Shaky progress, but still recovering

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

shakycross2I arrived at Dad’s room at 7:45 A.M. His breakfast tray had arrived and was on his bedside table. He was still sleeping, but I was able to wake him easily. He finished about half of his breakfast before the physical therapist arrived. I never knew if we could expect to see a physical therapist on the weekend and I was pleased that Dad was being seen by a therapist during the holiday weekend. The session got off to a rocky start when the therapist accidentally dumped the contents of Dad’s urine bag on the floor. While she and the nurse cleaned the floor, which took a little over five minutes, Dad was able to sit without assistance on the side of the bed. The therapist was hesitant to have Dad stand up because his blood pressure was a bit low, but eventually, she decided to let him try. After standing, she retook his blood pressure, and it had elevated into the normal range. Because an aide didn’t assist her today, the therapist did not have Dad walk. Instead, she had him sit and stand a couple of times and then do some leg exercises on the bed.

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

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

shakycross3Unfortunately, the effect of the coffee was short-lived, and Dad fell asleep moments before Stan and Mom arrived. Although he was awake when Dr. Hunt, the attending physician, arrived, he was very groggy. When the doctor questioned Dad about why he was in the hospital, he said that he was in Temple because of a broken leg, which was closer to reality than his answers yesterday.

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

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

shakycross3Nephrologists base many of their healthcare decisions on the amount of liquid gold (urine) collected during a 24-hour period. When the nephrologists arrived for their morning rounds, Stan told them about the physical therapist’s mishap with the urine bag. However, they weren’t concerned and said that after taking diuretics yesterday, Dad had voided a liter of urine, so they would not dialize today. Instead, they would check his lab results tomorrow before dialysis to see if his kidneys were removing the toxins and electrolytes in his blood. Because Mom and Dad didn’t like the Scott & White dialysis center, we would need to arrange for Dad to receive dialysis at another location—one that wasn’t conveniently located near their home. This refusal to use the local dialysis center was an inconvenience that they would regret and that I wished that we could avoid. In any event, the nephrology team planned to get Dad started on a Monday-Wednesday-Friday schedule that would continue following his discharge from the hospital.

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

shakycross2At 3:00 P.M., Kayla, Dad’s nurse, set up the creatinine test that had been ordered by the nephrologist. Before she was finished, Maryline, Dad’s aide, entered the room and said that she was going to bathe him. I told her that his toothbrush was in his travel shave kit that was in his closet, so she said that she would also brush his teeth. While Mom and I waited in the 6 North waiting room, Stan drove to Starbucks to get us some coffee. Kayla came and got us at 3:45 P.M. When I went back to Dad’s room, I noticed that his teeth looked shiny and clean.

shakycross3He slept for most of the afternoon but woke up for dinner, although he was still very confused. He kept saying that something was different. We couldn’t figure out what he was talking about and what was different. I wished that he could have given us some clue as to what he was talking about. After he finished eating, Mom, Stan, and I returned home. I said a quick prayer that Dad would get a good night’s sleep. He seemed to be progressing well, but I wanted him to be more awake during the day.

 

A little more recovery and a little less drama

September 1, 2018. My days at the hospital were full of impromptu meetings with healthcare providers and with caregiving activities in between, none of which was really scheduled and all of which was really important for Dad’s recovery and well-being. For me to be present for all these meetings and ensure that all caregiving was taken care of, it was practically impossible for me to leave the hospital to run errands during the day. Also, by the time that Mom and I left in the evening, we were usually too weary to fight the rush hour crowds in the stores. Fortunately, most stores opened early on Saturday, so today I ran a couple of errands on the way to the hospital. Mom stayed at home to wait until my husband, Stan, arrived from Houston. I arrived at Dad’s room at 7:35 A.M. to find that Dad was sleeping and his breakfast tray was on his bedside table, which was not unusual. What was unusual was that his bed was no longer in the center of the room. Instead, it was pushed within a few inches of the outside wall. I suspected that the furniture rearrangement was the result of Dad attempting or succeeding to get out of bed last night.

He was easy to wake, and I was glad that he was no longer fixated on the annotation on his bandages. However, within a few moments of waking, he became fixated on “one day’s paper,” a topic that I could not understand, and I could not divert his attention elsewhere.

morerecoverycross1I was glad when Dr. Blake Tanner, the nephrology resident, entered the room, thinking that Dad might turn his attention to another subject. However, I was a bit disturbed when he could not answer the doctor’s questions about where he was or the year, which were daily questions to ascertain mentation. Dr. Tanner said that they would hold off on dialysis and diuretics today to see how Dad’s kidneys functioned. In one of the days where they gave him diuretics, Dad voided 300 ml of urine; on a day without diuretics, he voided 350 ml, so they wanted to see how his kidneys functioned today. Depending on today’s results, they might dialyze him tomorrow. The doctor checked for swelling in Dad’s legs, but they still seemed to be fine. He said that they were waiting on the results of the morning labs, but he didn’t think that they would see anything that would alter their plan. They hoped that the Midrodine would elevate Dad’s blood pressure enough to get the kidneys to produce more urine.

