The good, the bad, and the sad

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hospitalbedAugust 3, 2015. It had now been 90 days since Dad first entered the hospital for his seven-to-ten day stay. When Mom and I arrived at 7:45 A.M., Dad’s room was a hubbub of activity. Dr. Phan, the nephrology resident, was assessing him and Emily, his nurse, was exercising his arms and legs. But the first thing that we noticed was Dad’s bed. Yesterday, Dr. Jimenez had told Dad’s nurse that he wanted to see Dad’s bed raised to a more upright position. I had envisioned that the angle of his bed would change from 30 to 75 degrees. What we saw instead was a bed that had morphed into a chair. It played music, automatically adjusted to specific angles, and could change into a chair. Was there anything that this bed couldn’t do?

Emily greeted us with a mixed bag of information. She told us that Dad had been off all of his vasopressors since 1:30 A.M. and that Dad had squeezed the doctor’s hand this morning in response to a verbal command. On top of that good news, the respiratory therapist had switched over his ventilator to CPAP, so Dad was now breathing on his own. I would have been over the moon, except his WBC count was now 19.7, which was up from 18.0. I was obsessed with his WBC count and noticed that it had been inching up for the past two days.

Under normal circumstances, the attending physician starts on Friday; however, life at the hospital had been anything but normal. Two weeks earlier, the director of the Medical ICU died in a freak accident at his home in Salado. Aside from the loss of an extremely well-liked coworker, the doctors’ schedules were shuffled to fill the administrative duties left by his passing. This shuffling of schedules resulted in the early departure of Dr. Jimenez and the early arrival of Dr. Yau as the new attending physician.

Dr. Yau said that he would order a CT scan to see if Dad had an infection outside of his lungs that could be drained, which would help lower Dad’s WBC count. On a more positive note, he said that it seemed that Dad’s kidneys had finally decided to wake up and start making urine. The day seemed to be going better than I could have expected. I hated to leave, but I had to return to my parents’ house to attend a noon meeting for work.

Shortly after I got home, my day started taking a downward turn when the internet service stopped working. With the internet being my primary connection to my job, I didn’t accomplish much for the remainder of the day.

Things weren’t going much better in my father’s room. From what my mother observed, Dad would not stop pulling on his feeding tube, CPAP connector, and trach tube. Mom was also upset because it seemed to her that Dad didn’t recognize (or acknowledge) her. Even worse, he seemed to regard her with some contempt, although he seemed pretty happy when the nurse was in the room. Because he was unable to communicate with us, we were very confused about his behavior and what he was thinking.

xmas2014While Mom and I were at home for dinner, I printed out some recent photos of Dad with the family. I wanted the hospital personnel to see him as more than the sick man that they attended in that hospital bed. He hadn’t entered the hospital as some sickly old man, and I wanted them to have a sense of who he was just a few months earlier. After dinner, Mom and I returned to the hospital around 6:50 P.M. and learned that Dustin was Dad’s nurse. I wasn’t impressed with this nurse, and I wasn’t thrilled to see him again.

Dad seemed agitated again. In an attempt to calm him, I held his hand and talked to him for about an hour. He seemed to be calming down when the respiratory therapist stopped by to administer the oral treatment, but as soon as she left, Dad vomited. With his history of aspiration, I was a little freaked out. I quickly grabbed a nurse in the hall, and she got Dustin, who was seated at the nurses’ station. I wondered if he had been agitated because he felt nauseated. I’d never know.

After contacting the on-call resident, they decided to stop Dad’s tube feed for the remainder of the night. The doctor also ordered an x-ray and the nurse pulled out all the remaining fluid in Dad’s stomach. It seemed disgusting, but with the feeding tube, the nurse could use a syringe to withdraw the Nepro in his stomach. They occasionally suctioned his stomach contents to see how fast the tube feed was being absorbed by his system, and then they’d return the Nepro into his stomach. Something that once might have seemed pretty disgusting now was part of our daily routine.

At 8:25 P.M., Dustin and another nurse repositioned Dad and adjusted the back of his bed to a 45-degree angle. Tube feed-patients were usually kept at a 30-degree angle, so Dad was now a bit more elevated than usual.

As Mom and I were leaving for the night, Dustin told us that they would x-ray Dad sometime around 3:00 A.M tomorrow morning to see if he had aspirated anything when he vomited.

In addition to 90 days being a long hospital stay, it also marked the end of his annual insured Medicare days. From this point forward, he’d be drawing against his one-time reserve of 60 days. Surely he’d be home in less than 60 days.

August 4. Mom and I arrived to Dad’s room at 7:45 A.M. Dr. Brett Ambroson, one of the residents, was assessing Dad.  He provided us with a brief update about the CT scan and x-ray, assuring us that Dad had not aspirated the Nepro last night. He also confirmed that Dad was still off all of the vasopressors. Shortly after Dr. Ambroson left, Dr. Adam Hayek, one of our favorite fellows, stopped by to see if we had any questions. While he was in the room, Dr. Hayak mentioned that Dad had vomited again during the night, so until the doctor stopped by on his rounds, the tube feed would be withheld.

