro, so I didn’t pester him to eat more. After dinner, we played Oh Hell again, and I was tonight’s big winner.

By 8:30 P.M., Dad had crushed and consumed his meds with applesauce, and I was ready to call Stan five minutes later.

March 8. It was dialysis day for Dad and we were all up early today. The weather forecast didn’t bode well for today. Although stormy weather was in the forecast, Mom and Dad left for dialysis before the rain started. Shortly after Mom returned home, the weather turned bad with tornadoes in nearby Lampasas and San Saba.

When it was time to pick up Dad from dialysis, the weather was terrible, and I decided that I should make the trip to the dialysis center. The roads had terrible ponding and mild flooding the entire way. About a block from the dialysis center, the police had blocked the road and I had to go around deep water by traversing a parking lot. When I arrived, Dad said that he was relieved and glad to see me. By the time that Dad was ready to leave, approximately 30 minutes had elapsed. When we walked outside, I was amazed to see that the rain had stopped and the sky had cleared. As I drove back to the house, I could not believe how much the water had receded. I could only describe how flooded the streets had been because there was no evidence of the terrible conditions that I had countered during my trip to pick up Dad.

When Dad had arrived at the dialysis center, he weighed 69.1 kg (152 lb). After 1,400 ml of fluid was removed, he weighed 67.7 kg (149 lb). He had eaten quite well during the weekend, and I was relieved that he had not retained more than the usual amount of fluid.

I worked until 4:30 P.M. and then picked up my film camera and walked about a ½ mile down my parents’ street. When I returned, Dad was at the bar, preparing a drink for my mother. He then took his soft drink and walked into the sunroom where Mom and I would join him in a matter of moments.

It was then that we heard the sound of trouble. Neither Mom nor I witnessed what happened, but we think that Dad fell while stepping into the sunken sunroom. He hit his mouth on the wicker furniture that held Mom’s collection of African violets. He and a few violets were damaged, but nothing too serious on either front. His lip was pretty bloody, and we fetched a cold compress for him to help control the bleeding and swelling. It was then that we noticed the dandy skin tear on his leg. Fortunately, we still had ample first aid supplies. I bandaged up his leg and cleaned up his lip. For a few days, he would look like he had been in a fistfight.

After dinner, I showed Mom and Dad how I dispensed the pills in the two-week pill organizer. It was 8:00 P.M. when we were finished with that activity, but Dad wasn’t ready to go to bed until we played a game of Oh Hell.

March 9. The weather was pretty bad overnight. My bedroom had windows on three sides and the thunder and lightning woke me up and interrupted my sleep during most of the night. I might have fallen back to sleep had the pill alarm not gone off in the kitchen at 12:52 A.M. I had purchased the reminder clock to help Dad remember when to take his pills. My parents didn’t like the clock, and I’m pretty sure that I’m the only one who was disturbed by it. I had set the alarm time correctly, but the clock time was off by 12 hours.

Dad’s leg bled some overnight, so I had to bandage it again this morning. I worked until it was time for us to go to the clinic at S&W to meet with the fistula surgeon, Dr. Jaffers.

During Dad’s last plan of care meeting, we had all decided that Dad would have the graft procedure, which uses artificial tubing and not the patient’s vein. However, Dr. Jaffers convinced us that we should take the fistula route. If he decided during surgery that the graft would be the better option, he would fall back to that choice. His assistant offered us two dates for the surgery: March 25th or April 1st. Because the available time on the March date was in the afternoon, we thought that we should go with the April 1 option. Besides the fact that I don’t believe in scheduling surgery for the afternoon, Dad didn’t recover well from anesthesia. I wanted to ensure that he could spend a few hours at the hospital if he experienced delirium or hallucinations. March 25 was also Good Friday. If Dad experienced side effects from the anesthesia or didn’t feel well two days after surgery, he would not be able to attend church on Easter.

