health care – Page 3 – Tale of Two Parents

So far, so good at the rehab facility

Published on July 31, 2018July 31, 2018 by mellowdee55Leave a comment

March 30, 2018. After spending most of the week with my parents, I was now back home in Houston so that I could spend the Easter weekend with my husband. I was pleased to learn that Dad had received physical therapy today. He had not received physical therapy every day at the hospital, so I hadn’t assumed that he would have therapy today. In the hospital, physical therapists didn’t work on the weekends, and I didn’t know if physical therapists worked on the weekends at the Cornerstone rehab facility. Having therapy today lessened the potential gap in his treatment. To ensure that Dad would reach his physical therapy goals in the targeted time, he needed frequent sessions. Significant gaps between sessions could slow his progress or cause him to regress. My parents and I were intent on Dad being able to safely leave Cornerstone within two weeks.

Shortly before 11:00 A.M., the case manager called me from Scott & White Hospital to tell me that Dad was still in the hospital but would be transferred to Cornerstone later today. She said that she had tried to reach my mother, but no one answered the phone. I told her that I was in Houston, but my mother was with my father at the hospital and that she could speak to both of my parents by going to his room. I was a bit surprised that she had not tried Dad’s room first. Even if my mother hadn’t been there, Dad would have appreciated knowing the details of his transfer.

Later today turned out to be noon, just an hour after she called me. The previous occupant of Dad’s semiprivate room had already been discharged, so Dad had the room to himself. I hoped that he would have a private room for a few days. He didn’t receive any physical therapy during the afternoon, so I was thankful that he had received therapy this morning at the hospital.

When Mom called me a little after 5:30 P.M., she told me that the day had gone very well and that Dad was determined to be fit enough to go home in five days. Mom’s enthusiasm and optimism about today’s events rubbed off on me, and I had a good feeling about Dad’s prospects.

March 31. I wasn’t sure what time Mom planned to leave home this morning for Cornerstone, so I called her mobile phone, hoping that she might have it with her. Mom usually kept her phone in her purse and had a difficult time answering it before the call was transferred to voicemail. I knew that Dad kept his phone on the bedside table, so when there was no answer, I tried his mobile phone number. As I had expected, Mom answered Dad’s phone.

I could hear a lot of background noise during the call, and Mom said that Dad’s room was a hubbub of activity. The occupational therapist and an aide were getting Dad ready to take him to the shower, which was located down the hall. Because of all of the distractions, I told her that I would call her later this afternoon.

When I called Mom at 5:30 P.M., she gushed praises about the physical therapist. Mom said that the therapist was kind but firm and that she did a great job with Dad. After spending an hour in physical therapy, my exhausted father returned to his room. I don’t know how much time he spent with the occupational therapist this morning, but if every day was like today, Dad just might be ready to leave in less than a week. I was very pleased that the residents of Cornerstone received therapy on Saturdays. Because tomorrow was Sunday and a holiday, I didn’t think that he’d receive therapy, but at least he would have only a one-day gap in his treatment.

April 1. Today was Easter Sunday, and I called Dad’s mobile phone as soon as I returned home from church. After four rings, the call went to voicemail. I called again with the same result. On my third attempt, I received a text from him, which had to have been the result of some fumbled fingers because he does not text. Now that I knew that he was there and most likely was holding his phone, I called again, and this time he answered. We talked for almost 25 minutes. He was in a great mood. He said that Mom had been there for a couple of hours before she went to church. The Cornerstone staff had delivered bags of Easter candy to the residents, and he proceeded to itemize the contents of his bag during our call. When he found the six-inch Hershey bar, he said that he would start with it. While we were talking, a caregiver arrived with his meds. He told her that he was on the phone and would take the pills later. In jest, I told him to take the pills with his candy.

After all of the effort that it took to convince him to enter this facility, I was thrilled with his positive attitude and good mood. We had a great talk, but when his lunch arrived, he was done with me. Evidently, Cornerstone’s food was pretty good too.

Mom called me a couple of hours later from Dad’s room. Dad was in physical therapy, and because my parents’ neighbors said that they might visit this afternoon, she remained in Dad’s room during his session. While Mom and I were talking, an aide wheeled Dad into his room. I was thrilled that he had had therapy on a Sunday, and Easter Sunday at that. At the end of our call, I was feeling good about this facility and Dad’s care. It seemed that his stay at the Cornerstone facility was going to exceed my wildest expectations.

Maybe rehab won’t be so bad after all

Published on July 24, 2018July 23, 2018 by mellowdee55Leave a comment

March 29, 2018. Mom left home for the hospital shortly after 8:30 AM., and I followed her in my car about 15 minutes later. By the time that Mom arrived at Dad’s room, he had been visited by Mike (today’s physical therapist) and a nephrologist. According to Dad, Mike had had him walk around the bed. He seemed to like Mike and was eager to have another session with him.

When I arrived, Dad was finishing his breakfast of hot cereal, pancakes, eggs, and a few cups of apple juice. Dad looked much better today and had a healthy appetite. He was still a little confused about the dreams and hallucinations that had occurred during the night, but he seemed to be in a good mood. Unlike Dad’s previous surgeries, I had been able to warn him about the potential for hallucinations and confusion after this surgery. I was encouraged that he shared his events with me so that we could sort out what was real. During the day, he asked me about a cat that was sitting in the corner of the room. Although it seemed real to him, he believed me when I told him that there was no cat in the room, although he could still see it.

The morning’s happy mood took a nose dive when Alisa, the nurse, tried to give him a doxycycline capsule. He insisted that he would not take this pill because it had made him vomit. Alisha said that she would give him a Zofran for nausea to take with the antibiotic. I reminded him that he had had problems with this antibiotic when he took it on an empty stomach, but he had just eaten breakfast. He eventually calmed down and agreed to take it, but I was not hopeful that he would take the second pill after dinner.

Sara, today’s physician’s assistant, stopped by at 10:15 A.M. to tell Mom and me that Dad could be discharged to Cornerstone as early as today. Mom told her that we wanted to meet with a Cornerstone representative and tour the facility before Dad was discharged. Sara thought that our request was reasonable and would relay our request to the case manager. When I asked her if we were responsible for Dad’s meds, she said that the hospital would send Dad’s list of medications to Cornerstone and that they would obtain them through their pharmacy.