For the first time since his readmittance to the hospital, Dad motioned for me to give him a kiss, and he smiled at me.

At 11:00 A.M, Travis, the physical therapist, stopped by to see if he could get Dad into a cardiac chair. Travis couldn’t find a cardiac chair, so he tried to get Dad to the side of the bed. Dad was pretty weak, and Travis had one heck of a time moving Dad. Fortunately, Heather, another physical therapist, stopped in to help him. Dad didn’t actually sit on the side of the bed, but they established a baseline of Dad’s strength. Travis said that he’d try to find a cardiac chair for Dad later in the day. I didn’t know what a cardiac chair was, but if Dad could barely sit on the site of the bed, I didn’t understand how he could get into a chair.

Just before we left for lunch, Pastor Don stopped by for a short visit and a much-needed prayer. Although Dad had seemed happy to see us, I wasn’t feeling as positive this morning about his status as I had been just 24 hours earlier. Although Dad’s condition was no longer grave, it was guarded, which diminished my anxiety only slightly.

As mom walked back into Dad’s room after lunch, Dad was pulling out his feeding tube again. Mom alerted Chris, the charge nurse, who secured the tube with a little tape and some glue.

Dr. Howell stopped by and said that the antibiotic that Dad was taking was very strong and that they wanted to hold it in reserve and not use it unless absolutely necessary. He added that it could take as much as four weeks to clear up the infection. Four weeks. That was over half of our remaining Medicare coverage time. I wondered if Dad would have to remain in the hospital until the infection was gone. His WBC count had inched up again overnight, and I was becoming more anxious about this infection.

At 3:30 P.M., the nurse gave Dad some Zofran for nausea, and told us that the tube feed would resume later that evening.

I had been at home working since lunchtime and returned to the hospital at 6:30 P.M. Sarah, the night nurse, came in at 7:05 A.M. to perform her evening assessment. Dad didn’t respond well to her commands, but I had a sense that he could if he wanted to. He was very frustrated and it seemed to me that he was losing his will. I talked to him for a long time, but I didn’t think that I made much progress with him.

Since Dad had become aware of his surroundings, we had talked to him about what was going on around him and the state of his health, but we had not told him what had happened to him at the CCH. For him, it probably seemed like one minute he was in dialysis and the next minute he was waking up in the hospital, hooked up to machines and unable to communicate. Stan, Mom, and I agreed that we should tell him what happened. Maybe tomorrow.

He’s one tough guy

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August 1, 2015. When Mom and I arrived at the hospital at 7:45 A.M., the respiratory therapist was administering oral care to Dad. Shortly after she left, the nephrology fellow stopped by to check Dad’s status to determine whether he would need dialysis. He noted that Dad’s feet were very swollen, which prompted Shannon, his nurse, to remove his leg massagers, which had been present since his readmittance.

sflowerI had never heard about procalcitonin (PCT) until today, when Dr. Jimenez mentioned that Dad’s current level was 48—down from 64. As soon as the doctor left the room, I whipped out my iPad and searched the internet for information about PCT. From what I read, a PCT level greater than 10 indicated a “high likelihood of severe sepsis or septic shock.” You didn’t have to be a PhD to know that a PCT level of 48 was pretty bad.

Dad’s blood pressure was all over the place, and Shannon had a tough time finding the sweet spot with Dad’s vasopressor dosages. A couple of times, his blood pressure skyrocketed, and then after the vasopressors were reduced, it would plummet. It seemed like the monitor would never quit alarming.

Stan left Houston earlier this morning, arriving at the hospital around 11:20 A.M. We spoke on the phone every night, but I always looked forward to seeing him arrive for his weekend visits.

Something about the sound of Dad’s breathing bothered me. To me, it sounded like he was breathing under water. We called for the nurse, who then called the respiratory therapist. It seemed that Dad’s trach tube had a leak. After a couple of visits, the respiratory therapist was able to patch it.

Dad seemed to be becoming slightly more responsive. During the past few days, Dad had been oblivious to anything that was done to him. Today, I stayed by his side during some of the daily procedures and held his hand, and he kept a vice grip on my hand during a couple of the visits from therapists. I couldn’t tell whether he was in pain or scared, but he was somewhat aware. He still wouldn’t follow verbal commands, but he was withdrawing to pain in his feet. I still cringed whenever they inflicted pain to test his responsiveness.

During one of his long naps, I reviewed the copious notes that I had been keeping about Dad’s hospital stay, and I composed a letter to Amiee McIlwain in Patient Relations about the nurses who had provided exemplary care for Dad. We had voiced several complaints during her visit with us and Mom and I wanted her to know that we weren’t just complainers. We knew good care givers when we saw them, and we were pleased to acknowledge them.

As I was preparing to leave for dinner, Dad’s blood pressure resumed its roller-coaster behavior. Shannon had little trouble controlling it, and I left at 4:30 P.M. when I felt that Dad was somewhat stable.

