Little victories and setbacks during recovery

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

pushmecross5When Mom woke up at 6:00 A.M., she said that she was exhausted and that she was frustrated that she didn’t have time to do anything around the house. Last night, Stan and I had talked about trying to get Mom to stay at home and rest, so I took this opportunity to suggest that she stay at home this morning, and I would bring her with me to the hospital after lunch. She gratefully accepted my offer.

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

pushmecross4Dr. Tanner, one of the nephrology residents, stopped by this morning and confirmed what the nurse had told me yesterday afternoon. Because of Dad’s low blood pressure, they were unable to remove more than 500 ml of fluid yesterday during dialysis. He said that they were going let Dad’s body rest today and perhaps try another dialysis session tomorrow. Wasn’t it just yesterday that I had prayed that Dad could maintain enough blood pressure to keep removing this excess fluid?

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

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

pushmecross2At 11:00 A.M., Katherine, the occupational therapist, arrived. She had barely started getting information from Dad when Amber, the physical therapist, and her student, Shelby, arrived. The room became a hubbub of activity when the nephrologist also arrived. It was positively uncanny how all of the care providers seemed to arrive at the same time. Thankfully, the nephrologist stopped by, only to confirm what Dr. Tanner, his resident, had said earlier. I was glad that his visit was brief. I was eager for Dad to get started with his physical and occupational therapy.

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

pushmecross1Amber and Shelby were able to get Dad to sit on the side of the bed. While he sat on the side of the bed, Katherine exercised his arms and checked his toes and legs. Katherine and Amber then worked together to get Dad to stand up, with me cheering him on from across the room. By 11:20 A.M., Dad was exhausted and ready to lie down.

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

pushmecross3So far, I’d seen everyone today that I wanted to see, with one exception: I had not seen Dr. Hunt. However, it was now 11:40 A.M., and I needed to get home for lunch. After a quick lunch, Mom and I returned to Dad’s room at 12:50 P.M. When I reached out to touch his right arm, I noticed that his gown was damp on his right shoulder. When I mentioned the damp gown to Aspen, she said that while I was gone, they tried to give him a pill and some water had spilled on his gown. I don’t know if I could swallow a pill while slumped down in bed, especially if I was in a groggy and confused state. I didn’t question her more, but I assumed that he was able to swallow the pill.

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

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

pushmecross4At 3:15 P.M., a couple of doctors from the hematology/oncology department visited us to talk about some of the problems that Dad might be having with heparin and HIT. They said that sometimes they could substitute Argatroban for the heparin, but in Dad’s case, they thought that this drug was too harsh. Because Argatroban is metabolized in the liver, it would be too hard on Dad’s liver, which had been under stress during this hospital stay. They said that they also had been viewing Dad’s white and red blood cells under a microscope and had noticed a slight change in their shape, which might indicate the start of a cancerous condition. However, the only way that they could know for sure was to order a bone marrow test, and we all agreed that at Dad’s age, we didn’t need to go down this path. They speculated that his liver problems probably started with the sharp drop in his blood pressure the day after his latest surgery. Although his blood pressure had rebounded, it would take more than a few days for the liver to recover.

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

 

 

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

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.

 

 

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

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.

hip1At 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.

hip3At 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.

home4Cross4Shortly 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.

hip5Dad’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.

steadyCross2When 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?

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.

steadyCross1Dad 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.

hip1Because 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.

hip2When 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.

hip5At 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

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.