At 10:30 A.M., I went to the cafeteria to get some coffee for Mom and me. When I returned, Dad was in the bathroom. Being able to get out of bed to use the bathroom was a significant and welcome milestone after hip surgery. With his movement at glacial-speed, the short trip took quite a bit of time, but Carrie, the aide, eventually got him back into the bed at 11:10 A.M. After watching the process that was required to get Dad from the bathroom to the bed, Mom was convinced that we had made the right decision to have Dad discharged to a rehab facility. Dad had insisted that he could have out-patient therapy, but Mom and I together could not have safely transferred him from home to the rehab facility.

Shortly after Dad was settled back into his bed, Dr. Bolanos and Dr. Duran, the nephrologist, and her entourage arrived. Dr. Duran said that Dad’s kidneys were back to where they were before this surgery, whatever that meant. Dad hadn’t seen a nephrologist or had a blood test since early December, so I wasn’t convinced that his kidneys had been in great shape when he entered the hospital. I knew several of the Scott & White nephrologists and was disappointed that one of them was not working at the hospital this week.

When the nephrologists left, Dr. Bolanos spoke with Dad again about rehab, and he was still very resistant to her recommendation and dismissed her reasons why he should have in-patient therapy, insisting that Mom needed him at home. After a few minutes of unsuccessfully trying to change his mind, she left the room.

After the doctor left, Dad started talking about how he wanted to extend his hospital stay so that he could get the physical therapy here that he needed before he went home. I explained to him that his insurance didn’t allow patients to extend their hospital stays for physical therapy. I also reminded him that hospitals were germy places and that he didn’t want to stay any longer than necessary. I added that the hospital wanted to discharge him either this afternoon or tomorrow morning and that there was no way that Mom could take care of him. Because Mom seemed to be Dad’s primary concern and his stated reason for not going to rehab, I had told her that it was up to her to convince him to go to rehab. When she started telling him about her appointment at Cornerstone this afternoon, I excused myself and went to the waiting room so that they could talk in private.

Shortly after I returned to his room at 11:45 A.M., Brenda, the occupational therapist, and Carrie, the aide, arrived for a therapy session with Dad. The goal of an occupational therapist is to prepare the patient to become independent in the job of daily living, and today she wanted to get him into the bathroom. Brenda and Carrie had him practice sitting on and standing up from the commode. She also had him stand at the sink and brush his teeth.

During Dad’s therapy session, Mom told me that he had agreed to go to Cornerstone and complete his therapy as fast as he could. The doctor and therapists had estimated that he would require two weeks, but he planned to be ready to come home in half that time. I was thankful and encouraged by his change in attitude. I left the room to find Dr. Bolanos to let her know that we were all on board with his rehab plan at Cornerstone.

I needed to return to Houston today, but Mom wanted me to join her for her appointment with Marie at Cornerstone. Because we wanted to spend as much time with Dad as possible, I picked up a soggy sandwich from the cafeteria for us to split and eat in Dad’s room. At 1:00 P.M., I woke Dad from a nap to tell him goodbye. It was a good goodbye, and I felt optimistic about his prospects. Mom and I left the hospital together and drove in separate cars to Cornerstone for our 1:30 P.M. appointment. After Mom signed a huge stack of papers, Marie provided us with a tour of the facility that ended at what would be Dad’s semi-private room. The current occupant was due to be discharged tomorrow morning, which meant that Dad would have the room to himself for some time. Everybody was very nice, and it seemed like a nice place. I hoped that Dad would do well here.

After our meeting, Mom returned to the hospital and I drove to my parents’ home, where I worked for another hour before driving to my home in Houston. Five days ago, Mom called me with news of Dad’s fall. Because of his severe osteoporosis, I feared the worst for him. With Dad seeming to be inspired to get back on his feet, I now felt optimism that I hadn’t thought possible.

They say that he has to go to rehab, but he says No.

Published on July 17, 2018July 17, 2018 by mellowdee55Leave a comment

March 27, 2018. Because I was concerned about how Dad fared during his first night after surgery, I didn’t sleep well and woke up just before 2:00 A.M. I hoped that he had slept well and that he had not tried to get out of bed during the night. Mom and I didn’t have much of an opportunity to visit with Dad yesterday after his surgery, but I had warned him that he might experience some confusion after his surgery. I knew that I would be spending a few hours at the hospital today, so I set up my computer shortly before 5:00 A.M. and worked for about four hours. Thirty minutes later, Mom and I arrived at the hospital.

When we entered Dad’s room, we found that a nurse and a couple of nursing students were turning Dad in his bed. Until patients can get out of the bed, they must be turned every few hours so that they don’t develop bed sores. After Dad was resituated in his bed, Dr. Bolanos entered the room. Within moments, the two of them were arguing about Dad’s antibiotic suppressant drug. He insisted that the doxycycline gave him an upset stomach and that he hadn’t taken the pill in six months. She suggested that he take the antibiotic with food or with Zofran, which would prevent any nausea. He agreed but said that he would take only one pill a day and not the prescribed two pills. Fortunately, she avoided the subject of rehab during this visit.

Although Dr. Bolanos had steered clear of the contentious subject of rehab, Kim, the physician’s assistant, took the bull by the horns when she stopped by Dad’s room. While she was there, she described the different types of physical therapy available to patients and the patient requirements for each option. For Dad, she reinforced Dr. Bolanos’s recommendation for in-patient therapy at a rehab facility. As before, Dad insisted that he had to go home and take care of his garden and wife.

Shortly after lunch, Amy, the occupational therapist arrived and had Dad stand with the walker. Before Amy left the room, Brooke and Lisa, the physical therapist and her assistant, arrived. They had Dad stand up and sit down and then sit in a chair. While he was enjoying being out of bed, Pastor Tom entered the room. While Tom was there, he spoke of the many benefits of rehab. The pastors in that church always seemed to answer my prayers. Before Tom left, he urged Dad to get well quick because he needed a Christian in the church, which was a running joke between them. Tom had a very busy schedule this week, and Mom and I greatly appreciated his taking the time for a visit.

At 3:00 P.M. I returned to the house so that I could get in a couple more hours of work. I was feeling the effects of my sleepless night and drank coffee to keep myself awake until 5:00 P.M., which was when I logged off for the day. While I was working, my parents’ neighbor, Jane, dropped off a Cobb salad that she had purchased for us while she was in Austin. Mom and I devoured this much-appreciated gift for dinner.

March 28. Dr. Bolanos stopped us in the hall as we approached Dad’s room. She told us that Dad was very confused. He thought that he was at home and he was also having hallucinations. Also, during the night, he had gotten out of bed, and the nurses had found him on the floor when they responded to the bed alarm. To help prevent him from injuring himself, they exchanged his bed for one that could be lowered within inches of the floor. As if this news wasn’t enough, she added that Dad was argumentative and was still fighting the notion of going to rehab.