When Mom and I returned to the hospital after dinner, Dad was resting comfortably. He was still receiving a vasopressor, but the dosage was minimal. We met with Rebecca, Dad’s night nurse, and stayed until she ran through her initial assessment of him. She tried her best to perform a neurological assessment, but he was nonresponsive. After he had seemed somewhat responsive earlier in the day, seeing him this way was disheartening.

Mom and I went home shortly before 8:00 P.M. We were familiar with Rebecca and we felt that Dad would have a reasonably good night. My cell phone number was written on the dry-erase board in Dad’s room. Every night as I left the hospital, I hoped that they would have no reason to use it.

August 2. Mom and I arrived to the hospital earlier than normal for a Sunday, which was fortunate because Dr. Jimenez also stopped by early. Eavesdropping was my strategy for obtaining information. This morning, while standing on the threshold of Dad’s room, I overheard an interesting conversation in the hall between the good doctor and one of the residents. After the resident reviewed Dad’s lab work, particularly the PCT count, he offered a pretty poor prognosis for my father. The doctor told him that although Dad’s PCT was still very high, he had to look at the trend, and in the period of two days, my father’s PCT count had dropped from 64 to 38. Dr. Jimenez then said, “This guy is turning around.”

miraclesWhen Dr. Jimenez and his entourage entered the room, he said that Dad was “one tough guy.” He said something about an albumin transfusion (protein) to help with absorption, but I was too excited to remember everything that he said. Mom and I knew that Dad was still in the woods, but we felt that he had finally found the path out. Before the doctor left, he told Melissa, the nurse, that he wanted the bed raised to more of a sitting position. This day also marked the first day since my father’s return that we didn’t hear something about his grave prognosis.

Melissa tried lowering Dad’s already-low dosage of Levophed, but his blood pressure dropped sharply shortly after she left the room. After I called for her, she struggled to raise his blood pressure to a minimally-acceptable level. By the time that Stan arrived at 10:00 A.M., Dad was stable again, but his Levophed dosage was back to where it was when we had arrived.

While Mom and I were at home having lunch with Stan, Pastor Don stopped by the hospital to see Dad and say a prayer; we were now big on prayer. When Mom and I returned to the hospital at 1:30 P.M., Stan headed back to Houston. Shortly after we returned to the hospital, the respiratory therapist told us that they were going to try to move Dad from CPAP to BiPAP respiratory support. It seemed like there was suddenly a flurry of positive activity around Dad, and it felt good.

The downside of Dad’s improving mentation was his increased agitation. He repeatedly lifted his arms and pointed, and then looked concerned. We were pretty certain that he was hallucinating. Because he was unable to communicate, we couldn’t tell what he was seeing or thinking. We spoke with the nurse about his apparent hallucinations, and after consulting with the doctor, she increased his dosage of Fentanyl to help him sleep more. We didn’t like the idea of keeping him stoned, but we didn’t want him to decannulate himself or pull out his feeding tube.

When we returned at the hospital after dinner, we met Maggie, Dad’s night nurse. She was a high-energy woman, and I liked her immediately. She mentioned that she had helped Rebecca bathe Dad the previous night. Before we left, she stretched his arms and feet, something that I would try to remember to do for him in the days following.

Dad was still receiving a minimal dosage of Levophed, and his blood pressure and other vitals seemed pretty stable. He woke up a couple of times before we left and seemed to be seeing more hallucinations.

Maggie was assigned only one other patient, and we left at 8:00 P.M., feeling relatively positive that he would have a good night, unless he woke up to more hallucinations.

 

We’ll take your danged ten percent odds!

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July 30, 2015. Mom and I arrived to the hospital shortly before 8:00 A.M. When I asked Katrina, the nurse, about the results of his early-morning lab work, she told me that EPIC, the medical records system, was down, and that they didn’t draw blood this morning. It was amazing how the hospital seemed to operate in slow motion without the computer system. Nothing escaped being logged into the computer, so, with no computer access, when tests were requested, someone had to physically carry the orders, and then the specimens, to the lab.

Dr. Pan, the nephrology resident, stopped by to tell us that Dad would receive dialysis again today. They removed slightly more than two liters from him yesterday during dialysis, but Dr. Pan said that he still had some edema. He also told me that tomorrow Dr. George would replace Dr. Issac as the nephrologist.

Because of Dad’s pH imbalance, low blood pressure, and whacked-out blood gases, he had been sporting an arterial line (a-line) since he aspirated at the CCH eight days earlier. The doctor wanted to remove the a-line, but only if similar blood pressure readings were obtained from the blood pressure cuff. Katrina ran a test and it seemed as if the results were the same. With these results, they might pull the a-line later today, as long as they were through taking ABG tests.

While Mom and I were holding Dad’s hands, he became slightly agitated. I told him that until he could talk, he’d have to tell us that he loved us by squeezing our hands. Right away, he squeezed our hands. It was really the first time that we had had two-way communication with him. Dad then seemed to become confused and scared. I held his hand and tried to explain that he was back at the Memorial hospital.

