health care – Page 2 – Tale of Two Parents

A good day in the ICU gets Dad one step closer to a room on the patient floor

Published on December 18, 2018December 18, 2018 by mellowdee55Leave a comment

August 27, 2018. Mom and I arrived at Dad’s room around 8:30 A.M. Dad was a little confused about where he was and why he was there, and I spent a lot of time trying to explain his situation to him.

At 9:50 A.M., Adan arrived at Dad’s room with Emily, his trainee, to conduct a swallow assessment. I was relieved to see him and knew that Adan would conduct a proper assessment that wouldn’t adversely impact Dad. Before he started, Adan left the room to review Dad’s chart. Within moments of his return, the doctor and his entourage of residents and other providers stopped by Dad’s room for morning rounds, which meant that Adan had to postpone his assessment. After conferring with his associates for a few minutes, the doctor told me that Dad’s hemoglobin and platelets were low. It seemed counterintuitive to me, but the doctor said that he’d probably order blood thinner for Dad to address both problems. Because Dad’s fistula had clogged during his last dialysis session, the nephrologist had entered an order for Dad to go to interventional radiology (IR) to have his fistula checked out. If Dad was lucky, clearing out the clog would be a simple process. If the interventional radiologist could not clear the clog, he would need to insert a dialysis catheter in Dad’s neck. I said a silent prayer for Dad’s good luck.

Shortly after the doctors left, Adan and Emily returned. In case a patient aspirates fluid during a swallow study, it’s important to have a clean mouth so that a minimal amount of bacteria goes into the lungs. Because Dad had not brushed his teeth since he arrived five days ago, Adan had him brush his teeth before starting the test. After observing Dad drink some water, Adan said that he had a productive cough and a good swallow. They then had Dad drink some cranberry juice, followed by some pudding. I was thrilled when Adan said that he had not observed any sign of dysphagia, and would order a menu for him. He warned us that food trays get a low priority in the ICU, so he couldn’t guarantee when Dad would get a meal. As Adan left the room, he said that Dad was probably the healthiest person on the floor, which was the best news that we had heard since Dad entered the hospital.

At 10:15 A.M., I saw a familiar face walk by the door. I quickly left the room and was able to stop Dr. Heath White. We had had quite a history with Dr. White in 2015. He had tended to Mom after her stroke and then had periodically been Dad’s attending physician for a couple of months. We chatted in the hall for a few minutes, and he said that he was surprised that it had been three years since he had seen Dad. While we were talking, he pulled out his phone to peruse Dad’s charts to see when he had last added a note to Dad’s chart. As he left, he told me to contact him if we ever had any pulmonary problems. It was good to see a familiar face, and I regretted that he had not had an opportunity to see Dad last year when he looked and felt so well. As much as I liked Dr. White, he had often had negative predictions about Dad’s prognosis.

At 11:00 A.M., Leslie removed Dad’s feeding tube. She then told me that she had started Dad on a new blood thinner to prevent clotting. Because his hemoglobin was low, he might receive a blood transfusion. We had been down this low hemoglobin path three years ago, and I hoped that one unit of blood would do the trick.

Now that Dad was more alert, he talked a blue streak. Not everything that he said was based on reality, and he was still confused about where he was. He thought that he would be going to a hotel and that he would be coming home with us tonight. However, when he and Stan talked about sports or chores that Stan could do around the house, Dad was as lucid as the rest of us. I couldn’t wait until he was moved out of ICU, an environment that often contributed to confusion and delirium.

Shortly before noon, an aide from food service brought Dad his lunch tray. His first meal in five days consisted of puréed chicken noodle soup, milk, iced tea, and orange sherbet. Because he thought that the consistency of the soup was like a milkshake, he decided to use a straw to eat it, which proved to be very messy. While holding the bowl, he tipped it, and half of the soup ended up on the bed. He was able to consume some of it before he devoured the sherbet. Eating again was an important milestone. Although it had been a messy meal, I was practically giddy with relief that he had been able to eat.

After Dad was cleaned up from his lunch, Mom, Stan, and I went home for our lunch. Stan then left Temple around 1:30 P.M., hoping to beat Houston’s afternoon rush-hour traffic. Shortly after he left, I received a text message from Pastor Tom. He indicated that he had spoken with Dad, but he wasn’t sure what was going on and asked me to call him to clarify Dad’s status. Dad was pretty lucid when it came to talking about yard maintenance or sports, but he was pretty confused about his status and what was happening to him. I could understand how Tom would also be confused following a conversation with Dad.

When Mom and I returned to Dad’s room shortly before 3:00 P.M., Dad was sleeping. He woke up to let us know that he would be receiving some blood and platelets. Leslie came in a few minutes later and confirmed that he had been typed and matched and was ready to receive the transfusion when the blood arrived. I was pleased that Dad could accurately relay some information to us about his status.

Dad’s status had improved dramatically. He no longer required medication to elevate his blood pressure, and now he was eating. He was still a sick puppy, but not sick enough to warrant ICU care. I had hoped that Dad would be moved from ICU to a patient room, but now that move seemed doubtful for today. The hospital generally does not like to move patients from ICU while they’re receiving blood. It was getting late, so we were not sure if the IR schedule could accommodate Dad.

As we were preparing to leave the hospital at 5:30 P.M., Leslie told us that Dad should be moved from ICU to 634 North before the shift change. If his food tray arrived after the shift change, she said that she would take his dinner tray to him. Although the 6th floor had a higher patient-to-nurse ratio, she said that they had many more aides and that one of the aides would assist Dad with dinner. When I asked about the blood transfusion, Leslie said that he should be able to receive blood overnight.

When I returned to my parents’ house, I wrote an enthusiastic email message to my sister-in-law, telling her about the turnaround in my father’s health in the past couple of days. Today had been a great day. Dad hadn’t had his fistula checked out, but it felt like he had turned a corner. Mom and I both felt optimistic about Dad’s prognosis.

Are we about ready to leave the ICU?

Published on December 11, 2018 by mellowdee55Leave a comment

August 26, 2018. After having spent an enjoyable evening in Johnson City, Stan and I left for Temple at 7:35 A.M. We arrived at my parents’ home at 9:40 A.M., unloaded the car, and headed to the hospital. Unfortunately, we just missed seeing the doctor during rounds. Dad was on dialysis, which had started at 6:00 A.M. Rachel, the dialysis tech, stopped by shortly after 10:00 A.M. to check on Dad, and said that he hadn’t put up any fuss when she started the SCUF dialysis session. I was glad that he was having more fluid removed and was encouraged that he could withstand the loss of the fluid while still maintaining adequate blood pressure. I had hoped that Natalie would be back as Dad’s nurse and was a little disappointed to see that the name Leslie had replaced hers.

Dad had slipped down the bed, and I used the call button to summon a nurse to reposition him. Instead of Leslie, a male nurse and a female aide entered the room. I immediately recognized the nurse as Fred and said that the last time that I had seen him, his wife had just had a child. He recognized me but said that he didn’t think that I was correct because his youngest daughter was three years old. When I told him that Dad had been a patient here in 2015, he said that he hadn’t realized that that much time had elapsed. It seemed like a mini-homecoming in some alternate life.

Dad talked a lot this morning, and most of what he had to say was pretty depressing. He said that he thought that he and Mom had changed mentally, and he implied that his life wasn’t worth saving. Today was the first day that he’d been talking since the surgery, and I asked him to wait another day before we discussed these serious topics. This talk was also upsetting Mom, and I wanted to redirect the conversation.