When we entered Dad’s room, we encountered chaos. Dad was eating breakfast and arguing with Alisha, an aide who was trying to take his blood pressure, which was required before he could have his morning meds. He insisted that he would not take the meds, and wanted her to leave. Steve, the electrical technician, was also in the room, trying to repair a problem with a spastic call light and oversensitive bed alarm. It didn’t help matters any that Steve and a nurse were discussing the problems with the system.

I asked Alisha if she could leave so that Dad could finish his breakfast, and she agreed to come back later. As soon as she left the room, another woman entered the room. She introduced herself as Lisa, the nurse manager, and asked if we were having problems. I told her that the room had been like a sea of chaos when we arrived, which was not helping my father’s anesthesia-induced confusion or his mood. She took control of the situation and orchestrated the activities of the nurses, aides, and Steve until a relative calm settled over the room. The only challenge, which remained for a few hours, was the bed alarm and call light. Dad’s new bed did not have a built-in bed alarm and an attached call light. The nurses were using a chair alarm and the rigged-up system was somewhat faulty. I finally had Steve turn off the maddening bed alarm, promising to have the nurse turn it on when Mom and I left.

Adding to the parade of people who dropped by was the case manager, who asked whether she should start looking for a rehab facility for Dad. Dad didn’t hear her question, and I quickly ushered her out of the room. Rehab was still a touchy subject, and I didn’t want us to launch into another argument in front of the case manager. I returned to the room and told Mom that she needed to see the case manager in the hall. While Mom was gone, she signed the appropriate paperwork to set the discharge process in motion. While Dad had been in surgery, I had asked Pastor Tom about Cornerstone, and he said that he thought (based on his visits to many rehab facilities) that it seemed like a good facility. We hoped that Cornerstone, which was within a couple of miles from my parents’ home, could accommodate Dad.

Mom and I had hoped to be with Dad during his next physical therapy session, but we hadn’t heard anything about today’s schedule. To ensure that we didn’t miss the session, I went to the cafeteria to buy lunch for Mom and me. While Dad enjoyed a lunch of pork chops, Mom and I ate yogurt and fruit. Dad admitted that his lunch was pretty good, which was practically an enthusiastic endorsement of the hospital food. We finally asked the nurse about Dad’s schedule, but she said that there was nothing on his chart today about him having physical therapy. With that disappointing news, Mom drove me back to the house so that I could get back to work.

Shortly after Mom returned to the hospital, Pastor Tom returned for another visit. Tom told Dad how rehab had made a difference in his recovery when he broke his ankle after jumping from a plane while he was in the army. Although Tom’s words probably fell on deaf ears, I felt like we should have baked Tom a pie for trying to sell Dad on the notion of a rehab facility.

Shortly before I logged off from work, I answered a phone call from Cornerstone. Marie was calling to inform us that Dad had been accepted and that she wanted to make an appointment with Mom so that they could finalize the arrangements for his two-week stay.

Now, all we had to do was get Dad to agree to the transfer from the hospital to the Cornerstone facility.

Back at Scott & White Hospital. Oh, joy.

Published on July 10, 2018July 16, 2018 by mellowdee552 Comments

March 25, 2018. After last night’s disturbing phone call from Mom about Dad’s fall, I wanted to get an early start to Temple so that I could be there during Dad’s surgery. I was up by 5:30 A.M., called Mom 45 minutes later to let her know that I was coming, and left home at 7:40 A.M. Because of my early departure, and some good highway luck, I arrived at my parents’ home at 10:15 A.M. I quickly unpacked my car, drove to Scott & White Hospital, and made my way to room 566 in the south tower.

I had just missed the surgeon, who had stopped by to tell my parents that barring any emergency surgeries, Dad’s surgery was scheduled for that afternoon at 1:20 P.M. Shortly after I arrived, Dr. Karla Bolanos, Dad’s attending physician for the week, stopped by to visit with Dad. Dad was very charming and witty, giving her the impression that he was a cooperative patient. At this stage of the process, he actually was very cooperative because he had no idea what was in store for him.

The doctor said that Dad would have his first physical therapy session and evaluation the day after his surgery. Following the surgery, he would remain in the hospital for 2-3 days and then move to a rehab facility for two weeks of rehab. It was at this point in the conversation that Dad balked and said that this plan didn’t work for him. He had no intention of going to rehab; he was needed at home. Unfortunately, Mom seemed to agree with Dad. In an attempt to sell my parents on the notion of rehab, I related the story of their friend Sally and her experience with rehab after her hip-replacement surgery, but my parents were not swayed.

Shortly after Dr. Bolanos left us, I left the room to call Stan and my friend Rhoda, both of whom wanted an update on Dad’s condition. On the way to the lobby, I saw the doctor at the nurse’s station and spoke with her about Dad’s diuretics, his swollen legs, and I requested that she order an infectious diseases specialist to check Dad to see if he still needed the antibiotics to suppress infection in his lungs. She appreciated knowing about the diuretics but said that Dad would need to take suppression antibiotics for the rest of his life. Furthermore, she said that he needed the antibiotics because of his new heart valve. It seemed to me that he needed the antibiotics for a couple of good reasons. Because antibiotics can affect the kidneys, I had hoped that he could quit taking them, but the doctor dashed that hope.

When I finished making my phone calls, I returned to Dad’s room. Dr. Bolanos returned to the room a few minutes later and told us that they had noticed a spot on Dad’s heart that looked like a clot. Before they could operate on Dad’s hip, they would need to run some tests, which were scheduled for tomorrow. By now it was 12:30 P.M., and Mom and I were hungry and decided that we would leave Dad for an hour and go home for lunch. When we returned to Dad’s room, because his surgery was rescheduled for tomorrow, his NPO restriction had been lifted, and he was eating lunch and complaining about the food. Some things never changed.

At 3:30 P.M., an imaging tech arrived with an ultrasound machine to scan Dad’s legs for blood clots. She couldn’t tell us anything, and we assumed that we’d hear something soon from the doctor.

Shortly before 5:00 P.M., Mom and I left the hospital for home, having not seen any medical providers after the imaging tech left the room.