Now that Dad was fully awake, I wanted him to eat. Because he was low in his bed, I used the call button to summon someone to help me adjust him in the bed so that he could eat. His sheets were also wet from wound seepage, which I also wanted to be addressed.

img_0030After waiting for 35 minutes, Storie and Miguel, the nurse and aide (CNA) entered Dad’s room. When I asked about the location of the bed, Storie told me that they had been told that they could not move the bed back to the center of the room because Dad was a fall risk and an escape artist. While they were changing Dad’s gown and adjusting his position in the bed so that I could raise the head of the bed, I ran downstairs for a cup of coffee.  When I returned, I heated up Dad’s breakfast and started to feed him, but he fell asleep before we had made much progress. He still needed to take his morning meds, which was an ordeal when he was half asleep. Fortunately, he still had some Cream of Wheat in his bowl, and Storie was able to crush his pills and mix them in the warm cereal. He made a face as he took the nasty concoction, but at least we were successful in getting the pills in him without him choking on a liquid while trying to swallow the pills. By 9:10 A.M., Dad was sound asleep.

Five minutes later, he was wide awake and wanted to drink his Nepro. He was able to hold the container of Nepro without spilling it, which was an improvement from yesterday. His dexterity suffered when he was in the hospital, and the presence of the oximeter on his hand didn’t help matters. He nibbled at most of his breakfast, but I was pleased that he drank all of his Nepro. By 9:30 A.M., he was sleeping again. It was almost startling how quickly he could wake up and fall asleep.

glacialspeedcross2At 11:45 A.M., Miguel took Dad’s blood sugar and it was 42 (normal is 100), which prompted him to call the nurse.  Storie entered the room with Shelly, another CNA, and had him drink a couple swallows of orange juice. Shelly then had the nearly impossible task of getting Dad to consume a tube of a substance similar to Karo syrup. He hated the taste of it and she practically forced it into his mouth.

At noon, his lunch tray arrived, and Stan and Mom arrived a few minutes later, at 12:15 P.M. While I updated them on the events of the morning, Miguel returned to recheck Dad’s blood sugar. It was now up to 73, which was still very low, but it was no longer dangerously low.

morerecoverycross1At 12:45 P.M., Mom and I left Stan with Dad while we drove a few blocks to Chick-fil-A. The nephrology team entered the room at 1:00 P.M., followed by Bonnie, the physical therapist. I knew that the nephrologists’ visit would be short, and I asked Bonnie if she could wait. She said that she didn’t have time to wait and left. I hated that Dad might miss a physical therapy session and hoped that she would return soon.

I was relieved when Bonnie returned, but we were unable to wake Dad. Thinking that it might be his blood sugar, she summoned the CNA to recheck it, but it was now up to 101. She eventually left.

I had been working on an embroidery project, but the new room rearrangement made it impossible to work in Dad’s room. Now that Stan was here, I felt that I could leave the room, so I moved out to the 6 North waiting room. At 2:15 P.M., Stan came to the waiting room to tell me that they were giving Dad some albumin to increase his blood pressure. Dad had been pretty drowsy today, and I hoped that the albumin would help him stay awake.

glacialspeedcross1At 3:15 P.M., the nurse pulled out Dad’s central line on the left side of his neck, which had been replaced by the tunneled line yesterday. He added that Dad’s blood pressure was 113/65, which was good.

At 4:00 P.M., he started receiving Lasix, a diuretic, which meant that something had changed to make the nephrologists change their minds about holding diuretics today. Right around that time, the hard disk failed on the computer in Dad’s room, which was very inconvenient for the nurses, who now had to use the computer in the room next door to access and update Dad’s chart. Because it was Saturday, and a holiday weekend, the nurses didn’t hold out much hope for getting the computer fixed, although they had a few conversations with the IT support person who was on call.

At 5:30 P.M., in preparation for his dinner, I asked Shelly, his new nurse, to reposition Dad in his bed. At 5:45 P.M., Stan and Mom went home to start preparing our dinner while I stayed to help Dad with his dinner. I thought that feeding Dad would take only a few minutes, but I was very wrong. He was talkative and asked dozens of questions about his condition. He was able to eat and swallow well, but the talking slowed the progress. When he had finished his dinner, he wanted me to stay and review his situation and plans with him. Stan texted me a couple of times to see if everything was OK.

morerecoverycross1Dad was still very confused, but our conversation was light and humorous and eventually centered primarily on his catheter, of all things. He had been concerned that he was being forced to stay in bed and didn’t realize that he had a Foley catheter. I eventually left the hospital around 7:00 P.M. I found his night nurse and warned her that in spite of my best efforts, Dad had slept for most of the day and that he was wide awake now. She groaned as I left and I wished her luck. I was glad that we had had a good talk and I prayed that it would be a good night for Dad.