This surgery was a big deal, or at least it was for me. Dr. Jaffers would surgically connect an artery to a vein in Dad’s left arm, which would then be used to remove and return blood during dialysis. When the fistula was cured, Dad would have the dialysis port removed, enabling him to shower and swim without protection. Dad wasn’t thrilled that he would be stuck with two needles three times a week or the fact that this procedure implied that he would need dialysis for the rest of his life. However, the fact that he could have the surgery was a sign that he was getting stronger.

By the time that we got home, it was well after 1:00 P.M. By the time that I finished packing for my trip home, ate a quick lunch, and reviewed some of the medical tasks with Mom, it was after 3:00 P.M. I finally left for home at 3:20 P.M. The weather between Temple and Houston was miserable, but the traffic wasn’t bad until I got about 10 miles from home. By the time that I finally arrived home at 7:00 P.M., I was good and tired and very glad to see Stan and my kitties.

Transitioning from sick room back to bedroom

Published on February 20, 2018February 19, 2018 by mellowdee551 Comment

February 22, 2016. After all the excitement of going to church yesterday, today seemed almost boring, but in a good way. Dad didn’t seem to have much of a cough this morning, and for a while, I thought that we had vanquished his congestion. His cough came back sporadically during the day, but it seemed like we had turned a corner.

Another normal activity returned today when Mom attended her book club with her good friend Marilyn. I was thrilled that she was able to get out of the house and visit with her friends. When you’re in caregiver mode, your new normal world becomes very small, and it seems almost strange to return to your former normal life.

While Mom was away, I acted as Dad’s spotter while he made three trips up and down the front steps with his walker. He appeared fearless, but my heart was firmly planted in my throat. It was all I could do to keep my hands off of his shirt, although I’m pretty sure that I did grab the back of his shirt a couple of times. It probably didn’t do much for him, but it made me feel like I could save him from a fall. Fortunately, I didn’t have to test that theory.

Brenda had been working with him to be independent with a cane. Up until now, he had used his cane and walker when he was away from the house but relied on the wheelchair when he was at home, saying that he could move faster with it, which was true. He practically zipped through the halls in that wheelchair. The aides had commented on how well he handled the contraption. Michell had marveled at how the walls held no telltale signs of a wheelchair in residence. Kathleen, the physical therapist, had commented that Dad was the opposite of most of her patients, who used wheelchairs away from home and canes and walkers when they were at home. We were expecting weekend guests within the next couple of weeks, which might have inspired Dad today to get out of his wheelchair and spend more time walking with his walker and cane when he was at home.

While Dad was feeling adventurous, he wandered into the pantry to get a can of fruit. He stooped just a bit too low and struggled mightily to get up. I wasn’t in the best place to help him, and he was pretty winded when we finally got him up and out of the pantry. We agreed that he was not quite ready for knee bends.

After I logged off from work, I prepared a casserole for our dinner. While waiting for dinner, we enjoyed our happy hour together and watched the news.

We played a three-handed game of Oh Hell, and Dad won. Mom was a little shaky on threading the tubing in the Kangaroo pump, but she handled the meds like a pro.

February 23. Today marked the 148^th day that Dad had been home from the hospital. He had now been home as many days as he had been hospitalized. A month or so after Dad returned home, I had had a conversation with our friend Adan about what to expect regarding Dad’s recovery time. I had asked if Dad would require one day of recovery for each day of hospitalization, and Adan had said that he thought we might be looking at a 2:1 ratio. Dad wasn’t close to where he was when he entered the hospital some 236 days ago, but I suspected that Adan was correct in his assessment. Because I didn’t want to discourage him, I didn’t want to tell Dad that he was merely at his halfway point to being recovered. He seemed to be pushing himself to resume his former life.

We were all up early—some of us (Dad) earlier than others. Usually, because of the baby monitor resident in the master bedroom, whenever Dad woke up, I also woke up. Last night, after a relatively early night for all of us, I had slept soundly, even through a hard rain and a thunderstorm.