March 26. Mom and I arrived at Dad’s room shortly after 9:00 A.M. Dad said that he had been told that his surgery was scheduled for 1:20 P.M. Dr. Bolanos stopped by the room and told us that Dad was scheduled for a VQ scan at 10:30 A.M. I had never heard of a VQ scan, but I learned that it evaluates the circulation of air and blood within a patient’s lungs. The transportation tech arrived 10 minutes before the scheduled time and transported Dad to the procedure location. Not knowing how long he would be gone, Mom and I started getting antsy when he hadn’t returned by noon—especially because he was scheduled for surgery at 1:20 P.M. We didn’t want the surgery rescheduled for tomorrow. We also didn’t want to leave the room for lunch and risk missing the doctor.

Dad was returned to his room at 12:15 P.M., and a couple of minutes later, we were told that he was still scheduled for surgery today. Less than 30 minutes later, another transportation tech arrived to take Dad to the OR prep area. Mom and I were both allowed to accompany him. Dad wasn’t in favor of my coming, but I wanted to speak with the anesthesiologist. Dr. Daniel Stahl, the surgeon, stopped by to tell us about the surgery. He said that Dad would need three pins and that unless they found something different from what they had seen on the x-rays, the procedure should take less than two hours.

I told the anesthesiologist that following Dad’s previous two surgeries, he had had a heck of a time dealing with the anesthesia. For three to four days, he had been very confused and had had hallucinations of animals, insects, and water in the room. The anesthesiologist said that he had Dad for his second surgery in May 2015. He said that if this surgery lasted no more than 90 minutes, he could use a spinal tap. Dad would be aware of what was happening, but he wouldn’t have any pain, and he would not suffer the after-effects of the anesthesia. He said that he would confer with the surgeon and try using a spinal tap if we agreed that was the route that we wanted to take. He thanked me for the update on Dad’s history, and Mom and I hoped that we had found a solution to Dad’s post-op dramas. While we were speaking with the anesthesiologist, the nurses were having a heck of a time finding a vein so that they could type and screen Dad’s blood.

When the nurses had finished drawing Dad’s blood, Mom and I made our way to the OR waiting room. After waiting for about an hour in the freezing-cold room, we were pleasantly surprised to see Tom, my parents’ pastor. I don’t know how he found us, but pastors seem to know their way around hospitals. We had a nice visit with him, and during our discussion, I mentioned my concern about Dad’s reluctance to go to rehab. I hoped that Pastor Tom would be able to have a guy-to-guy talk with Dad sometime before he was discharged from the hospital. After talking with Mom, I learned that part of her reluctance to send Dad to rehab was because of the promise that my parents had made years ago to not put the other in a nursing home. I explained to her that he would be admitted to the temporary resident section of the skilled nursing facility, not the permanent resident section, commonly referred to as a nursing home. I think that she felt somewhat better about rehab after our discussion.

Just a few minutes after Pastor Tom left us, the surgeon arrived to tell us that the surgery had gone well. Unfortunately, because of Dad’s spinal compression, the anesthesiologist was not able to use a spinal tap and had to use a general anesthetic after all.

Oh, joy.

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.

Showing off the miracle patient

Published on June 12, 2018 by mellowdee55Leave a comment

December 21, 2016. Dad had continued to progress well. Not only was he eating more, but he was also eating foods that I had assumed would be off limits for a patient who had been deemed a chronic aspirator. I recall a day in August 2015 when a pulmonologist fellow warned Mom and me that Dad would probably never be able to eat carrots and peas again, but we shouldn’t stop him from eating what he wanted, even if it killed him. And this guy was one of my favorite doctors. Not only was Dad now eating peas and carrots, he was also eating nuts and rice.

I contacted Adan Torres, who had been one of Dad’s speech therapists during his hospitalization and who had become a manager with Scott & White Home Care and Hospice, to ensure that he would be in his office today and able to take visitors. During our telephone conversation, I asked him if he knew who the attending physician at the CCH was this week. Happily, our favorite doctor and lifesaver, Dr. Randall Smith, was there. I had to admit that there were other doctors who I would have liked to see, if only to show them how wrong they had been about Dad. Fortunately, the universe was directing me to take the high road.

Dad and I arrived at Adan’s office shortly before 10:00 A.M. and spent more than 45 minutes visiting with Adan in his office. Dad didn’t have much memory of Adan, but he held a special place in the hearts of Mom and me. Adan marveled at Dad’s progress. A few weeks earlier, my parents had donated their unused medical supplies. Adan mentioned that when Dad had backed up his SUV and started unloading the donations, he called one of his associates to share the news of this once unlikely sight.

As the time approached 11:00 A.M., I wanted to get Dad across the parking lot to the CCH before Dr. Smith left the building for lunch. Before we left, I gave Adan some of my homemade biscotti to share with his wife and some cookies for his kids.

When Dad and I left Adan’s office, we drove across the parking lot to the CCH. As we walked into the building, the receptionist recognized Dad and me and remarked on how much better Dad looked than the last time that she saw him. She wasn’t just whistling Dixie: when we left the CCH on September 29, 2015, most of the personnel at the CCH didn’t hold out much hope for Dad’s recovery. When I told her that we wanted to see Dr. Smith, she mentioned that we might have missed him because she didn’t see his pickup truck in the parking lot.

While we waited to see if the doctor was still in the building, I asked the receptionist if we could see Marty, who was the case manager at the CCH. I had had somewhat of a rocky relationship with Marty during Dad’s two stays at the CCH. She had been very negative during about Dad’s prognosis and had not always treated my mother well, but in the end, she had pulled off a case-manager miracle during his discharge from the CCH. During our short visit in the CCH lobby, Marty told us that Dr. Smith was on a conference call that should be ending soon. Before she left us, I gave her some cookies for her daughters.

We had a fabulous 30-minute visit with the good doctor. He was thrilled with Dad’s progress and said that he looked great for an 88-year old, let alone someone who had been through a medical ordeal like Dad’s. He told us that seeing Dad inspired him and that he seldom had the opportunity to see patients after they left the CCH. Once again, Dad had no memory of this medical provider, but Dr. Smith had been the difference between life and death for Dad, and I will be forever grateful that God placed him at the right place at the right time.

December 23. My parents have a large vegetable garden on their acre lot. Dad had decided that he wanted to change the footprint of the garden, which was designated by cinder blocks and bricks. Stan and I didn’t want my parents to move the cinder blocks themselves, so we volunteered to help Dad with the garden, and today’s weather was perfect for the task.

Dad, Stan, and I created an assembly line in which Stan would place the blocks on the handcart, Dad would bring the cart to me, and I would reposition the blocks in their new location. In the period of an afternoon, we had changed the footprint of the garden. One side of the garden remained open because Dad needed to move large sections of dirt before placing the final bricks.