Because we had missed the morning rounds with the doctors, Leslie provided us with an update. They had changed his antibiotic, but his white blood cell count was still trending upward. I told her that I had fed Dad some gruel on Thursday morning and was wondering if he could begin eating again. She said that she would try a bedside swallow test to see if he could swallow a pill. I told her that with his history of aspiration, we would prefer to have Speech involved in any swallow test. If she did do the bedside swallow test, I asked that she not use a straw, which changes the shape of the mouth during swallowing and can affect the test.

The nephrologist and his resident stopped by shortly after 11:00 A.M. The doctor asked Dad how he was doing, which was a mistake on his part because Dad started complaining about the hospital, beginning with his stay in 2015. When the doctor explained that Dad was having dialysis to remove fluid, Dad started to give him some attitude about having dialysis. While I was explaining to Dad about the stress that the excess fluid had on his organs and why he needed dialysis, the doctor left. I was certainly glad that Dad was awake and somewhat alert, but he was not the greatest patient in the world and was a bit challenging to control. When Dad asked me what we were going to do for the rest of the day, he got a little annoyed when I said that he was going to stay in bed. By 11:45 A.M., the cold of the hospital was beginning to bother Mom, so she and I went home for lunch.

When we returned to the hospital at 1:30 P.M., I was surprised to see that Dad was off of dialysis. Leslie said that because his fistula had clogged, they had stopped his session 90 minutes early. Still, they were able to remove 2,225 ml. During the past two days, just over 4 liters of fluid had been removed, and Mom and I saw a noticeable difference in the size and weight of his legs.

At 2:50 P.M., Dad had slid down in the bed, and I called for a nurse to reposition him. While the nurses were preparing to move him, they noticed that he was bleeding slightly from his fistula in his left arm. The moment that they moved him, it was like a dam broke and the fistula started bleeding—a lot. The nurses called for some assistance, and Angel, one of the hospital’s top 25 nurses, entered the room. When Angel called down to the dialysis center for advice on how to stop the bleeding, he was told to keep applying pressure until the bleeding stopped. When Rachel, the dialysis nurse, showed up at 3:05 P.M., she said that his fistula had seeped just slightly yesterday, but she saw no real bleeding. By 3:25 P.M. the bleeding had stopped, enabling the nurses to replace his bandages and change his gown and bed linens. About 30 minutes later, Christina, the dialysis resident, stopped by with Rachel to check the fistula.

At 4:30 P.M., Leslie stopped the Levophed drip, which had been keeping his blood pressure at a safe level. She had already reduced it to the lowest dosage earlier, and Dad had been maintaining a MAP of 79 (80 being perfect). Some 15 minutes later, his MAP had dropped to 68. As we left for the day, I hoped that Dad’s blood pressure would stabilize on its own and not dip below a MAP of 68.

As tired as we were when we left at 5:00 P.M., I dreaded leaving him alone. Historically, most of his problems developed when we weren’t there to watch over him. I was so anxious when I wasn’t with him that I was starting to rely on sleeping pills to sleep.

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.

ICU room transfers and road trips

Published on November 27, 2018 by mellowdee55Leave a comment

. I didn’t sleep well, and I got up around 3:00 A.M. and started the coffee maker. One of my photographs was in an art gallery exhibition in Johnson City, Texas, and the opening reception was tomorrow evening. I had made a hotel reservation in Fredericksburg, about 30 miles from the gallery. I now thought that I should cancel this reservation and book a room in a hotel closer to both the gallery and to my parents’ home in Temple. When I logged on to the hotel’s website, I learned that the deadline for canceling without a 100% cancellation fee had passed at midnight, three hours ago. I was too frugal to pay for two rooms, so I kept the reservation in Fredericksburg. Barring any emergencies, we would be gone for only 20 hours.

I had texted Pastor Tom several times yesterday and he finally responded shortly before 5:15 A.M. Unfortunately, his message said that he was out of town. He said that he would notify Pastor Brian about Dad. Although Mom and I would welcome a visit from Pastor Brian, Dad did not have a relationship with him. In addition to comforting us, Pastor Tom could often get a response from Dad.

Mom woke up shortly after 6:00 A.M., and we arrived at the hospital during the shift change at 7:15 A.M. I found a nurse sitting outside of Dad’s room charting, and I asked him if he knew where I could find Dr. Yawn, the doctor who had called me last night. He replied that that was a good question, and set off to locate him. I had only spoken with Dr. Yawn on the phone and didn’t know what he looked like.

While I was waiting, I saw that Dad was restrained with soft restraints. I also noticed that he no longer had the a-line in his right arm. When Dr. Yawn entered Dad’s room, he had a long list of updates to share with me. During the night, Dad had pulled out his a-line and his IV lines. Dr. Yawn and another doctor had tried to find another vein using ultrasound but without success. Dr. Yawn was able to start the central line. He had not yet used it for administering medication but was keeping it open with saline. While we were talking, a transportation person appeared outside of Dad’s room. The doctor told me that Dad was scheduled for a VQ scan at 8:00 A.M., which would test for the presence of a pulmonary embolism. He had had this test before his hip surgery in March. The doctor reiterated Dad’s problems with his liver enzymes and ammonia.

I couldn’t believe that Dad had pulled out the venous and arterial lines; it had to have hurt. I was in pain just thinking about it. While we were talking at the foot of Dad’s bed, I told the doctor that I was surprised that Dad had pulled out all of these important lines, yet left the feeding tube in place. Many patients, including Dad, accidentally pull out the feeding tube because it irritates their nose. The doctor agreed and said that the feeding tube would have been preferable.

I spoke with Dad for a few moments and told him that I was going home to Houston but would return later this evening with Stan so that he could beat Stan at cribbage. He smiled and kissed me good-bye. I hugged Mom goodbye, introduced myself to Jennifer, Dad’s nurse, and I left the building at 7:45 A.M. When I stopped for gas in Somerville, I noticed that I had received a text from my friend Rhoda, who wanted an update on Dad’s condition. The nice thing about Stan’s new car, which I was driving, is that I can make hands-free calls. I called my friend and gave her a quick update on Dad’s fragile condition.

When I got home at 10:30 A.M., I texted Stan to tell him that I was home. I tried to call my mother but all of my calls to Mom were directed to voicemail. Hoping that she might also have Dad’s phone with her, I called his number too, but with the same result. I finally gave up and called the SICU nurses’ station and asked Dad’s nurse to tell Mom that her phone was off.

At 1:30 P.M., I received a call from my parents’ landline. It seemed that Mom’s phone hadn’t been off; its battery was dead, so instead of eating the sandwich that I had prepared for her, she decided to eat her lunch at home and charge the two phones.

Mom said that Dad wasn’t doing very well and that he was having a difficult time getting enough oxygen. However, she said that the nurse had told her that they were going to ensure that he got more oxygen. I didn’t know what that meant, and I hoped that it didn’t mean intubation.

I kept hoping that he’d rally again, but I was becoming concerned. Besides attending the exhibition reception in Johnson City, we were meeting with another couple from Houston. We had been planning this trip for quite some time, and I didn’t want to cancel it. Mom also didn’t want me to cancel the trip, but I told her that I would not go if Dad’s passing seemed imminent. I planned to be gone less than 24 hours, but I didn’t want to take any chances on being gone if he and Mom needed me.

Stan had arrived home from work a little after 1:00 P.M. and by 2:00 P.M., we were on the road back to Temple. Thankfully, Stan said that he would drive. We usually shared the driving, but I had not had a chance to rest and was very tired. Stan hadn’t slept well last night either, so we stopped at Buc-ee’s for some coffee.