Mom fixed Dad his typical breakfast of Cream of Wheat and then drove him to dialysis. Fortunately, the rain had stopped before they left. During dialysis, Dad had 1,900 ml of fluid removed. Our routine had started to settle down, which enabled me to put in a full and uninterrupted day of work. During my lunch break, I was able to get out of the house for a walk, which turned out to be a short one because of the cold and windy weather. I’m more of a fair-weather walker.

Mom and Dad were able to take a nap after lunch. When we finished playing cards at 7:30 P.M., the three of us were tired and ready to call it a day. By 8:00 P.M., Mom had administered Dad’s meds, and I was on my way to my room for my nightly call to Stan.

February 24. Dad woke up around 3:00 A.M. and asked if he was still tied up. Mom disconnected him from the Kangaroo pump so that he could use the bathroom. She then told him to go back to sleep, which he did, sleeping until 6:00 A.M.

Kathleen, the physical therapist, called and said that she would arrive to assess Dad’s progress sometime between 11:00-11:30 A.M. I was looking forward to her approving Dad for another 30 days of physical therapy. When she arrived at 11:15 A.M., she watched Dad walk with his cane and told us that Dad was doing great, so great that she was discharging him from physical therapy. With this announcement, Dad had now been discharged from home care, occupational therapy, swallow therapy, and now physical therapy. For better or worse, we were now truly on our own. Yay?

After lunch, Dad and I went grocery shopping at Wal-Mart, and by the time that we returned home, we walked over 15,000 steps for the day. He had his walker with him, but I had him push the cart, which gave him some stability. After we got home and brought in the groceries, he and Mom went back out for more groceries, this time to Sam’s.

Dad did a lot of walking today, probably more than most people, but he still needed to exercise to build his strength and improve his balance, but he would shut down the conversation when I tried to broach the subject with him.

When we were getting Dad ready for bed, I checked his pill box and discovered that he had not received any meds since last night. Until the dispense of meds became second nature for Mom, I would have to keep a more watchful eye on Dad’s meds.

February 25. Today I was more worried about Mom than Dad. With the aides gone, she had more responsibility. I didn’t want to assume all of the work of the aides because I wanted to ensure that Mom could tend to Dad during my periodic trips to Houston. But now, it seemed that the extra work was beginning to take its toll on her, and for the first time, I thought that she looked frail.

After breakfast, she insisted on going to Penny’s to buy linens for the new bed. While she was gone, Dad and I talked about him assuming more responsibility for his care. So that Mom would not need the extra burden of administering his medications, I proposed that Dad prepare his medications and then he and Mom could administer the crushed and diluted cocktail in his G-tube, and he agreed. I also got him to agree to drink one Ensure and one Nepro a day, which would provide him with 775 calories. This base of calories would help to ensure that he consumed the calories he needed to add some much-needed meat to his bony frame.

The three of us watched the Republican debate. My parents hung in until 9:00 P.M. It ended at 10:00 P.M., so this was a late night for me. When they were getting ready for bed, Dad gave himself his nighttime meds. Mom had had a bad cough during the evening and while we played cards. Before she went to bed, I gave her a breathing treatment. Thank goodness that Dad’s prescription provided us with more saline and albuterol than one person could use.

February 26. I was up early and worked until Dad came into the office. Mom had not seemed well yesterday, and he was worried about her. While we were talking about her, she walked into the kitchen all perky, looking like she was ready to take on the world. She was like a walking testimonial for the benefits of a good night’s sleep. Although I had worked for a bit while my parents were still sleeping, I had actually taken the day off from work. We had a busy day planned, and Mom was ready to get started.