Two days later, on Christmas day, Stan presented Dad with a gift certificate to rent a Bobcat to finish the dirt-moving task.

February 25, 2017. The day that Dad would rent the Bobcat had finally arrived! Stan accompanied Dad to the rental company to pick up a Bobcat mini track loader. After successfully backing up the trailer and unloading the Bobcat, my two guys couldn’t figure out how to raise and lower the bucket. Fortunately, I understood how to read the documentation printed on the loader and was able to help them get started.

After a couple of hours of moving dirt and relocating the cinder blocks, the garden was well on its way to being ready for the spring planting. After missing the entire growing and harvesting season last year, Dad was ready to partake of another fruitful harvest.

Thanking those who helped the caregivers

Published on June 5, 2018June 6, 2018 by mellowdee55Leave a comment

August 2016. Throughout Dad’s ordeal, Mom and I were on the receiving end of numerous acts of kindness. We spent many long days in a hospital room, dealing with negative doctors, hopeless diagnoses, and less-than-positive test results. As we walked into the house after one of those dark days, we often didn’t know what we’d eat for dinner. And then, quite often, the doorbell would ring, and one of our neighbors would be on our doorstep with something that she picked up from Austin or an extra casserole that she made while making one for her family.

As our friends showered us with kindness, Mom and I would ask ourselves how we’d ever be able to thank our friends. After almost a year of nonstop kindnesses, Dad was stable and was well on his way to leading his pre-hospitalization normal life. During one of our discussions about our friends, Mom and I decided to host a dinner and invite everyone who had lifted us up by their deeds and prayers. We contacted the Hilton Gardens and Inn and met with one of their banquet representatives. We selected September 30, 2016, as the date and Giving Thanks Day Dinner as the theme. Although I had good reason to be very thankful for a couple of our healthcare providers, we decided to exclude Scott & White employees and invite only friends. Unfortunately, four of the 14 people that we invited would be unable to attend.

September 29. Stan and I took a vacation day from work and drove to my parents’ home in Temple. When we arrived at my parents’ home, Mom told me that American HomePatient would be stopping by later today to pick up Dad’s wheelchair, which was fabulous news. Mom and I had been nagging Dad to get rid of this crutch for months. For a few months now, Dad had been using his cane or walker whenever he left the house. Without the wheelchair, he would now use these aids when he was in the house. Halleluiah.

September 30. Dad was very interested in our plans for the evening. Mom and I needed to arrive early to ensure that the room was ready and to apply some finishing touches. Dad wanted to ensure that he arrived last, so he and Stan decided that they would leave at 6:30 P.M., which was the start time on the invitation.

When Mom and I arrived at the hotel, the room looked great. While Dad was hospitalized, I had kept real or artificial sunflowers in his room, and today the tables were decorated with sunflower arrangements. I had originally planned to let each one of our guests pick up a place card and choose an available seat. However, to ensure that everyone would be seated next to at least one acquaintance, I arranged the place cards, which also included the menu choices. Without realizing it, the placement of the place cards matched the order that I had planned to address our guests during my following remarks:

“Last year, my father entered the hospital on May 6 for some elective heart surgery. He didn’t want any fuss, and he definitely didn’t want any visitors, including me, during his short stay. A few close friends knew about his scheduled surgery, but he didn’t want to announce it to the world, and certainly not from the pulpit. I figured that there would be Hell to pay when he learned that I had contacted the church during his surgery.

Jim and Sharon: Until May 15, when I called my mother to check on my father’s status, we thought that everything was progressing reasonably well. During that call with my mother, and the five that quickly followed, I could not understand what she was saying. When I finally realized that she was in desperate straits, I tried to call 911. It was then that I learned that you can’t call Bell County 911 from Harris County. After calls to the Bell County sheriff’s office and the hospital proved fruitless, Jim came to the rescue and called 911 for me. That phone call to 911 was the first of many kindnesses shown to us by Jim and Sharon. Every time that one of them called or stopped by with dinner or desserts, or mowed the lawn, or other numerous things, Mom and I said that we didn’t know how we’d ever be able to thank them.
Jane and Mickey: In my 60-some-odd years on this planet, I never realized the importance of giving food during hard times. However, this was the first time in my life, and probably my mother’s life, that I was losing weight without trying or without being sick. Sometimes we came home from the hospital so emotionally exhausted that the thought of preparing a meal was more than we could fathom. Jane’s yummy salads from Austin and homemade goodies were like manna from heaven, and Mom and I kept saying that we didn’t know how we’d ever be able to thank her.
Marilyn and Earl: For a few years, my parents attended the First United Methodist Church in Belton. On their first day there, a wonderful woman introduced herself and asked if my mother liked book clubs. This chance meeting has grown into a warm and beautiful friendship. I can’t remember when I called or texted Marilyn about Mom’s stroke, but I do remember her being at the hospital to see Mom. My mother probably doesn’t remember that first visit, but I do, not to mention the many other kindnesses. Following her stroke, Mom couldn’t be alone for a month. I had to return to Houston for a couple of days and Stan said that he would stay with her, but there would be an interval when she would be alone. All I had to do was call Marilyn. On the day that I had to leave, she stopped by the house at 8:00 A.M. and stayed with Mom until Stan arrived.Marilyn and Earl stopped by the hospital a few times to visit with Dad, but July 22nd would be the day that Mom and I will never forget. Mom was definitely a friend in need, and Marilyn was indeed the true friend. She sat with Mom for a few hours following his unfortunate event that morning.And Mom and I kept saying that we didn’t know how we could ever thank her.
Pastor Don and Wynn: I’m not from around here, and although I often attended the First United Methodist Church in Temple when I was in town, I didn’t know how to request pastoral care. I wasn’t even familiar with the term. I had contacted Pastor Tom for some unrelated reason about six months earlier, so I had his email address in my phone. Because Tom was sick or out of town, or something, it took a few days for Pastor Don to learn about my father’s hospitalization. But I believe that it wasn’t until my mother was hospitalized for her stroke that Don came to the hospital. I think that I emailed him on the day after she was admitted. Neither of my parents has any recollection of these visits during mid-May, but I do. As Mom healed and Dad recovered, we all came to depend on Don for his faith, kindness, and prayers, especially on the terrible few days following July 22^nd of last year. We know that we sometimes asked a lot of him. Not only did Don have his regular pastoral duties, but he was also attending school in Austin.In addition to the fondness that we developed for Don, we also came to love his wife, Wynn, who Mom met on July 22 and I met a couple of days later. Wynn worked at Memorial Hospital in the chaplain’s office, and we became accustomed to her visits to Dad’s room. There were several reasons that we hated to leave Memorial again for the CCH, and not being able to see Wynn was one of them.We lost count of the times that Don visited Memorial and the CCH. He is so special and important to us, and Mom and I kept saying that we didn’t know how we’d ever be able to thank him.
Kris and Joan: When my parents first started attending the First United Methodist Church Temple, they had the good sense to sit in the pew in front of Kris, Joan, and Sue.During Dad’s first stint at Memorial, he was the church’s Member of the Week, and he received many cards from the church members, but I’m pretty sure that Kris sent more cards than all the other members combined. And each card contained special messages of hope, faith, encouragement, and love. Joan, who is a retired nurse, also helped guide us through some of our darker days, providing support, advice, and comfort to Mom and me.And we kept saying that we didn’t know how we’d ever be able to thank them.
Sue: And then there was Sue. I hardly know where to begin, but I don’t know what would have happened to us without some timely intervention on her part on that terrible day last year, just two days before Thanksgiving. Dad had been sick, and I think that he became dehydrated during dialysis, which caused him to act like he was experiencing a side-effect to a new drug. It was a holiday week, so the doctor’s nurse told us to take him to the ER. We had him transported to the ER, where they rehydrated him. Unfortunately, they decided that we shouldn’t take him home. To make a long story short, I signed an AMA; they sicced the sheriff on us and turned me in to Adult Protective Services. My father was then discharged from Home Care, which had not only medical implications but also financial consequences.After a few tough moments and feeling like I was drowning in peanut butter, I called Sue and woke her up. Needless to say, because of Sue, we were quickly re-admitted, and then she vouched for us to the APS agent. I could go on, but I’d only embarrass her.You can’t imagine how many times Mom and I said that we didn’t know how we’d ever be able to thank her.