During the time that I was away from the hospital, the hospital chaplain, a woman from palliative care, Pastor Brian, and my parents’ neighbor, Sharon, stopped by to visit Mom. Sharon stayed for almost three hours. I was grateful for the pastor and Sharon, but Mom couldn’t tell me much about the visit from palliative care. I didn’t know why, but I was suspicious about this visitor.

Stan and I arrived at the hospital at 5:15 P.M., and we were greeted with the news that the SICU doctors thought that Dad should be moved to the Medical ICU (MICU). At 5:40 P.M., Jennifer said that his room was ready and that he would be transferred to room 246 South in MICU right after the shift change.

Mom and I returned to the hospital at 7:30 P.M. to see Dad in room 246 South, but the room was empty. We walked to the north tower to his room in SICU. He was still there, but they were preparing him for his transfer. We walked with the nurse as Dad was transported to his room in the south tower. The two nurses who were getting him situated in MICU said that we could see him when they were finished—in about 15 to 30 minutes. When we told them that we just wanted to say good night, they stepped away from his bed so that we could kiss him goodnight.

We left the hospital shortly after 8:00 P.M., hoping for a better day tomorrow.

Remembering that recovery can be the worst part of surgery

Published on November 20, 2018 by mellowdee551 Comment

August 23, 2018. Mom and I arrived at Dad’s room shortly after 8:30 A.M. Following earlier surgeries, he had suffered from post-surgery delirium, and I wondered how confused he would be about his surroundings and his situation. Dad was still sleeping when we arrived, and his breakfast tray sat untouched on his bedside table. I was pleased that his breakfast included Cream of Wheat, which he called gruel and which he could easily swallow. Because of his aspiration history and the weeks of swallow rehabilitation therapy required to recover from this disorder, I was always nervous about letting him go too long without eating, and almost 40 hours had elapsed since his last meal. I was able to wake him without much difficulty and coaxed him to swallow two or three spoonfuls of the now-cold cereal and a couple of sips of orange juice before he drifted back to sleep.

A few minutes later, Lisa, his nurse, came into his room. I could tell from the monitors that his blood pressure and pulse were trending downward, and Lisa started making some phone calls. Dr. Christopher Sartin, the orthopedic surgery fellow, stopped by and ordered a blood test to check Dad’s potassium level. The lab tech was unable to find a vein, and eventually had the nurse pause Dad’s IV so that she could draw blood from the IV line. I had inherited Dad’s stubborn veins and understood the torture this activity could be, and I hated to watch him endure it.

When the lab tech left, an aide checked Dad’s blood sugar, which was down to 54, which is very low. His temperature was also low, and his blood pressure was 90/58. A couple of minutes later, Lisa called the doctor again, and I overheard her say something about calling for a rapid. Moments later, I heard an announcement that Mom and I had heard numerous times during Dad’s previous hospital stays but never for him: Rapid response medical alert; in-patient room 546 South.

Dad had been assigned to an unusually large room, which suddenly became very crowded. In addition to his nurse, the room was now being filled with the rapid-response nurse, the charge nurse, the other nurses assigned to 5 South, therapists, doctors, the pharmacist, and the chaplain. In case Dad needed to be moved, someone from the Transportation department waited in the hall outside of his door. Because they kept moving around, I lost count of the number of people in the room after I counted 12 of them. One of the nurses was one who we knew from Dad’s 2015 stay in the hospital, and she continually updated us on what the team was doing and what they were considering. As she disseminated information to me, I relayed it to Mom, who was now very nervous. I overheard them say something about giving Dad Narcan to rid him of any opioids that he had received during surgery.

Thinking that the blood pressure equipment might not be correctly recording, they tried two different machines and then tried the manual process, but all of the readings were similar. To elevate his blood sugar, they gave him dextrose. Myriad devices were ushered in and out of the room. I supposed that there was some bodily function that they didn’t measure, but I couldn’t imagine what it was.

To increase his blood pressure, they started giving him a bolus dose of saline. Although I prefer saline over Lopressor alternatives, I thought that I should tell our friendly nurse about Dad’s fluid overload condition, although at this point, they were fighting to stabilize him. They could address his fluid situation later.

After 30 minutes, Dad’s blood pressure was 104/71 and his blood sugar had increased to a safer 85. The rapid-response team finally decided to move him from the orthopedic surgical floor to surgical ICU (SICU). Fortunately, a room was available, and the transportation tech and the nurses started preparing Dad for the move.

Mom and I followed Dad’s bed through the halls and elevators to room 202 North. As he was being resituated in his room, a nurse walked in and started talking with the doctor. As soon as I heard her voice, I knew that Dad was in good hands. I immediately said, “Hi, Ursula! Do you remember us?” It took her about a nanosecond to remember us. I had to remind Mom that Ursula (from Transylvania) was Dad’s first nurse when he was brought to the Cardiothoracic Intensive Care Unit (CTICU) following his aortic valve replacement surgery on May 6, 2015. She said that she was the SICU charge nurse and would get him situated, and that Debra would be his nurse.

Dad’s temperature was still low, so the doctor ordered a Bier Hugger to warm him. Because he wouldn’t be getting out of bed anytime soon, Ursula also started a Foley catheter. It was now 11:50 A.M., and we still hadn’t had a coherent conversation with him since he was wheeled to surgery yesterday morning.

I started having unsettling feelings of déjà vu when the nurse inserted a feeding tube at 12:15 P.M. I knew that it was necessary, but it seemed like a big step backward. A few minutes later, Dr. Jonathan Curley, the resident SICU doctor, asked us to leave the room because he wanted to start an a-line in Dad’s arm, which required a sterile environment. The a-line would enable the doctors to monitor Dad’s blood gases and continuously monitor his blood pressure. Because you cannot insert IVs, draw blood, or take blood pressure from an arm that has a fistula, starting IVs and a-lines was more difficult now that he had a fistula in his left arm.

When Mom and I returned to the room at 1:00 P.M., the doctor was trying unsuccessfully to start another IV line. About an hour later, Patricia, a tech from the cardiac unit, administered a cardiac ultrasound. She couldn’t tell me what the test would show, but I assumed the doctor wanted to see if his heart function had improved.

Around 3:00 P.M., Dad’s first IV infiltrated and they needed to start another IV. Unfortunately, his body wasn’t giving up veins without a fight. Dr. Curly called in another resident, whom I nicknamed the vein hunter. He also used ultrasound and he eventually found a vein on Dad’s upper right arm. Dad’s MAP was still very low, hovering between 54 and 58, but he was receiving more albumin to raise his blood pressure. I kept hoping that the albumin would start working. His MAP needed to increase to at least 60 (ideally 65).

By 4:15 P.M., Dad had finished receiving his dosage of albumin, but his MAP had only inched up to 59-60. However, his glucose level had increased to a more normal level of 92.

Although Dad was awake for much of the afternoon, he wasn’t making much sense. At 4:45 P.M., Mom and I were exhausted from this emotionally draining day, and I was concerned about the emotional strain on Mom. We decided to go home for the evening. As we walked out to the parking lot, I received a text message from Sharon, one of Mom’s dear neighbors, saying that she and her husband would provide us with dinner. After we arrived home, I walked across the street to their house to tell them about the day and to accept their offer of dinner. They said that they would bring the meal over in about 30 minutes.