Dr. Brett Anderson, one of the residents, stopped by to tell us that Dad would go to radiology this morning at 9:00 A.M. for the MRI. Dad was hooked up to a roomfull of equipment, so transporting him to the radiology department would be an ordeal. In preparation for the move, Mary, the respiratory therapist, arrived with a portable ventilator. We remembered each other from Dad’s earlier stay in the north tower.

While the nurse was prepping Dad for the move, and the transportation tech was tapping her foot, Holly from the speech pathology department stopped by to say hello and check on Dad. The transportation tech and nurse finally transported Dad and his paraphernalia at 9:15 A.M.

Shortly after Dad left, Pastor Don stopped by and stayed for about 30 minutes. Before he left, he said a much-needed prayer for Dad. Dad was returned to his room at 10:30 A.M. He seemed to tolerate the MRI pretty well.

Around noon, Katrina noticed that Dad’s feeding tube was clogged. She tried to unclog it but was not successful. Pulling out the tube woke him, but only for a couple of minutes. The process of inserting a new tube, having it x-rayed, and then having the x-ray reviewed would take some time. It seemed like a good time to take a lunch break. Mom returned to the hospital at 1:15 P.M. Because I needed to work, I stayed home for the remainder of the afternoon.

Shortly after Mom returned to Dad’s room, Dr. Burkholder, the neurologist, stopped by to give her the results of Dad’s MRI. In a nutshell, Dad’s prognosis remained guarded because of his myriad medical issues, but the doctor didn’t see any neurological limitation to Dad’s recovery. He did add that the degree of low blood pressure that Dad had sustained would most likely impact Dad’s neurologic recovery. He concluded his meeting with Mom by telling her that although Dad didn’t seem to have any permanent damage, he might not return to his baseline state in terms of intelligence. I wasn’t really sure what they knew about his baseline intelligence, so I wasn’t sure how to process that remark.

Before Mom left the hospital at 4:15 P.M., Dad had another EKG. Mom and I returned to the hospital at 6:40 P.M. I noticed that Dad had a new feeding tube, but it wasn’t bridled. I hated the bridle, but without it, I feared that Dad would pull out the tube.

I noticed that his Levophed dosage had been increased slightly, but was pleased to see that the oxygen setting on the ventilator had been reduced to 40%, which meant that he didn’t need as much oxygen support.

At 7:15 P.M., we heard that the EPIC system was back online. You could hear a subdued cheer from the nurses throughout the unit. Shortly after hearing that all was right with the world again, we met Jennifer, Dad’s night nurse.

Dad’s MAP (blood pressure) had been hovering around the low 60s, so Jennifer increased his Levophed dosage a couple of times. At 8:05 P.M., his blood pressure dropped again and this time she increased the dosage significantly. I heard her call pharmacy to see about adding another vasopressor.

While the respiratory therapist was administering oral care, Jennifer told us that she was adding another vasopressor to help control Dad’s blood pressure because he was now receiving more than the maximum dosage of Levophed. After she added the second vasopressor, she decreased the dosage of the Levophed. This day had been tedious and Mom and I were exhausted. We left for the night at 8:40 P.M., shortly after the respiratory therapist left.

July 31. Another Friday; another new set of attending physicians. Mom and I arrived at the hospital at 7:45 A.M. According to his nurse, Shannon, blood was not drawn this morning. When I asked her about his night and his status, she said that he was still on two vasopressors, but Jennifer had been able to reduce the dosage slightly. She said that Dad would open his eyes, but his eyes would not follow her hand and he wouldn’t respond to commands.

We met this week’s attending nephrologist, Dr. George. Mom wasn’t thrilled with her because she sounded too negative about Dad’s situation. Dad didn’t have much swelling today, but he was still somewhat acidosic, and dialysis could help. Dr. George’s visit was followed by Michelle, the dietitian. She wasn’t pleased with Dad’s nutritional intake and recommended that his Nepro volume be increased to 45 ml/hour.

Dad seemed to be in a bit of distress. I thought that he sounded gurgly, so we had Shannon call the respiratory therapist, Holly. While she was there, Holly repositioned Dad’s trach tube, adjusted the pressure on the ventilator, and suctioned his trach a little.

Wynn, our friend who works in the chaplain’s office, arrived for a short visit around 9:15 A.M. While she was here, we heard a loud bang outside the window that sounded like scaffolding breaking. Since Dad’s initial admission in May, the hospital had been in the process of removing an expensive copper façade and replacing it with ugly siding. As they progressed, the workmen covered up the patient windows, which made the rooms gloomy. We didn’t hear profanity from outside, so we assumed that no one was hurt.

familyShortly after 10:00 A.M., we met Dr. Edgar Jimenez, this week’s attending physician. He said that they were going to change Dad’s antibiotic to something stronger to battle the strong bug that Dad had in his lungs. He then proceeded to tell us that Dad’s situation was grave, and that he had no more than a 10% chance of survival. As Mom and I stood  to the side of Dad’s bed, holding on to each other, I told the doctor that when I was 14, the doctors told my parents that I would die from peritonitis, and that two months ago, the doctors had told me that my mother might never talk again. I told him that we’d overcome worse odds, and that 10% sounded pretty good to us. He looked at us for a moment and then to his entourage, and said, “OK; they’re a strong family,” and they left the room. Truth be told, my knees were wobbly and I felt a little nauseated.