Stan: You might think that I’ve thanked everyone, but I’m not quite finished. Sometimes it’s easy to overlook those who are closest to us, but not every woman is lucky enough to have a husband who tells her to “go and take care of your family and don’t worry about me, the house, and the cats.” And that would have been enough, but he then drove to Temple on most weekends to relieve my mother and me so that we could attend church, and then he mowed the lawn and did some other odd jobs around the house.And when my father came home, Stan transformed my parents’ bedroom into a functional hospital room. And every night when I called him, he’d listened to me cry, complain, and rant. I know that we had vowed to be there for better or worse, but he really raised the bar. And his mother-in-law and I don’t know how we’ll ever be able to thank him.
In closing: We also had selfless assistance from a couple of other friends and neighbors. In addition, my best friend postponed a trip so that she could help me out for the week following my mother’s stroke, and my cousin stayed with us for a week last June. Sometimes I can’t believe how we lucked into such wonderful friends and family. My mother and I also don’t know how we’ll be able to adequately thank them.
It would be easy to look back on the last year and say that it was the worst year of our lives, and it probably was. At one point, I was relieved when Pastor Don told me that I could be mad at God, because I couldn’t believe that all this had happened to us. I thought that we were good people. But in hindsight, I’ve come to realize that sometimes bad stuff just happens. In our case, it was the luckiest year because at every bad turn, God blessed us with carefully placed angels like the people in this room. And I don’t know how I can thank Him enough.Yesterday was an anniversary of sorts for us. One year ago yesterday, my father was discharged from the CCH into Home Care. Six days from now, the man who doctors said would not live to see his 87^th birthday will turn 88.
Can I get an Amen?” (And I did!)

The evening was perfect. The food was exceptionally good, and I didn’t cry. After everyone had left, Stan and I stayed for a few minutes and enjoyed a quiet moment and a cup of coffee. As we were preparing to leave, our 19-year old server approached me and told me how much she had liked what I had said, which was the icing on my perfect cake of a day.

Sunflower photo by Marco Secchi on Unsplash

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.

The patients are doing better, but now the caregiver is down

Published on May 22, 2018May 21, 2018 by mellowdee552 Comments

June 1, 2016. The headache that I woke up with yesterday had not subsided and woke me up at 12:51 A.M. I took more of Dad’s Extra Strength Tylenol and then vomited about 30 minutes later. The pain made it impossible to sleep and made me less than productive when I started working at 4:00 A.M. I attended one of my meetings but had to cancel the remainder of my meetings. At 7:00 A.M., I went back to bed.

My husband suffers from migraines, but I very seldom get headaches, so Mom was very concerned. She called her doctor’s office to see if I could see the doctor today, but they didn’t have any openings. We didn’t want to go to the emergency department, so his nurse suggested that Mom take me to an urgent care center. The one closest to the house opened at 9:00 A.M., and we were waiting in the car when they unlocked the doors.

After a short wait, Mom accompanied me to the examination room. After the doctor asked me a few questions and had me walk across the room, he told me that he suspected that I was having a stroke. After the events of the past year, this diagnosis seemed like a bad dream, and I hated that my mother had to hear it. The doctor said that the only way to conclusively diagnose a stroke would be to go to Scott & White, the very place that I had been trying to avoid. Before I left, the doctor handed me a couple of prescriptions for back pain and the headache. Because I was headed for the hospital, I didn’t want to take the prescriptions, but after the doctor all but insisted that I take them, I put them in my purse. After having spent $125 at the urgent care center, we drove a couple of miles to the Scott & White Emergency Department (ED). Dad had a doctor’s appointment this morning, so I told Mom to drop me off at the door and then go home and take care of Dad. If I had learned nothing else this past year, it was that once you walk through the door of the emergency department, you’re there for a few hours.

Unbelievably, the waiting room was empty. Two nurses triaged me and took me right to an examination room. Although this might seem like standard operating procedure (SOP), in my experience with this ED, triage was followed by a lengthy wait in the waiting room. Business must be slow on Wednesday mornings. What was SOP was the blood draw and urinalysis, followed by an hour wait for the test results. While I was waiting, my mother was escorted to the examination room. She and Dad had decided to reschedule his appointment so that she could be with me.

During our wait, the primary ED physician stopped by to tell me that I was in good hands because the ED resident was a neurologist. To my horror, the resident then told me that she was going to order a spinal tap. At that point, I told her that when I had been at the urgent care center, the doctor suspected that I was having a stroke. She was confused by that diagnosis and asked me if I knew how he reached that diagnosis. I told her that I wasn’t sure, but he had been concerned that my walk had been a little disjointed and unsteady. After watching me walk, she was a little skeptical, but she ordered a chest x-ray and a CT scan of my head. After another wait, she ordered a CT scan of my lungs and an x-ray of my head. I could practically hear the bill growing.