I had been back in the house for only a few minutes when my phone rang at 6:06 P.M. It was Dr. Yawn from the hospital. He started by saying that Dad was stable but followed that statement by asking if my mother or I had medical power of attorney. He said that although Dad was stable now, he was pretty sure that he wouldn’t stay that way. He said that Dad’s heart was not doing well. They had performed an echocardiogram yesterday, and the side of the heart that pumps blood to the lungs was strained. He also said that Dad’s ammonia level was elevated, which was causing much of his confusion. The doctor said that the elevated ammonia level was the result of his elevated liver enzymes and depressed clotting. He said that they were giving him medication to address the elevated ammonia. He seemed to think that Dad had more confusion than from just anesthesia, but I told him that I had been anticipating 3-4 days of confusion, which had become normal for him after surgery. He had no response, and I felt that he discounted what I said.

He went on to say that Dad had been slowly responding to some medication to elevate his low blood pressure, but that IVs cannot be used to administer most of the Lopressor class of drugs, which would require a central line. Dr. Yawn needed permission from us to insert the line so that they could administer these drugs. I reluctantly gave him permission to proceed with the procedure, which would require an interventional radiologist.

Dad seemed to be making urine, but because of his liver situation, the doctor said that he would not be able to be dialized if his kidney function failed. The organs have a pecking order of importance, and it seemed that the liver trumped the kidneys, so that anything that might help the kidneys but compromise the liver would be off limits. The Doctor went on to say that Dad had the potential for severe liver problems, which would yield a severe outcome. He asked if Dad had a history of liver ailments. I told the doctor that the only problem that he had had was when he was very ill in 2015 and his liver was in shock for a few days.

The conversation continued to get worse when Dr. Yawn started asking about any extreme measures that we would want to hospital personnel to take should Dad’s heart stop beating. I didn’t want chest compressions, but I felt that I should discuss this issue with Mom, and then call him with our decision.

Mom and I had a long and heartbreaking conversation about this question. In the end, because Dad had signed a DNR for his surgery in 2015, I felt certain that he would not want the chest compressions, and I pleaded with Mom to agree. During the past 30 years, Dad and I had had several conversations about procedures that he would not want at a later stage in his life. I now prayed that he would have stuck with those declarations, had he been able to speak. Although we watch TV and movie doctors give chest compressions, in reality, the act is violent. Mom reluctantly agreed to forgo extreme measures, and I called Dr. Yawn. When I told him the reasons for our decision about not administering chest compressions, he agreed and used the word gruesome to describe the process.

I asked the doctor to call us during the night if any event occurred so that we could go to the hospital to be with Dad.

As I ended the call, the doorbell rang. Sharon, and her husband, Jim, were on the front porch holding our hot dinner, which they had just finished preparing for us. I thanked them profusely for their kindness and quickly told them about our phone call. After they left, I put most of the meal in the refrigerator. During the past 30 minutes, Mom and I had lost our appetite.

I didn’t sleep well, but at least my sleep was not interrupted by a ringing telephone.

Replacing the crumbled hip

Published on November 13, 2018November 13, 2018 by mellowdee55Leave a comment

August 21, 2018. Once again, Dad objected to my plan to come to Temple to sit with my mother in the surgery waiting room. I told him that I had to be there for Mom, but truth be told, if something went wrong, I’d never forgive myself later for not having been there to give him a hug and kiss before his surgery.

I had a full schedule today and didn’t leave Houston until 7:15 P.M. Houston traffic was still a bear, and I was thankful that I was able to bypass most of it with my EZ Tag toll tag.

I didn’t arrive at my parents’ home until after 10:00 P.M. I had a house key, but Mom had insisted that she would wait up for me until I arrived. As I expected, Dad had been in bed since 8:00 P.M. and was asleep when I arrived. Mom told me that we would be getting up very early tomorrow because Dad had to be at the hospital by 5:30 A.M. for his 7:30 A.M. surgery. At least one of us would be well rested.

August 22. We all woke up earlier than necessary, and we were ready and in the car by 5:00 A.M. Needless to say, the streets of Temple were all but deserted at that time, and we were in the day surgery waiting room by 5:15 A.M. Dad’s name was called a few minutes later, and we rode the elevator to the second floor and located our surgical bay. We were greeted by Richard, one of Dad’s nurses, who handed Dad his surgical wardrobe. While Mom helped Dad to change into his surgical attire, I waited outside of the bay curtain.

After Dad had donned his surgical gown and cap and was situated on the gurney, Allison started his IV. Shortly after 7:00 A.M., the anesthesiologist arrived to address any questions that we might have. I mentioned our experiences of Dad’s challenges with extreme confusion following surgery. His not-so-comforting response was that as we age, anesthesia becomes more problematic, so today would be no better (and could be worse) than Dad’s surgery in March.

Moments after the anesthesiologist left, Dr. Daniel Stahl, the orthopedic surgeon arrived. He described the surgical procedure, and while talking, he lifted the portion of the sheet that covered Dad’s legs. Dr. Stahl seemed somewhat alarmed when he saw the many sores on Dad’s legs. The doctor then told us that because of Dad’s age, his kidney issues, and the sores on his legs, the hip-replacement surgery was very risky. When he offered Dad a chance to cancel the surgery, Dad said that it was too late to back out now, to which the surgeon replied that until he made the incision, it was not too late to back out. I asked the doctor why he didn’t perform the hip replacement surgery in March. Evidently, the earlier surgery of mending the hip with pins was a lot less invasive and often sufficed. I, on the other hand, wasn’t feeling great about more surgery and starting over with rehab.

After hearing from Dad that he wanted to proceed with the surgery, the doctor told Mom and me that he would meet with us after the surgery, and then he left. At 7:25 A.M., Shasta, another one of the OR nurses, wheeled Dad to the operating room. As Mom and I proceeded downstairs to the surgery waiting room, she was noticeably upset. She said that during the pre-op visit on Monday, she had not heard that the hip replacement would be a high-risk surgery for Dad.

While we waited, I mentioned to Mom that Dad would probably require rehab. She said that after their previous experience with Cornerstone, she didn’t want him to go to a rehab facility. I reminded her about how weak he was after the last surgery and that we should be open to rehab, even if we went someplace other than Cornerstone.

Dad’s surgery was over at 9:30 A.M, and the surgeon stopped by to speak with us a few minutes later. He said that Dad came through the surgery fine and explained a bit about the condition of the hip from the earlier surgery. When I asked if we would bring Dad home from the hospital, he said that Dad should go to rehab for a couple of weeks. Before he left, he told us that we would be notified when Dad was ready to leave recovery. After the doctor’s disturbing comments prior to surgery, Mom and I were very relieved and eager to see Dad.

An hour later, Mom and I were becoming concerned that we hadn’t heard anything about Dad. We were also starting to turn blue from the temperature in the waiting room, which must have been set to 65 degrees. We had seen several people leave the waiting room to see their loved ones and we were curious about our long wait. When I approached the waiting-room clerk to check on Dad’s status, she told me that “they” would call her when he had a room. At 11:15 A.M., almost two hours after his surgery, his recovery nurse, Karly, called us to tell us that he was still in recovery because there were no available beds on the orthopedic floor. I gave Karly my mobile phone number and Mom and I went home for lunch and to change into warmer clothes.

About an hour later, Karly called and told me that a room on the orthopedic floor was being cleaned. When I asked her for the room number, she said that to avoid problems caused by last-minute changes, she could not give me the room number until he was in the room. At 1:15 P.M., as we were backing out of the garage, she called me again and told me that Dad was in room 546 South. We arrived at Dad’s room at 2:00 P.M., and Pastor Tom from my parents’ church entered the room about five minutes later. During his visit, he told us that quite a few of his church members had had hip replacements and recovered quickly. After a short visit and a prayer, Tom left at 2:15 P.M.