Mom and I had heard about Dad’s 90% mortality prediction since his arrival some 10 days earlier. Much later, I learned that they used something called the Apache IV mortality scoring system, and Dad had scored poorly.

silksuns_thumbWhen Dad was transferred from the CCH to Memorial, his flowers could not come with him. Cut flowers and plants are not permitted in the ICU. I had been thinking about it for a couple of days, and I was now determined to brighten up Dad’s room. After lunch, I cleaned the vase that had held his sunflower arrangement, took it back to Precious Memories, and asked if they could recreate the arrangement with silk flowers. The florist helped me to find the perfect flowers, and they made an outstanding replica of the original arrangement. The bouquet raised a couple of eyebrows, but the charge nurse assured me that artificial flowers were permitted, although they had never seen them before in the ICU.

Shortly before his dialysis was over, Dad’s blood pressure started falling, and his MAP dropped to 54. The nurse increased his vasopressors, and as soon as dialysis was over, his MAP spiked to 118. Shannon finally got his blood pressure stabilized, and moments later, Dr. Fernandez arrived. Dad had had a femoral a-line in his left arm for quite a while. Instead of removing the a-line as originally planned, the doctor wanted to start a new a-line in his right arm so that they could remove the current one from his left arm. This type of procedure required a sterile environment, which meant that Mom and I went to the ICU waiting room. We sat in the waiting room for an hour before the doctor was finished. When Mom and I returned to Dad’s room, it was a bloody mess. Doctors make the messes and the nurses clean up after them. Dad still had the left a-line, but Shannon removed it after she made some sense out of the chaos in Dad’s room.

Mom and I drove in separate cars, and she went home immediately after the procedure. I stayed around for a few minutes more, and left at 5:30 P.M. When I got home, Mom and I picked some fruit and vegetables from their garden and fruit trees, one of the few normal activities in our lives.

I had been posting some updates about Dad’s condition on Facebook, but Dad’s condition was so volatile that the posts had become few and far between. During dinner, Earline, a dear family friend of some 60+ years called to get a more recent update about Dad. After the day that we had had, Earline couldn’t have timed her call any better.

Mom and I arrived back at the hospital at 7:25 P.M. I had prayed for it, and my prayers came true: Tyler I and Tyler II (the nurse and respiratory therapist) were assigned to Dad. Mom and I were overjoyed and I was so relieved to see him that I had to hug Tyler as soon as we entered Dad’s room. We stayed until 8:30 P.M., and left the hospital knowing that Dad was in good hands for another night.

 

Still waiting to exhale

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interlockingJuly 28, 2015. Six days since Dad returned to Memorial. The good news was that Dad was still with us. The bad news was that the doctors didn’t sound very hopeful about his recovery. Most of the positive feedback came from the nurses, and they weren’t doing cartwheels. Perhaps it was my imagination, but I thought the doctors, including Dr. White, were placating us. On the morning after Dad aspirated, I was advised by Dr. Anderson to let Dad die. I couldn’t shake the feeling that the doctors thought that we had made an ill-advised decision to continue with his aggressive treatment.

When Mom and I arrived at the hospital, we were pleased to see that Andrea was his nurse again. She was Dad’s nurse when he was readmitted to Memorial, and she was a terrific caregiver. She told us that Dad had briefly opened his eyes when she spoke to him earlier.

I asked Andrea about the results of his lab work, and his WBC count was up from yesterday, which meant that his body was still waging war against some infection. Shortly after our conversation with Andrea, the parade of residents started.

Dr. Pan, the nephrology resident, stopped by, quickly assessed Dad, and said that they did not need to dialyze him today.

Dr. Hidalgo, the neurology resident, stopped by and said that Dad’s ammonia levels were high, which might have an effect on his lack of responsiveness. Dad’s MRI was scheduled for later in the morning, and the doctor said she’d get back to us with the results of his MRI as soon as the test was finished.

The nurse manager stopped by to check on Dad’s feet and was surprised at how good they looked. The fact that the circulation had returned to his extremities was the best news that we’d received since his readmittance to Memorial. The wound care tech stopped by to look at his toes, and reduced the elevation of his feet.

Dr. Haenel, the hematology resident, stopped by and said that Dad’s platelet count was 27 (thousand), which was up slightly from yesterday. Although his platelet count was still very low, it seemed that it was stable for now, and he would not need a transfusion today. She said that they’d be watching his platelet count for any changes.