Right after breakfast, we hit the chores like field hands. I quickly deflated the inflatable bed, and at 8:15 A.M., a guy from American HomePatient arrived and picked up the hospital bed. Unfortunately, he did not take the mattress, so I moved it to a back room in the house. Evidently, they can’t reuse mattresses and they won’t pick up anything that they can’t give to another patient. We were hopeful that we could find someone who would take a mattress off our hands.

Now that the master bedroom was bed-free, we cleaned, vacuumed, and shampooed the carpeting. Once again, I said a silent thank you to my husband for purchasing the floor mats to cover the bedroom floor. I’m positive that the carpeting would have been ruined otherwise.

While we were waiting for the carpeting to dry, Dad and I made another trip to Wal-Mart. After lunch, the three of us decided to take advantage of some free time, and we napped for about an hour. After we woke up, we did a bit more cleaning before the Ashley Furniture truck arrived at 4:00 P.M. After they assembled the bed, they were gone in a flash. We then spent 45 minutes struggling to put the mattresses inside of the mattress covers. We eventually triumphed, but the experience was aggravating, and I’ll never buy one of these beds for myself. We were finally finished manhandling the mattresses at 5:15 P.M., and I was good and ready for happy hour.

During the day, Dad drank all but about 2 oz of the Nepro/Ensure mix, and he gave himself his meds.

After making the bed, Mom rearranged some of the medical accessories in the bedroom so that it looked more like a bedroom and less like a hospital room. Among other things, the baby monitor was removed from their room, which was a huge milestone for me. For the past 151 days, I had barely slept while I monitored Dad’s sleep and nighttime emergencies and needs. With the monitor gone, I felt like I was experiencing some separation anxiety.

February 27. After a day of physical activity, we all slept well, and we all slept for at least seven hours. The morning was uneventful and smooth, but I forgot to weigh Dad before he and Mom left home for the dialysis center.

During dialysis, Dad had 1,600 ml of fluid removed, but he probably should have had more removed. It was ironic that for so many months I had been critical that the nurses were removing too much, yet now I had the opposite concern.

A couple of days ago, Dad said that he would drink Ensure for lunch and the Nepro throughout the day. Today he back-pedaled on our agreement and drank the Ensure but not the Nepro.

Mom and I fixed up their bedroom and spent some time putting together some other rooms of the house. The entire house was looking more like a home and less like a hospital. Their bedroom had had the most significant transformation, and only a set of shelves with some medical supplies gave any indication of how the room had been used for the last 21 weeks.

Stan arrived shortly after Mom and Dad returned from dialysis. Dad took a nap after lunch and then he and Stan started up the grill for dinner.

With all of the transformational activities during the past few days, it seemed like we needed a family photo to make the milestone. Happily, everyone was receptive to the idea.

Dad won at Oh Hell. I was able to get 1,400 calories in him today, so I felt like a winner too.

More milestones and fewer nets

Published on February 13, 2018February 13, 2018 by mellowdee551 Comment

February 18, 2016. I knew that Dad had had a very restless night. Because his bed constantly creaked while he fidgeted, I hadn’t had much sleep either. When he woke up at 4:00 A.M., he said that he hadn’t slept much, and I had a pretty good idea why. Today’s trip to dialysis would be different from any other trip because not only would he not have an aide to accompany him, he wouldn’t have an aide stay with him. In addition, Mom would drive him to and from dialysis. I had also spent a few worried minutes awake because I was concerned that he would try to get out of bed. I didn’t realize it at the time, but at 3:15 A.M., he did get out of bed by himself and got into the wheelchair.

Shortly after hearing the wheelchair, I got up, dressed in my scrubs, and logged on to work. It was then that I noticed that Mom was still sleeping and had not helped Dad out of bed. Mom woke up shortly before 4:00 A.M. It was a semi-hectic morning on our first dialysis day without an aide, but Mom and Dad were on their way to the dialysis center in plenty of time for Dad’s 7:00 A.M. appointment.