May is Stroke Awareness Month. If I had had my wits about me, I would have challenged the diagnosis of the urgent-care doctor. I had no facial drooping or difficulty with speech, and he didn’t check the strength of my arms. Mom had had a stroke on May 15, 2015, so I should have known better.

And then the woman with the traveling laptop entered the room to resolve my bill. After handing her my insurance card, she told me that I had a very good insurance plan for emergency care. My bill had come to $6,000.00 (approximately $1,000/hour), but my out-of-pocket portion was only $2,000.00 (gag). She started to say that if I were to be admitted, there would be some other process, but stopped midsentence and said that I would be admitted. When I asked why, she said that the doctor would return soon and she would tell me. After all of these tests and the pending admittance to the hospital, I wondered what the heck was wrong with me. When the doctor returned, she said that she was admitting me because I had pneumonia. I had spent a lot of time with someone who had had pneumonia twice during the past year, and I was pretty certain that I didn’t have a single symptom that would warrant that diagnosis.

Although I had dodged the spinal tap by bringing up the urgent care diagnosis, I cringed when she said that they needed to draw more blood for a blood culture—one draw from each arm, and they could not use the IV as a source. The worst thing that I inherited from Dad was his veins: we’re both terrible sticks. I told the nurse that she would have a difficult time getting more blood from me. After pooh–poohing me, she tried unsuccessfully to hit a vein in my right arm. She was about to try again when the resident returned, saying that they were not going to admit me. It seemed that I didn’t have pneumonia after all. She said that what they had thought was fluid in my lungs was my diaphragm. They realized their mistake when someone checked the CT scan of my chest.

The good news was that they were going to give me a nice IV cocktail of concoctions that would make my headache go away. Although I was grateful to get rid of the pain, I was not convinced that it wouldn’t return after all of the good drugs wore off. When I asked her if she had any idea what caused the pain, all she said that she doubted my assertion that I didn’t get headaches, which was hugely annoying.

After an hour, the liter of fluid and the good stuff that it contained had drained into my veins. I felt better and Mom took me home. Unfortunately, the good feeling wore off in about four hours.

I was the designated driver for our family-reunion trip to Midland on Friday, but Mom was now having second thoughts about the five-hour drive, and she suggested that we cancel our trip. I reluctantly canceled our hotel reservation and contacted one of my cousins to apprise her of our situation.

June 2. Fortunately, I had the prescriptions from the urgent care center, which we filled after breakfast. Because my pain had started in my head and extended down my back, the urgent care doctor had prescribed one medication to address the backache and another for the headache.

The prescribed pills seemed to do the trick, but they left me feeling stupid and sleepy, which made working almost impossible. I spent most of the day napping.

June 3. Peanut, our female cat, had been ill and Stan had dropped her off at the vet’s office for some tests. I called the vet this morning to get the results. Unfortunately, the news was not good. Peanut’s WBC count was elevated 10x above normal for cats. He said that he was pretty certain that she had bone marrow cancer, and she might also have cancer in her liver. He said that he’d call me Sunday morning before church with another update. During all the terrible times during Dad’s hospitalization, I had cried only once, and then it was for another patient. Maybe it was because of how I was feeling, but this news about our sweet cat was the tipping point for me, and I could not suppress my tears.

I quit taking the medication for my back, but I dipped into the headache meds as often as I could. I don’t know what prompted me to do it, but I pulled out Mom’s yoga mat and ran through some Pilates moves that have helped me in the past with back pain. Before the day was over, I had run through the routine two more times.

Because I had originally planned to be in Midland today, Stan had arrived last night so that he could spend the weekend with Dad. Although our family reunion plans were canceled for Mom and me, I was glad that Stan was here for me.

June 4. Stan relieved Mom today and took Dad to dialysis. He also picked him up at the end of his session, and the two guys ran some errands and retrieved Dad’s lawn mower from the repair shop.

While Stan and Dad spent the day on outdoor activities, I kept running through my Pilates routines and noticed that my headache and back pain had diminished significantly.

June 5. Note to self: the next time that I get a screaming headache and backache, try Pilates before seeking medical assistance. I had had some back problems in the past, but they had never started with a headache. Exercise and stretching were now my first option. When Mom and I went to church this morning, both my back and head were pain-free.

Now Mom, Dad, and I had all experienced the Scott & White Emergency Department. When I went to see my doctor in Houston a week later (as advised by the ED resident), she shook her head, rolled her eyes, and asked: “what kind of medicine are they practicing up there?” I had had the same thought.

Transitioning from home-care patient to normalcy

Published on May 15, 2018May 17, 2018 by mellowdee552 Comments

May 15, 2016. Because Dad had told me that he wanted more access to his computer, I rearranged his computer station so that he could use his computer when I was at my home in Houston. Shortly before he was admitted to the hospital last May, he had purchased a new computer, which ran the Windows 8 operating system. Like most long-time Windows users, he had bonded with the Windows XP operating system and wasn’t enamored with the new operating system. During my return trip to my parents’ home, Dad complained that he could not remember how to use his new computer.

Before Dad’s extensive hospitalization, my parents worked Sudoku and crossword puzzles every evening after dinner. In addition to the hospitalization stay, having the home-care aides and me in the house had disrupted their daily routine. When I asked them if they’d like to resume their former evening activities, both of my parents said that they could not remember how to play Sudoku. I suggested that they start with crossword puzzles and that Stan might be able to get them started on Sudoku during his next visit.

Dad started saying that growing older was terrible. I wished that I could convince him that he was doing well, in spite of his setbacks.

May 17. Per Dad’s request, I was spending less time at my parents’ house. They seemed to be doing pretty well, so I felt more comfortable about limiting my time with them to long weekends, versus the week- or month-long stays. Truth be told, I was probably as eager to resume my normal life as they were to resume theirs.

Following the discussion with my parents about Dad taking pectin instead of a statin to control his cholesterol, I contacted Dr. Elizabeth Ebert, my parents’ cardiologist. According to Jennifer, Dr. Ebert’s nurse, Dad had told the doctor that he wanted to stop taking statins, so she removed them from his list of medications. When I relayed this information to my parents, they said that they had no recollection of this conversation, but now it seemed that we didn’t need to explore the issue of replacing the statin with pectin. Although the nurses were often our best source of information (or alternative viewpoints), I would have preferred that my parents confer with their doctors before adopting the suggestions of a visiting nurse.