Dad’s nurse, Brittany, was very nice and spent a significant part of the day monitoring his vitals. His oxygen saturation level was low because he sometimes stopped breathing, but it eventually leveled out between 98 and 99%. She asked if he had any history of sleep apnea. We said that he didn’t, but I mentioned that we had seen similar breathing patterns after earlier surgeries.

With Dad sleeping soundly, I was able to give the nurse an update on his meds. I also told her that he had a bit of fluid overload, and that his face was usually puffy in the morning, although the fluid usually dissipated by mid-morning. Unfortunately, as the day progressed his legs became swollen from sitting in the wheelchair all day. A couple of hours later, she said that Dad’s face seemed swollen from lying down all day, and she elevated his head.

Around 3:00 P.M., a millennial in red scrubs and many tattoos entered the room with a heart monitor, and hooked it up to Dad. When I asked her if she worked in the war room, she said yes. I had seen the war room employees in one of Dad’s earlier stays in the hospital and was relieved that his heart would be monitored. The color of employees’ scrubs identified their role at the hospital, and the red scrubs stood out among all of the others.

Dad’s oxygen saturation and blood pressure levels looked good for most of the day, but his heart rate hovered around 109, which seemed high to me. When I asked Brittany about it, she said that as long as it wasn’t fluctuating between the 60s and 90s, he should be all right. She reminded me that because of his AFIB, he was being closely monitored by the heart team in the war room, and they would keep an eye on his heart rate.

Try as we might, Mom and I could not get Dad to open his eyes for more than two seconds, and he only grunted like a bear when we asked him questions. At 4:45 P.M., his condition had not changed, and we decided to go home for the day. Mom and I were sleep deprived, had been here for the better part of 12 hours, were starting to get hungry, and Dad would probably sleep for the remainder of the day.

We were relieved that the surgery had seemed to go well and that his condition seemed stable. I didn’t know how well Dad’s new hip would work with all of his excess fluid. I hoped that he might have some dialysis during his stay, which I hoped might improve his mobility.

Because of his history of delirium and confusion caused by the anesthesia, the next three to four days would be important for him, and probably a little challenging for the three of us.

Is this fall number 5 or 6?

Published on November 6, 2018November 7, 2018 by mellowdee55Leave a comment

July 25. Dr. Ebert’s nurse called me today. She had repeatedly called my parents’ phone number but there had been no answer, and she was concerned that she might not have their current phone number. I confirmed that she had the correct phone number and suggested that she keep trying. About 30 minutes later, Dad called me to see if I had called him. Evidently, he had heard the phone, but my mother was away from home and he had not been able to answer it before it stopped ringing. I told him that the call was most likely from Dr. Ebert’s nurse. I couldn’t tell him why she was calling, but I was certain that she would attempt another call.

When I called Mom a couple of hours later, she told me that Dad had not walked or exercised since Stan and I had left on Sunday, three days ago. I suggested that she move Dad’s little step into the living room so it would be easier for him to access and perhaps use it. I didn’t think that it was a reasonable substitute for walking, but it was better than nothing. During our call, Mom told me that Dr. Ebert’s nurse had called to tell them that Dad’s November 20 nephrology appointment had been changed to Tuesday, July 31 (next week!), at 3:30 P.M. I was relieved that the appointment had been moved up because I didn’t think that Dad or his kidneys could wait four months to see a nephrologist. Also, with this schedule, I could do my volunteer shift at the wildlife center, drive to Temple for the appointment, and then come home on Wednesday in time for my shift in the cattery at the SPCA. Everybody wins.

July 26. I called my parents’ home numerous times today, starting at 3:00 P.M. Finally, at 4:50 P.M., Mom answered the phone. I could hear Dad’s voice and a woman’s voice in the background, and Mom said that she would call me in five minutes. When she called, she told me that Dad had fallen while trying to walk from the car into the barber shop. As they were coming home, neighbor Jo’s aide saw them and offered to help. She wheeled Dad into the house and started bandaging his bloody arms.

Upon hearing this news, I lost my cool. When we were in town this past weekend for Stan’s birthday, Mom mentioned that Dad needed a haircut. I told her to wait until we returned so that Stan and I could help get Dad into the inaccessible shop. Mom said that as soon as Dad fell, she could hear my words in her ears. I told her that she and Dad needed to reassess their living options, and she said that they would never live in a nursing home. I wished that they understood that they had options other than their large, unmanageable home or a nursing home.

Before I hung up, I told Mom to contact the orthopedic surgeon and schedule an X-ray to ascertain whether or not Dad had broken or rebroken any bones.

July 27. After spending a few hours away from home today, I logged on to Dad’s MyChart account and noticed that his Tuesday appointment with the nephrologist had been rescheduled to a date and time that I could not make. The change was required to accommodate a new appointment with the orthopedic surgeon. I called Mom to see if she would let me try to reschedule the nephrologist appointment to a more convenient time for me, and she agreed. I spent the next 30 minutes on the phone with a very patient woman who worked at the appointment desk at the dialysis center. I was able to reschedule the appointment with the nephrologist to Monday afternoon. It wasn’t the most convenient time, but I could make it work without missing any of my commitments or appointments in Houston.

July 29. After attending my church in Houston, I packed a small bag and drove to Temple. Traffic was better than I would have expected on a Sunday afternoon, but parts of US 290 still left me white knuckled. Although the seemingly 100-year construction project was nearing completion, some of the road conditions were still far from ideal.

When I arrived at my parents’ home, Dad was sitting in a glider chair with his legs resting on an ottoman. It was the first time since his surgery in March that he had been able to get himself in this chair. In addition to it being much more comfortable than his wheelchair, having his feet elevated might help reduce the swelling in his legs. Unfortunately, while he was on the glider, he was watching the Texas Rangers beat the Houston Astros.

After dinner, the three of us played a game of Oh Hell, and Dad won.

July 30. Besides the afternoon appointment with the nephrologist, Dad had a 9:10 A.M. appointment with the lab. According to my parents, Dad seemed to be having weekly trips to the lab for blood draws. Each specialist ordered lab work that addressed only his or her area of specialty. With any luck, Dad wouldn’t need any more blood draws for a few weeks. After we returned home from the lab, Dad helped me assemble a canvas stretcher for an art project. Before we were finished, I had hauled at least six different tools from his workshop into the living room, but we had a good time working with the difficult stretchers. After lunch, we all snoozed for a few minutes before going to the dialysis center to meet with Dr. Maaz Syed Ahmed, the nephrologist.

My parents had a little difficulty understanding him, but they liked this doctor. He encouraged Dad to keep taking one pill/day and to monitor his weight and blood pressure. Dad’s creatinine level was elevated above high normal, but the doctor didn’t think that that Dad’s level was alarmingly high. The doctor also did not recommend that Dad resume dialysis, but he provided the following guidelines:

Restrict fluid intake to less than 50 ounces per day.
Do not exceed 2,000 mg of sodium per day.
Schedule an appointment with a wound specialist to address the wounds on his legs.
Walk as much as possible, but when seated, keep his legs elevated.
To address any pain, take Tylenol. Do not take aspirin or Advil.

The doctor asked Dad to schedule a couple of follow-up appointments before we left the building. Dad now had another appointment in October with the nephrology PA and then in January with Dr. Ahmed. I hoped that Dad liked this doctor enough to follow his recommendations, which seemed to dovetail with Dr. Ebert’s advice on July 17.

As soon as we returned to their home, I packed up my car and drove back to Houston, arriving shortly before 7:00 P.M.