Dr. White and his entourage stopped by at 10:15 A.M. Not surprisingly, the good doctor was still very guarded about Dad’s prognosis but was mildly pleased that he had opened his eyes. Because pain killers can affect responsiveness, the doctor said that they would decrease Dad’s dosage of Fentanyl, which they had prescribed for pain. Personally, I wasn’t sure what good pain medicine did for an unresponsive person, but I assumed that they knew what they were doing. Dr. White mentioned that the hematologist had said that Dad’s elevated ammonia count might be affecting his mentation. Dr. White didn’t think that the slight elevation was enough to be the cause of his mentation problem and lack of responsiveness, but he said that would prescribe something to remove ammonia from Dad’s system. He also told us that the radiologist had compared Dad’s latest CT scans with his two previous scans, and the radiologist didn’t detect any change in his brain or other organs. He didn’t sound like this news was a big deal, but for the two people who craved any glimmers of hope, it was.

questionmarksThe big surprise of the week occurred right after Dr. White left Dad’s room. During the procession of residents and the attending physician, a woman kept appearing in the doorway, and would then leave. When the room was finally empty of providers, she entered Dad’s room and introduced herself as Aimee from the Patient Relations department. She told us that a hospital employee had contacted her office about Dad, and suggested that she meet with us about the events that led to his return to Memorial. I pulled out my iPad of notes and shared our concerns about some of our interactions with one of the CCH doctors. Aimee told us that they would investigate our complaint and get back to us in 30 days. I assured her that although we had complaints about one person, for the most part, we were pleased with the level of care that Dad had received from his providers. When she left, Mom and I were stunned and kept trying to guess who contacted Aimee’s office.

Mom and I left the hospital at 11:30 A.M. for lunch, ran some errands, and returned to Dad’s room at 2:00 P.M. We had hoped that while we were gone that Dad would have had his MRI, but he had not left the room.

Throughout the day, Andrea adjusted his Levophed dosage in an attempt to wean him off this last vasopressor. She said that while we were gone he opened his eyes again, but he was still not responsive. To me, it seemed as if he was sleeping with his eyes open.

At 2:15 P.M., the hematology team arrived. They said that they believed that Dad’s platelet levels were stable, even though they were still very low. They would continue to watch him, but they predicted that his bone marrow would begin producing platelets in about 15 days. I don’t know if these people understood the impact of their words, but I found it pretty promising that they were thinking in terms of the future for Dad.

Mom and I left the hospital at 4:30 P.M. and returned at 6:30 P.M. I noticed that Dad’s dosage of Levophed had been reduced again, which was great. We met his nurse, Dustin. Andrea had told me that he was great and that we would love him. When we met him, he didn’t really seem engaged, and informed us that he was also assigned to a new patient. Nurses generally spend the bulk of their time with new patients, so I was a little concerned about the level of care that Dad would receive overnight. During the couple of minutes that we spent with Dustin before he went to see his other patient, he told us that Dad did not have the MRI today but would probably go to radiology the first thing tomorrow morning.

While we were waiting for Dustin to return, Dad started moving his head and shoulders and repeatedly opened and closed his eyes. His eyes seemed to focus on me, and he grabbed my hands a couple of times. He seemed to be coughing and we couldn’t tell if he was having difficulty breathing. Mom got a nurse, who suctioned his trach, but she didn’t remove much in the way of secretions. It was so difficult to know what was happening to him. He couldn’t make any sounds, so we weren’t certain that he was coughing.

Crystal, the respiratory therapist, returned at 7:45 P.M. to administer oral care and ventilator maintenance. While she was suctioning Dad, he started desaturating, and his oxygen levels dropped well below 90%. She increased his oxygen level on the ventilator to 100% during oral care and then reduced it to 60% before she left. His oxygen saturation levels remained above 90% while we were there. His pulse had also been pretty high. It kept moving from a low of 98 to a high in the lower 120s, and once reached 133. What made these wild swings in his vitals so unnerving was that they constantly triggered the alarms on his monitors.

Before we left at 8:45 P.M., we spoke with the resident about Dad’s sudden movements. We had not seen Dustin since 7:00 P.M. For the first time since Dad was readmitted, we went home feeling a little less than comfortable about the level of care that he would receive during the night.

Why can’t doctors speak English?

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July 29, 2015. Dr. Hildago, the neurology resident, was in Dad’s room when we arrived at 7:45 A.M. She told us that his ammonia levels were back to a normal level and that his eyes would now follow her hand, which was an improvement over yesterday. We were still anxiously waiting for the radiology department to schedule him for the MRI. Dialysis had already started, but it could be interrupted for the MRI.

ackHis pulse was running in the 130s again, and his oxygen saturation levels were low. To compensate for the low oxygen levels, the respiratory therapist increased his oxygen levels on the ventilator to 60%. A few minutes later, the ventilator started alarming, which prompted the nurse to page the respiratory therapist. Evidently, one piece of the ventilator was cross-threaded, which was what caused the system to alarm. The alarms were starting to drive us crazy and I could swear that I could hear them when we were away from the hospital.