Rain had been forecast for the central Texas area, but we received only a slight mist during the morning. Shortly after Dad returned home from dialysis, I packed up my computer and started my return trip to the BMC office in Houston. I arrived at the office shortly before 3:30 P.M. and worked until 5:00 P.M. so that I could meet my former manager for dinner. With my crazy caregiver schedule, I had had only rare interactions with my friends during the past year, and it was nice to visit with a good friend.

May 18. I was in Houston for the remainder of the week and would return to Temple on Saturday. When I worked from the office in Houston, my commute home from work wasn’t terrible, but it wasn’t always predictable, and I missed seeing Stan by a couple of minutes. Once a month, he had to work an all-nighter, and he would not be home again until sometime after 3:30 A.M. tomorrow.

A dove had built a nest of sorts (Doves are inept at building nests.) on our front porch. Whenever I walked up the porch stairs, I would stop and check on the status of the (ugly) baby dove and its mother. Today when I got home, the mother dove was gone, and it looked like a dead baby bird was in the nest. I checked before going to bed, and the mother dove had returned. I assumed that I was wrong about the baby dove, but marvel at how still baby doves could lie. We had also had a dove nesting in a crepe myrtle tree in our backyard, but that nest now seemed to be empty. During the past couple of years, the porch had become a favorite nesting location for doves. Stan said that he didn’t like the messy doves nesting on the porch, but I enjoyed having this bird’s-eye view of spring.

Mom spent a couple of hours at the hospital today with her friend Marilyn, whose husband was battling bladder cancer. Marilyn had been Mom’s friend in need on numerous occasions during the past year, and Mom was glad to be able to return the favor, if only in a small way. Mom’s time at the hospital with Marilyn was one of the few times that Dad had been left alone since he had been at home. Leaving Dad alone might not have been a big step for Dad, but it seemed like a huge milestone for Mom (and me).

May 21. It rained over three inches in Temple this morning, but by noon the rain had stopped. The weather was a little dicey between Houston and Temple, and the drive took me a little longer than usual. Shortly after I arrived, Mom and Dad returned home from dialysis.

Although I had planned to limit my time in Temple to long weekends, the upcoming holiday weekend and family reunion scheduled for the next weekend caused me to extend this trip to two weeks. Unfortunately for Dad, I would be commandeering his computer workspace during this time. After my father had been unable to get up while adjusting the irrigation in my parents’ vegetable garden, Stan suggested that we get them a tractor scoot. It’s sort of like a cross between a wagon and a scooter. We knew that my parents wouldn’t buy it for themselves, so we purchased it for them as an early wedding anniversary gift. Some assembly was required, but they seemed to like it and might actually use it.

May 30. Today was the observed holiday for Memorial Day, so I had the day off from work. Instead of sleeping in, I was rudely awakened at 3:00 A.M. by a thunderstorm. With the memory of last year’s Memorial Day flood (and this year’s Tax Day flood) still fresh in our minds, we hoped that the storm would pass quickly and provide only a limited amount of moisture. Fortunately, the thunderstorm had not also been a gully washer. Mom and I had planned to weed the garden this morning, but we would postpone those plans until the afternoon.

Because Stan planned to take off from work next Friday and spend a long weekend with Dad while Mom and I attended a family reunion, he had stayed home this weekend. In addition to some chores that he had to attend to around our house, Peanut, our female cat, was experiencing some health problems that seemed serious, and she needed some attention.

Shortly before noon, Christine, the home care nurse, stopped by to discharge Dad from Scott & White Home Care. However, when she learned that Dad had not yet transitioned from the dialysis catheter to the fistula for dialysis, she decided to keep Dad in the program for another few weeks. We all agreed that although we didn’t anticipate any problems, Dad had a history of encountering unanticipated problems.

Although the ground was a little soupy, the conditions were perfect for pulling out weeds, and I was prepared with my knee-high rain boots. Mom and I weeded the vegetable garden for about an hour and were pleased with our results. The sky had remained overcast, so we weren’t sweltering from heat.

After I had a chance to de-mud myself, my parents and I prepared a Memorial Day dinner. Dad and I barbequed hotdogs on the grill and mom fixed baked beans. A few years earlier, Mom and Stan witnessed Dad and me accidentally dropping a hot dog on the ground and placing it back on the grill. No such event happened this year and it seemed that Dad and I were in finer grilling form than before his surgery.

After dining on baked beans and hot dogs, we played Oh Hell and Mom won.

transitionArrow2 — Today was also one of my parents’ wedding anniversary.

May 31. When I woke up at 3:30 A.M., I had a headache. I took some Advil with my coffee and logged on to work at 4:00 A.M. A few hours later, I stopped work for a couple of hours so that Mom and I could accompany Dad to his appointment with the endocrinologist. We had never met this doctor and Dad’s new primary care physician had scheduled the appointment. I didn’t know what an endocrinologist did, and I wasn’t sure why we were meeting with her. I liked this doctor, but it was apparent during the introductions that this visit would be challenging for my parents. The doctor was Indian, had a rapid speech pattern, and was soft spoken. Neither of my parents could understand her, so I interpreted everything that she said.

In short, she said that Dad had severe osteoporosis, which he most likely got from lying in bed for six months. During that time, calcium had leeched from his bones and into his blood, which was why his calcium numbers had been so high.

The doctor recommended that Dad take medication to strengthen his bones. Because of his renal failure, the only drug that he could take was Prolia, which is administered as an injection every six months. I told the doctor that I had known some women who sounded like they were dying after taking similar drugs. She told me that today was just a consultation and that we should go home, research the drug, and then make a decision. She said that if we had any questions, we could call her.

When we returned home from the doctor’s office, Dad told me that he was not going to take this drug. At first, Mom was concerned about his decision, but then we started googling for information about the drug’s side effects. Within 30 minutes, we all agreed that the adverse side effects could outweigh the benefits of taking this drug. I had mixed feelings about disagreeing with a doctor’s advice. Although it wouldn’t be the first time that we had gone against medical advice, I didn’t want us to default to that response.

Many of the doctors that we had encountered during Dad’s health-care event seemed happy to discuss his odds of living through the ordeal, but when it came to the drugs that they prescribed, they neglected to address benefits versus side effects, some of which had been severe. I know that thousands (maybe millions) of women take drugs to strengthen bones, but how long does it take for the drug to effect a change, and by what percentage? If you’re almost 90 years old, what benefit can you expect? If a doctor prescribes a drug to reduce fractures caused by falls, wouldn’t it be prudent to prescribe physical therapy that addresses building core muscles? I found it frustrating that the first option for doctors seemed to be the prescription pad.