August 3-5. After Stan arrived home from work, we drove to Temple and spent the weekend with my parents. Dad ignored my requests to walk with him and did not walk during the weekend. He and Stan built a higher step, which Dad was excited about using. I still didn’t think that the step was a reasonable substitute for walking, but Stan gave me a look that suggested that I not raise any objections. Dad had enjoyed working on this little project with Stan and felt that it would help him. For me to raise objections wouldn’t accomplish anything and would only irritate Dad.

As expected, we played Oh Hell Friday and Saturday nights.

August 7. Mom was not at home when I called today, so Dad and I had a chance to discuss her birthday dinner. She would be 91 in a couple of weeks, and Dad had assured Mom that I knew how to prepare her favorite food, chicken-fried steak. I had never fried a chicken, let alone steaks, and I was thankful that I had a membership with Omaha Steaks. I was pretty certain that they knew how to prepare chicken-fried steak. Because Mom loved balloons, I planned to get her some, and I also planned to have flowers in her honor delivered to the church for the August 19 services.

August 9. Dad accompanied Mom to the store today, but he stayed in the car. He had not been walking, but he had convinced himself that using the little step that he and Stan had made would be an adequate substitute for walking. Evidently, getting Dad from the house into the car was a real struggle, and it became clear to Mom that walking was important. She decided that Dad must start walking again and planned to broach the subject with him. I stressed to Mom that he needed to walk over the weekend so that he could get into the car on Monday for his physical therapy.

August 12. Dad didn’t walk today, but Mom said that she was able to help him transfer from his wheelchair into the glider chair (with ottoman). She said that he fell asleep as soon as he was situated. I was glad that he was out of his wheelchair and sitting with his legs elevated. I’m unable to watch television in these glider chairs because their soothing gliding action puts me to sleep within moments.

August 13. Dad slipped or fell out of bed this morning while trying to transfer from the bed to the wheelchair. According to Mom, it took her about 30 minutes to get him up and into the wheelchair. This event marked the second time in the past couple of weeks that he had slipped to the floor. Getting Dad up and off of the floor exhausted Mom, which concerned me. Fortunately, he didn’t have a physical therapy appointment until 10:30 A.M., so they both had a little time to rest before they had to go to his physical therapy appointment with Christi. Shortly after PT started, Mom and Dad told Christi about his fall this morning. She stopped the therapy session and scheduled an appointment for Dad later in the day with the orthopedic surgeon’s PA. She said that she would consult with the surgeon and then call my parents to see if they should continue therapy. The therapist strongly suspected that Dad would require hip-replacement surgery. Ye gods.

August 15. My parents still hadn’t heard from the surgeon’s office, which meant that Dad was just sitting around without any physical therapy—regressing.

I was a little anxious about today’s activities. Tomorrow was Mom’s 91^st birthday and her driver’s license would expire. The Temple DPS office was small, and when the 30 chairs inside were full, people had to wait outside in the 100-degree heat. Mom planned to go early to avoid the worst heat of the day, but I worried about her standing outside in the heat and sun. I also was worried that she might not get her license renewed, which would create an impossible situation for my parents. Until Dad was up and around, she was the only driver in the house.

When I called Mom this evening, I was pleased to learn that she waited only 15 minutes outdoors and then another hour inside. Even better, her license was renewed. One hurdle down, numerous more to go.

August 16. Today was Mom’s 91^st birthday. On this date 41 years ago, Elvis Presley died, and later today we learned that Aretha Franklin had died of pancreatic cancer. After Mom and I discussed the sad news of the day, she told me that someone from the surgeon’s office had called and scheduled a pre-op visit for Dad on Monday, August 20, followed by surgery on Wednesday. I just hated the thought of more surgery. It seemed to me that we were back to where we were on March 24 when Dad fell and broke his hip, and I dreaded the thought of another hospital stay.

Maybe enlisting the assistance of a physician would help

Published on October 30, 2018October 30, 2018 by mellowdee551 Comment

July 3, 2018: Independence Day fell on a Wednesday this year, but for Stan and me to celebrate the holiday with my parents in Temple, we had to have our celebration on the preceding weekend. Afterward, I had left their home with some concerns that I hoped Dad would address. However, when I called Mom today and asked her if Dad had taken a pill today, she said that he had not, and he was through taking them. When I asked her why, she said that Dad felt that he was making enough urine without the aid of the diuretics. I couldn’t believe that he was reneging on our agreement to take one pill every day. I understood that it was his life, but what he did also affected the rest of the family, especially Mom. I also wasn’t sure that he understood the possible consequences of his decision.

In desperation, or maybe out of frustration, I called my friend Sue, the dialysis nurse practitioner, to sanity-check my assumptions and fears. Unfortunately, all of my fears about what Dad was doing to his body were well founded. After sharing the highlights of my 30-minute conversation with Stan, he encouraged me to write a letter to Dad, outlining my concerns, describing Dad’s symptoms, and listing the probable consequences of his decision to quit taking the pills. I agreed, but because I felt that time was of the essence, I decided to email the letter to my parents and then tell them to read the message. In my perfect world, they would print it and refer to it often.

July 4: It was raining in Houston, and it rained most of the day. The media dubbed the rain event the Fourth of July flood.

I called Mom to see how they were faring and to tell them about our weather, but there was no answer. I waited a few minutes and then called again. This time my mother answered, but she seemed out of breath. It seemed that while Dad had been showering, he had fallen off of the shower chair. It’s not easy to fall off of a shower chair, but because of his fluid overload, his center of gravity was out of whack. He didn’t break any bones, but he dislodged a large scab on his elbow, causing his elbow to bleed profusely. I didn’t want to keep Mom too long from her cleanup activities, so I quickly told her that I had emailed her a letter for Dad. She said that she would be having a “talk” with Dad later today and she would print my letter and have it handy during their discussion.

When I called my parents again later in the day, it seemed that my parents had had a come-to-Jesus meeting. According to Mom, following their little talk, Dad took his pill and said that he would continue taking them. From her lips to God’s ear.

July 9. Dad saw the orthopedic surgeon today. He said that although Dad’s hip was healing, it was not completely healed. Considering that Dad had severe osteoporosis, I was thrilled that the doctor expected the hip to heal. Mom added that the doctor said that he thought that Dad’s leg seemed thinner; however, I had a hard time believing that he could recall the size of a patient’s leg that he saw a month earlier.

July 10. According to Mom, Dad was still taking his pills. Stan and I had been spending every other weekend at my parents’ place, but because of a work conflict, Stan would not be able to accompany me to Temple this coming weekend. When I relayed this information to Mom, she was very disappointed. I suspected that Dad was also disappointed. My father cared for Stan and always looked forward to seeing him. Stan also seemed to have a calming effect on my parents.

July 15. Mom and I usually attended church when Stan and I were in Temple. Because Stan wasn’t here, Mom thought long and hard about whether she should attend church and leave Dad home alone. She finally decided that we would go when Dad insisted that she and I attend church. Unfortunately, while we were gone, Dad tripped on one of the front wheels on the wheelchair when he tried to stand. He wasn’t badly hurt, but his fragile skin was quick to tear and bleed. When we returned home, Dad had a bloody leg and sock. Feeling guilty for having left him alone, Mom dug into her stash of bandages and tended to his leg.

When I asked him if he had taken his pill today, he became a bit miffed at me, telling me that he had a lot of things to do today and he didn’t want to take the pill. After telling him that I couldn’t think of anyplace that he needed to be, he eventually took a pill. My health discussion with Dad seemed to deflate his mood, and getting him to take his pills felt like a hollow victory.