Dad’s heart rate was like a roller coaster all morning. A resident stopped by and said that we might be able to stop the wild fluctuations if we gave Dad some Fentanyl, the pain killer. If that was true, then perhaps I now understood why they would give an unresponsive person pain killer.

A technician stopped by at 8:55 A.M. to administer an EKG. Dr. Burkholter and his neurology team stopped by 45 minutes later. He did observe that Dad was a bit more responsive than he was Monday, but his responses were not robust. He wouldn’t know more until they could see the MRI.

wordsWhen Dr. White and his band of providers arrived outside of Dad’s room, I heard comments about Dad being tachycardic and encephalopathic. It took several Google searches before I came close to the correct spelling of either term. When he finally entered the room, the doctor said that Dad was on the right antibiotic, although his WBC count kept increasing. He added that they would probably perform a bronchoscopy on Dad later today to ensure that everything was OK with his lungs. He commented that it was good that Dad seemed to be waking up, but he said that he suspected that Dad’s tachycardia was related to his change in mentation. I had watched a lot of medical dramas in my day, but I still wished that he’d talk about Dad’s rapid heart rate instead of tachycardia.

When Svenja, the Trach Goddess of Scott & White, had last visited my father, she said that if Dad improved, she would switch out his tracheostomy. She returned today to switch out the current trach tube for a softer one that would be more comfortable for Dad. Svenja was another comforting provider, and I was glad to see her again.

At 11:00 A.M., I went to the hospital cafeteria for coffee. While I was gone, Mom said that Dad opened his eyes full wide and looked around the room. By the time that I returned to the room, he appeared to be sleeping again.

We had several visitors during the afternoon. Sandra, one of the Lay leaders from the church, stopped by for a short visit and said a prayer. A little later, Kelli, the charge nurse from the north tower ICU, stopped by for a short visit. She was leaving for vacation and wanted to check in on Dad before she left. The providers in the south tower were great, but sometimes I really missed the nurses in the north tower, especially Kelli. Not long after Kelli left, Addison, a speech therapist, also stopped by to visit for a few minutes. I liked visiting with Addison and Holly, the two speech therapists. When they entered the room, it felt like they brought in sunshine with them. My mother felt the same way about Adan, the speech therapist at the CCH. Perhaps there’s something special about people who become speech therapists.

IMG_0806Shortly before 4:00 P.M., I was presented with a bronchoscopy consent form, which was quickly followed by the arrival of the mobile bronchoscopy unit. Shortly before 4:30 P.M., they started the procedure, which had become almost routine to me. I wondered how routine it had become for Dad. I hoped that he had been oblivious to all of them.

While Mom and I were waiting for Dad’s procedure to end, Wynn Moore stopped by to say hello and tell us that she was leaving town for a few days. It seemed like everyone was going someplace. There was such a dichotomy between life inside and outside the hospital.

As we were leaving for dinner, Charris, a resident who had been assigned to Dad since his readmittance, told me that she was off for the next couple of days but would be back on the night shift for the weekend. I was disappointed that I wouldn’t see her for a few days. As it turned out, I never saw her again, which was a shame.

We returned from dinner at 6:45 P.M. and met Dad’s night nurse, Cinnamon. The day shift personnel wouldn’t be leaving for about 20 minutes and Mom and I wanted to say good-bye to Kelli, although I hoped to still be here when she returned in five days.

When we returned to Dad’s room, he was receiving only a tiny dose of Levophed, his remaining vasopressor. Cinnamon thought that she’d be able to reduce that amount somewhat or entirely by the end of her shift at 7:00 A.M. Unfortunately, his oxygenation was still poor and he was receiving 65% oxygen from his ventilator.

Cinnamon seemed very attentive to Dad. Mom and I felt better than last night with him in her care than we had with Dustin the previous night.

 

We held on to positive moments

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July 27, 2015. I was working from my parents’ home, and I would log on to my office network at 3:45 A.M. I had coworkers in India and Israel, and by starting at this time, I could work with them for two or three hours before I went to the hospital.

Shortly after 4:30 A.M., it occurred to me that my Millennial cousin might be more of a texter than an emailer. To ensure that he would read my email that I sent him last night, I texted him to tell him that I had emailed him the previous night. Sure enough, about an hour later he called me on my mobile phone.  He wasn’t able to give me many answers, but he did provide me with information that I could research further so that I could converse with the doctors and ask reasonably intelligent questions.

Mom and I arrived at the hospital at 8:00 A.M., only to learn that Dad was still unresponsive. According to Kristina, his nurse, he would open his eyes and grimace only to a sternal rub and other painful stimuli. The sternal rub can be painful for anyone, but Dad had just had open-heart surgery a couple of months earlier, and I couldn’t bear to watch this exercise. He would not respond to or follow any verbal commands. I later watched the doctor inflict this pain, and it was hard to watch. Worse yet was the slow-motion response from my father. It’s an image that I can’t shake.

sunflowervaseCarlos, the dialysis nurse, arrived at 8:15 A.M. and proceeded to prepare Dad for dialysis. At the same time, Dr. Fernandez, one of the fellows who worked in the ICU, performed a brief assessment of Dad’s condition. Following his assessment, he sat down with me and Mom and told us how pleased he was to see our devotion and attention to Dad, and added that he wished that all his patients had families like us. As he left us, he said that he thought that our prayers would be answered. It was a moment that would carry us for a few days.