After Mom returned home, she and I ate breakfast and then she started baking a batch of English muffins. Unfortunately for her, she miscalculated how long the baking would take, and she realized too late that she would not get to the dialysis center at my parents’ agreed-upon time. As she feared, she arrived a few minutes late. Dad was royally annoyed, and he complained ad nauseam about her tardiness. He finally dropped the subject and said that they would have to adjust their schedule. During dialysis, only 1,400 ml of fluid was removed, which seemed low to me. Dad still had a bad congestion, which made me nervous about his fluid levels. I told him that I planned to take him to dialysis this coming Saturday.

During lunch, Dad started backpedaling on his agreement to drink Nepro with his lunch. If he didn’t consume enough calories during the day, he’d have to consume them during the night while he slept. His excuse for not drinking the Nepro today was an upset stomach. After lunch, he took a nap and slept for about 90 minutes. Mom was also tired and fell asleep while sitting in a glider chair in front of the television. I think that they both got some of their best sleep while sitting in front of the television.

When she woke from her nap, Mom called the furniture store and ordered their new bed and scheduled it to be delivered next Friday, eight days from today. My parents had shopped at three stores and had finally settled on a split king-sized bed from Ashley Furniture. Because Dad was supposed to sleep at a 30% incline, they needed a bed that enabled him to sleep on an incline while she slept flat. Before the bed arrived, we’d have to get rid of the hospital bed and move her twin bed back to the guest room.

I stopped work in time for our happy hour and gave Dad some Tussin to help ease his congestion. Although his congestion sounded bad, his temperature, oxygen saturation, and heart rate were all good. We had a relatively light dinner of leftovers and sorbet. Although three-handed Oh Hell isn’t as much fun as when we have more players, Dad wanted to play, and I won.

After the card game, we headed to the bedroom. While Mom prepared Dad’s night time meds, I gave Dad another breathing treatment. We finally got our first aide-less day under our belts by 8:30 P.M. Whew!

February 19. The day started with a knock-down drag-out argument between Dad and me. We argued over his nutritional needs, Nepro, and the amount of fluid to be removed during dialysis. When Mom left the house in tears, Dad and I sat down and had a rational discussion. He didn’t understand dialysis or his body and only partially heard what was said around him. We finally agreed that when I took him to dialysis tomorrow, I would talk to the nurse about how much fluid to remove.

Brenda arrived at 9:30 A.M. for Dad’s physical therapy session. She put him through the paces but commented to me that she was frustrated that he didn’t practice any of the exercises between their sessions. She and I both hoped that Kathleen would extend his time in physical therapy during his upcoming evaluation. Although his strength was improving, we felt that he needed more therapy.

At 11:30 P.M., Janet stopped by for Dad’s final occupational therapy session. Unlike the physical therapy exercises, Dad did practice some of these exercises between sessions because Mom liked to do them with him.

After eating lunch, Dad took a short nap before Kristen arrived for her final swallow therapy session with him. He presented her with a list of foods that he wanted to eat and asked her if he could eat them. Most of the items were planted firmly in the NO column, but he kept trying to get her to agree to rice and nuts.

Now that I knew when my parents’ new bed would arrive, I needed to ensure that we’d be rid of the hospital bed slightly before the arrival of the new bed. I called American HomePatient and left a message with Holly, the branch manager, and told her that we needed to have the bed picked up first thing in the morning on February 26.

During Dad’s plan of care meeting, Dr. Issac said that he would order a referral for Dad to see Dr. Greg Jaffers about fistula surgery. I wanted to get an appointment with the surgeon as soon as possible and texted Sue, the dialysis nurse practitioner, to check on the status of the referral. She replied that Dr. Jaffers’ office would contact us when they received the referral.