Fortunately, he didn’t stay mad at me for long, and we spent quite a bit of time planning for his 90^th birthday celebration on October 6. We were expecting one of my cousins and her family, and we needed menus for three days. Dad and I were partial to many of the same foods, and we developed menus that contained some of my favorite foods as well as his. Dad also wanted to play a few hands of Oh Hell during the festivities, and he drew a seating chart of how we would seat seven people around a table that accommodated six.

Mom told me that Dad had an appointment this coming Tuesday with his cardiologist, Dr. Elizabeth Ebert. I had met Dr. Ebert on several occasions, and I hoped that she would not mind if I contacted her about my father in advance of his appointment. I assumed that my parents would not tell her about his reluctance to take his pills, so I planned to send her a message via MyChart, Scott & White Hospital’s patient portal. I had been using this website to communicate with Dad’s physicians when he was at home on home care. His credentials were cached in my browser, which enabled me to periodically monitor his test results and correspond with his doctors.

July 16. I wrote the following email to Dr. Ebert and hoped that she would read it before Dad’s appointment the next day:

“Hi, Dr. Ebert.
I’ve been encouraging my father to see you. Dr. Issac (his nephrologist), said that he could try getting off of dialysis if he would take diuretics. My father has been taking them on a less-than-regular basis, and I am concerned about fluid overload and how it might be affecting his heart and lungs. He views the diuretics as an imposition that affects the quality of his life. He hasn’t seen any nephrologist since November 2017. My parents trust you, and I hope that you can have a frank discussion with them.

Thanks.
Melody Locke”

July 17. When I spoke with Mom this evening, she said that Dad’s appointment with Dr. Ebert had gone well. While they were in the doctor’s office, she referred Dad to Dr. Concepcion, a senior nephrologist with Scott & White. I knew and liked Dr. Concepcion, but he spoke with a heavy accent, and I feared that my parents would have a difficult time understanding him. After our call, I told Stan about the upcoming appointment with the nephrologist, and he told me that I needed to go with them, and I agreed. When I logged on to Dad’s MyChart account, I was dismayed to learn that the appointment was scheduled for November 20, more than four months from now, and a year since his last appointment.

July 22. Today was Stan’s birthday. We had arrived in Temple yesterday and celebrated the previous evening with some of his favorite Midwestern foods. He and Dad also spent some time playing cribbage. While Mom and I attended church today, the guys played more cribbage and took time out to build a mini step that Dad could use to exercise his legs while he was sitting. I was able to get Dad to walk twice this weekend. We now sing She’ll be “Comin’ Round the Mountain” when he walks. We could usually sing four verses before he had to stop and rest.

Dad said that he needed a haircut and would see the barber either this coming Wednesday or Thursday. Recalling the difficult time that Mom and I had getting him into the barbershop during a previous visit, I implored her to wait for a weekend when Stan and I could help get him into and out of the building. I didn’t get much of a response, but I hoped that Mom would recall the harrowing experience.

July 24. I logged on to Dad’s MyChart again today to see if Dr. Ebert had left any notes about Dad’s last appointment. I was pleased when I read the following message:

“RE: Visit Follow-Up Question

I spent a good bit of time last week with your father (and mother) in the clinic. I expressed how important it was to take his diuretic every single day. He did complain that it was an inconvenience and he did not feel that he should have to take it daily. I explained that with his kidneys, he needed to take the diuretics if he wished to stay off of dialysis. I told him that as long as he had 6 to max 8 hours, then the diuretics would have worn off. I told him that if his appointment was at 2 in the afternoon, then he should take his diuretic at 6 am; or if he had a 10 am appointment, to take his diuretic as soon as he got home. I also encouraged him to follow up with Nephrology. He informed me that he did not wish to go back to Dr. Issac, so I instructed him that he should see another Nephrologist. He requested a recommendation. While I do not know all of the Nephrology department, I reported that Dr. Concepcion is very good. Unfortunately, it appears that an appointment was not scheduled until November. Because of the delay, my office will be contacting him requesting that he do some lab work so we can see where everything is now (electrolytes, renal function, etc.). We are also going to get him an appointment with a nutritionist to discuss an appropriate diet (requested by your mom). If he continues to have some difficulty, then I will also request that he be seen by one of our Heart Failure nurse practitioners so that they can continue to monitor him and reinforce the need to take his medications.

Sincerely,
Dr. Ebert”

I hoped that Dad would heed her recommendations. I felt that with Dr. Ebert as an ally, Dad might start taking his pills on a regular basis and reduce some of the fluid in his extremities, which would improve his center of gravity and reduce the weight in his legs.

Attempting to recover at home

Published on August 14, 2018August 14, 2018 by mellowdee55Leave a comment

April 13, 2018. A lot had happened since our last visit to Temple. Dad had checked himself out of Cornerstone, which meant that instead of receiving daily physical and occupational therapy, he would receive physical therapy twice a week at the Roney Bone and Joint Institute. After Dad’s unorthodox transfer home, Stan and I were anxious about his situation and were eager to set eyes on him.

Stan and I left Houston for Temple shortly before 3:00 P.M., but because of an accident in Cameron that closed the road in both directions, we didn’t reach my parents’ home until 6:30 P.M. Shortly after we arrived, I learned that Dad had not been out of his wheelchair since his last physical therapy treatment on April 10. In principle, Mom would help Dad with his rehab exercises between sessions with the therapists, so I was a bit concerned that nothing had happened since he had been home.

We had a nice evening, and I tried to contain myself and not say anything about Dad’s lack of therapy since his return home. The four of us discussed some of the chores that they needed Stan and me to do over the next two days. We played Oh Hell, and I won.

April 14. Following our Saturday breakfast of homemade waffles, we reviewed and refined the list of chores that Stan and I needed to tackle today. Mom and I went to Academy, Walgreens, and WalMart. Dad had asked Mom and me to find some exercise aids that he could use at home. We purchased a couple of items from Academy, but I doubted that he would use them. They were simple and inexpensive so our loss wouldn’t be significant. After we returned from our shopping expedition, I tried, without any success, to encourage Dad to try walking a few steps with his walker. I hoped that he would try walking a few steps before we left for home tomorrow.

My parents had a large vegetable garden. Between Dad’s stint in the hospital and rehab and Mom looking after him, weeds had taken up residence among the tomatoes, squash, beans, and cantaloupe. While surveying the garden, I wondered why the vegetables couldn’t be as low-maintenance as the weeds. After lunch, I weeded the vegetable garden while Stan planted a couple of rose bushes and a couple of saplings in the yard. The day before Dad fell, he had placed bags of mulch in the front gardens. A couple of weeks ago, Stan had spread the mulch but thought that we needed to purchase a couple more bags, but Dad wanted only to use what he had purchased. When I had finished weeding the vegetable garden, I redistributed mulch in the front gardens. I had often said that my parents’ large yard kept them active and was good for their health. The large yard was now becoming a chore for Stan and me, and we fantasized that they would consider downsizing.

During our happy hour, Dad announced that he and Mom had decided that they could not continue living in their home for many of the reasons that concerned Stan and me. Dad said that they wanted our opinion and looked to us to do some research. We discussed many options, and it seemed that they wanted to move into a small house, which wasn’t my first choice for them. However, I knew of a 55+ community in The Woodlands and discussed its possibilities. I allowed myself to dream of all sorts of possibilities that included them living in or near Houston.

April 15. While Mom and I attended church, Dad and Stan played cribbage. After lunch, I tried again to get Dad to walk a few steps with his walker before we returned to Houston, but was unsuccessful. Stan and I left at 2:40 P.M. and arrived home at 5:50 P.M. Although we were concerned about Dad’s lack of therapy, we were very encouraged that my parents were open to moving.