 

 

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

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

transitionCross1At 8:15 A.M., Conner, Dad’s nurse, entered Dad’s room for the first time since the shift change at 7:00 A.M. Following our introductions, she accessed Dad’s chart and told us that Dr. Jennifer Moran, the attending physician for 6 North, had asked for someone in Orthopedics to look at Dad’s surgical wound vac. It had been in place for more than five days, and it seemed to the doctor that it might be clogged. When I asked her if Dad was scheduled to receive physical therapy, she said that only speech therapy was on his schedule, but she would ask for physical or occupational therapy today.

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

transitionCross2I had barely finished speaking with Conner when someone from the Transportation team arrived to take Dad to IR. I should have learned a long time ago that schedules in the hospital were fluid and much like those of remodeling contractors. To help the Transportation aide prepare and move Dad to the gurney, Conner summoned Miguel, Dad’s aide (CNA). I learned then that Dad had indeed remembered reality and that it was Miguel who had interrupted Dad’s sleep early this morning.

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

transitionCross2One of the interventional radiologists is a member of FUMC-Temple, my parents’ church. I was pleased when I saw that it was Dr. Dollar who entered Dad’s bay. I reminded him that Dad had been a patient of his twice before and told him that Mom and I had attended his daughter’s confirmation. We joked that the pastor would give the doctor hell if the procedure didn’t go well. Before Mom and I left Dad, Dr. Dollar mentioned that because the attending physician wanted to know if Dad had Heparin-induced thrombocytopenia (HIT), they would test him for that. Because Dialysis patients usually received Heparin before and during dialysis to prevent blood clots, they could develop HIT over time. We woke Dad, kissed him, and let him know that we would be waiting in his room for him. At 9:20 A.M., Kristi, the IR surgical nurse, wheeled Dad from his bay and Mom and I found our way to the x-ray waiting room.

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

transitionCross2At 10:25 A.M., Mom and I walked back to the x-ray waiting room to check on Dad’s status. We were told that they were almost finished and that we could wait there to speak with the surgical nurse. A few minutes later, Kristi, who had assisted Dr. Dollar, said that they were able to remove the clot and that he should be able to have dialysis at any time, which was excellent news. Because this procedure had been successful, Dad would not require another procedure to insert a dialysis catheter, which could have increased his odds at contracting an infection.

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

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

transitionCross1Mom and I left for lunch at 11:30 A.M. so that we could get back to Dad’s room before he went to dialysis at 1:00 P.M. However, when we arrived at Dad’s room at 12:45 P.M., he was already gone. At 1:00 P.M., Conner stopped by Dad’s room. She told us that she had just returned from accompanying him to the dialysis room, and would be glad to take us there so that we could be with Dad. I had a deadline to attend to and opted to stay in Dad’s room while Mom went to sit with Dad.

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

transitionCross2At 3:40 P.M., Dr. Potter and Dr. Murdette stopped by to check on Dad’s fistula. Dr. Potter is Scott & White’s new transplant surgeon and had replaced Dr. Gregory Jaffers, who had recently retired. The transplant team performs the fistula surgery, and Dr. Jaffers had performed Dad’s fistula surgery in 2016. Dr. Potter said that he had been in surgery all day and hadn’t had a chance to see Dad and had hoped to meet him. I assumed that Dr. Potter had heard about the clot in Dad’s fistula and thought that he should meet him should he have to repair the fistula. I told him that the IR procedure had gone well and that Dad was having dialysis now.

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

transitionCross1Dr. Moran stopped by at 6:15 P.M. I expressed my alarm at Dad’s elevated WBC count, but she didn’t think that it was an issue because he didn’t have an elevated fever and his blood pressure was good. She told me that today was the last day of her rotation. Starting tomorrow morning, Dr. Hunt would take over as the attending physician. If Dad was developing an infection, she said that Dr. Hunt would be a good attending physician for Dad; in addition to being an internist, he was also certified for infectious diseases.

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

transitionCross3I had only planned for a short trip to Temple for Dad’s surgery on August 22, and I was now out of clean clothes. It seemed like my trip would be extended for some indeterminate time, so I had to wash some clothes before I could go to bed. I was tired and frustrated and capped off my evening by being a jerk and snapping at my exhausted mother.

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

 

 

Holding steady in the ICU

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.

steadyCross1Mom 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.

hip3At 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.

hip1Just 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.

steadyCross2I 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

. 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.

swapCross1I 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.

badRehabCross2While 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.

swapCross2When 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.

swapcross3Stan 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.

hip3Mom 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

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.

hip5A 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.

hip3Dad 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.

hip1After 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.

home4Cross2I 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.

home4Cross3Around 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.

home4Cross2I 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.

home4Cross2The 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.

home4Cross3As 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

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.

hip4August 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.

hip1Moments 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.

hip2An 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.

hip3With 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.

hip5Dad’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.

hip1We 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.