After the therapists left, Mom did some shopping and Dad wrote up an article about the Locke Academic Foundation. My father funds a scholarship for political science students at Colorado Mesa University, and he sent some additional information about the scholarship to Shell, his former employer who matches his funding. While the house seemed to be running with a steady rhythm, I worked until 5:00 P.M., which was when I stopped for our happy hour. Dad was still intent on eating peanuts, so I reminded him that for the time being, to reduce the risk of aspiration, he had to avoid eating nuts. When he said that he didn’t know what aspiration was, I was a little alarmed. I couldn’t understand how we could have come this far without him understanding what aspiration was, that it was a bad thing, and how it had nearly killed him.

We didn’t play cards tonight, and I’d be glad when Stan arrived tomorrow.

February 20. I took Dad to dialysis today. The nurse had suggested that they remove 1,600 ml of fluid, but I told her that I thought that his target dry weight was a bit high. His ankles seemed swollen, and I suggested that 1,800 ml might be a better goal, and she agreed.

After Dad was settled, I left the dialysis center and promised to return at least 20 minutes before the end of his session. He did fine during dialysis and didn’t cough until I came to pick him up. Stan arrived from Houston about 20 minutes after Dad and I returned home.

To begin preparing for the new bed, Stan and I moved the twin bed that Mom had been sleeping on from the master suite to the guest room. We then moved the inflatable bed from the guest room to the master suite for Mom to use until the new bed arrived. The bed wasn’t comfortable for long periods, but Stan wouldn’t be here next Friday when we had to clear out the master bedroom, and I wanted to take advantage of his brawn while he was here. Moving the beds now would enable Mom and me to more easily clean up the room in advance of the delivery of the new bed. I hoped that the inflatable bed wouldn’t be uncomfortable for Mom and that she would be able to get some sleep during the coming week.

I helped Mom set up Dad’s meds for the next two weeks, and the guys played a few hands of cribbage. As long as Stan was here, Dad seemed a bit more laid back.

After dinner, we played some more cards and monitored the primary election results on the television. In Nevada, Hillary Clinton won the Democratic caucuses and Donald Trump won the South Carolina Republican primary.

When Dad finally went to bed at 9:45 P.M., he said that he was feeling queasy and he was still pretty congested. I was worried that he might not feel well enough to attend church tomorrow.

February 21. I had high expectations for the day. Although we had stayed up a little later than usual, I had been able to sleep for more than seven hours, which was very unusual for me. However, the day seemed to take a turn for the worse when I entered my parents’ bedroom. Dad had a bit of congestion and he seemed to be in a crummy mood. His attitude was such that I fully expected him to back out of attending church again today.

I was relieved when the four of us got inside the car. I drove to the church and let everyone out close to the church entrance. The accessible parking spots were occupied and the parking lot was surprisingly full, so I had to park quite a distance from the church entrance. I joined my parents and Stan at our regular pew in the church. Soon after we arrived, our church friends who sat in the pew behind us arrived. When I saw Pastor Tom in the sanctuary before the service, I told him that Dad was with us. He stopped by our pew and welcomed Dad in true Tom style. He started the service with a big JOY and announced that after being deathly ill since May, Neal Locke was back. The congregation gave Dad a huge round of applause, and then Tom (jokingly) asked if Dad had brought his offering with him. After the service, many people approached Dad to welcome him back. Before we had left the house for church, Dad had said that he wouldn’t attend church again until he was better. After his warm reception from the congregation, he seemed willing to attend more often. My parents were very fond of this pastor, and before Dad’s hospitalization, my parents had rarely missed a Sunday in church. Getting Dad back to church seemed like another major milestone in his recovery.

When we got home from church, we spent a lot of time working out the arrangement of my parents’ bedroom. After Stan left, we watched the golf tournament, and I tried to get some work done. We spent most of the evening just talking. Dad’s congestion was practically gone, but he let me give him a breathing treatment before bed. Mom was getting better at administering the meds and tube feeds.

I finally got to bed at 9:10 P.M. After four days without an aide, we seemed to be easing into a routine.

Net photo by Tina Hartung on Unsplash