April 16. I spent a few hours scouring the web for independent-living communities in Harris County that had decent reviews. I spoke with a representative from an independent-living community in The Woodlands, Texas. The community sounded exactly like what my parents wanted, but I wasn’t convinced that this was the best place for them. Although it provided many amenities, it was a gated neighborhood that didn’t provide transportation, which could be problematic in the future. I did a little more research but didn’t find anything that I liked well enough to suggest without first visiting the property.

April 28. Stan had a bad cold, so I traveled to Temple today without him, arriving at my parents’ home shortly after 10:30 A.M. My mother had been worrying the heck out of me with her stylish shoes that wouldn’t stay on her feet. During the past year, Mom had lost a lot of weight, and now her slimmer feet often stumbled out of her shoes. Sunday had become one of the most dangerous days of the week as her shoes fell off while we walked to and from the church. I had told her that we would shop for some stylish, yet sensible, shoes as soon as I arrived.

After finding the perfect shoes, we dashed into HEB for a few groceries and then went home for lunch. Dad told us that he had exercised four times while we were gone. Because he had “exercised,” he wasn’t willing to walk with the walker.

I had a difficult time hiding my disappointment when Dad told me that he and Mom had decided to stay in their house and not move. Several thoughts came to mind, but for once, I decided to keep my thoughts and concerns to myself. However, I wished that they had told me sooner about this decision so that I wouldn’t have wasted so much time looking for viable options for them.

We ended our evening with a game of Oh Hell, and Mom won.

April 29. Mom and I attended church this morning, which gave her the opportunity to test and show off her new shoes. I still wasn’t able to get Dad out of his wheelchair, so I had to settle for batting .500 during this weekend trip.

Leaving rehab just a tad too soon

Published on August 7, 2018August 6, 2018 by mellowdee551 Comment

April 6, 2018. Today was my last day of employment. After 19 years, one week, and one day with my employer, I had been informed that I was ready to pursue other interests. In anticipation of my employer’s significant US layoffs, I had left Temple last Thursday so that I could be in the office in case I was included in the reduction.

My week in Temple for Dad’s surgery had put me behind in many of my responsibilities at home, so when Stan suggested that we return to Temple tomorrow, I brought up several reasons why I could not leave town for the weekend; besides, he had plans to play golf on Saturday. When he said that we could drive to Temple after golf, I agreed to the trip.

April 7. I hit the ground running and finished my grocery shopping before Stan left to play golf. While he and his friend Mike were playing a couple of rounds of golf, I checked off tasks on my to-do list and was ready to leave town when the guys returned at 2:00 P.M., and we left home shortly before 4:00 P.M.

I had decided that I would not tell Mom that we were coming for a short weekend visit. Knowing her the way that I do, I knew that she would try to tidy up the house or prepare dinner during our three-hour drive. When we were about two miles from Cornerstone, I called Dad. Although he answered his phone, he couldn’t hear me. We continued our drive to the facility and surprised him when we walked into his room. During our 20-minute visit, I adjusted the speaker control on his phone so that he could hear callers. I then called Mom and told her that Stan and I were with Dad and that we would be arriving soon. In the 30 minutes that elapsed before we arrived at my parents’ home, Mom had rushed around the house, trying to tidy up. Truth be told, even when she thought that the house was a mess, it still looked like it was minutes away from a photo shoot for House Beautiful magazine.

April 8. Stan was right to suggest that we visit my parents this weekend. It was obvious to us that Mom was approaching the end of her rope. With Dad away, she wasn’t sleeping well, and she was skipping meals. During the day, she spent most of her time at Cornerstone and then was distressed about not getting anything done at the house. She was also too tired to cook when she got home and had lost weight that she couldn’t afford to lose. During our short visit, I prepared six protein- and carbohydrate-rich single-serve casseroles for her to eat. I didn’t want her to get sick while Dad was in rehab.

April 10. Dad had been the sole occupant of his semiprivate room and had been enjoying his privacy. Although the Cornerstone staff encouraged patients to visit some of the common areas, Dad had no interest in leaving the room except for physical therapy. Today the staff notified him that he would get a roommate on Friday, three days from now. Shortly after receiving this news, he started complaining in earnest about the facility. He didn’t like the therapists, and the room was too small. I agreed with him that the rooms were small, but the rehab stay was supposed to be short, and he could leave his room and spend time in the common areas. Nothing that I said about the facilities and the purpose of rehab seemed to sway his opinion. Dad now seemed to be more concerned about his accommodations and not about his rehabilitation mission.

Dad had his first post-op appointment with the orthopedic surgeon today, and my parents used the services of the Cornerstone bus to get to the clinic. The surgeon wasn’t there, but they met with his physician’s assistant (PA). She told my parents that she could order outpatient rehab for Dad (which he would receive twice each week) and that he could leave Cornerstone at any time.

With the blessing of the surgeon’s PA, my parents decided to check out of Cornerstone before Dad’s roommate was admitted to the facility, and several days short of the recommended two-week stay. Mom assured me that she would help Dad with rehabilitation exercises on the days between physical therapy. The separation was taking a toll on Mom, Dad didn’t want a roommate, and they had decided that they didn’t think that the therapy was helping. I was opposed to their plan, but she said that it was their life, and she was right.

Mom had not eaten dinner last night, and I was relieved to hear that she ate one of the prepared single-serve casseroles tonight. I hoped that she would start taking better care of herself when Dad got home. On the other hand, Dad had been eating well, although it didn’t seem that Cornerstone had been serving him a renal diet.

At 9:45 P.M., I received a call from a Cornerstone employee. She had been trying to call Mom but it didn’t seem to her that the phone number was correct. After telling me the number that she had called, it was apparent that she had transposed a couple of the digits. When I asked her if there was a problem, she said that Dad had slid out of bed and was found on the floor. She went on to say that Dad had been uncooperative, but they helped him back into the bed and he seemed unhurt.

After hanging up, I tried calling Dad at Cornerstone to get his side of the story and see how he was doing, but after the phone rang a few times, I decided to hang up. I didn’t want him to try to get to the phone if it happened to be out of his reach. I called Mom, and she was breathless when she answered the phone saying, “Melody, is it Dad?” The ringing phone had awakened her, but by the time she reached it, the caller had hung up. My call came moments later, and I told her about the call from Cornerstone. Mom said that the incident surprised her, saying that he had been out of bed before to use the bathroom. This incident only heightened my concern about Dad coming home early.

April 11. My parents’ next-door neighbor, Jo, and her caregiver arrived at Cornerstone this morning to help get my father home. My parents called these two women angels, and they were. Mom had not called them; I didn’t know how they knew that Dad was leaving, and I don’t know how Mom would have been able to transfer Dad into the car and then transfer him out of the car and into the house. My parents didn’t have a wheelchair yet, so their friend used an office chair to get Dad into the house from the car.

A representative from American HomePatient, the provider for the wheelchair, called me today. She was trying to call my parents, but their records had my parents’ former phone number, which had changed after my parents returned the last rental wheelchair to American HomePatient.

When I called my parents’ home, Dad answered the phone and told me that Mom was at WalMart. She was shopping for medical supplies that she would need to care for Dad. During our conversation, he told me that he would start receiving physical therapy on April 23, 12 days from now. This news worried me, which seemed to be my default state these days. When I expressed my extreme concern about such a long gap in his therapy, he said that he and Mom were just old people trying to get by the best that they could. So now, in addition to being worried, I was also feeling guilty for questioning all of their decisions.