Shortly after his dialysis session started, I put the radio headphones on Dad’s head. I left the headphones on him for about 30 minutes, but we still didn’t see any response.

Because Dad’s blood pressure and temperature dropped during dialysis, Dad’s nurse had to increase his vasopressor. It was discouraging to see the dosage increased, but it was still lower than it had been yesterday.

From the moment that we would arrive at the hospital, I would scan the halls to try to determine where the doctor was on his rounds and when he would arrive to Dad’s room. After he and his party arrived, I’d stand in the threshold so that I could eavesdrop on their conversation, which was usually more enlightening than his meeting with us. It’s also where I picked up some medical jargon. Today Dr. White and his entourage appeared outside Dad’s door at 10:20 A.M. As usual, he held court with his team of residents, fellows, pharmacists, and the nurse for several minutes before entering the room. He eventually agreed that things seemed to be progressing in the right direction—except Dad’s noggin. He also said that because Dad’s platelets were low again, he would request a hematology consultation. On a very positive note, the lowering of the vasopressors had improved the blood flow in Dad’s extremities, and Dad would not lose any toes!

When Mom and I returned from lunch at 1:00 P.M., we found Dr. Hildago, a neurology resident, in Dad’s room. Between the two of us, Kristina and I updated the doctor on Dad’s 83-day medical history.

After the neurology resident left, we were pleasantly surprised to see Pastor Don and his wife, Wynn, enter the room.  Seeing the two of them had sort of a cleansing effect on our stressed-out emotions. Mom and I always enjoyed their visits and hated to see either one of them leave.

Dad’s tube feed had resumed yesterday, and the dietitian stopped by to assess his nutritional requirements and status. The current flow of Nepro was less than half of what it had been when he aspirated. The dietitian recommended that it be increased to 40 ml/hr, which would provide him with about 1,700 calories day.

sunflowervase2At 2:15 P.M., the hematology team arrived. Because Dad’s lab work showed that he had Thrombocytopenia, Dr. White had requested a hematology consultation. According to the doctor, Dad’s platelets dropped when he became septic and required vasopressor support. From what the doctor said, Dad’s sepsis condition also increased his platelet consumption. To make matters worse, Dad’s infection and the antibiotics both suppressed the bone marrow production of platelets. For these reasons, the hematologists were not surprised that Dad’s platelet count continued to be low. They said that they would give him platelet transfusions whenever his platelet count dropped below 20. Following the platelet transfusion the other day, his platelet count now sat at 26, which was still pretty low.

Moments after the hematology team left, Dr. Burkholder, the neurologist, arrived with a couple of residents in tow. He told us that Dad should have an EEG sometime later today and an MRI either tomorrow or the next day, depending on various schedules. This brief encounter with the doctor was typical of how we interacted with the specialists. The resident or fellow would arrive and spend quite a bit of time assessing Dad, and then the doctor would pop in for two minutes, basically repeating what the resident had told us earlier.

eegDad’s oxygen levels had been fair, and when Nikita, the respiratory therapist arrived, she increased his oxygen level on the ventilator from 40% to 50%. As she adjusted the ventilator settings, she said that she’d probably decrease the levels back to 40% later in the day.

Kristina had shown me how to exercise Dad’s arms. When she saw me moving his arms, she showed me how I could also move his legs. I had barely started exercising his legs when the EEG tech arrived.

After the EEG, which takes longer to set up than to administer, Mom and I left the hospital to run some errands and eat dinner.

sunflowervase2When we returned to Dad’s room at 7:00 P.M., we were thrilled to see that Tyler was Dad’s night nurse again. Nights were scary for me and Mom, and knowing that Dad was in good hands gave us some peace of mind. Dad’s vasopressor dosage had inched down again, which was also wonderful to see.  Unfortunately, the oxygen setting on the ventilator was still set to 50%, which meant that Dad’s oxygenation was still shaky.

While Tyler was getting set up for the night, I exercised Dad’s arms and noticed that he seemed a little flushed. Usually the hospital room felt cold enough to set Jell-O, but for a change, Mom and I weren’t shivering. When I checked the thermostat, I noticed that it was set for 75 degrees—a setting that we hadn’t seen before and would never see again. Tyler quickly adjusted it back to 68 degrees.

When Mom and I left for the night, Tyler was oiling Dad’s dry feet and said that he planned to wash Dad’s hair. If only Tyler could work every night.

 

 

Some clinical improvements, but still unresponsive

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sinus-rhythm-stripJuly 26, 2015. Mom and I arrived at the hospital shortly after 8:00 A.M.; I looked at Dad, and then over to his IVs. Amazingly, Dad’s night nurse, Tyler, had been able to wean Dad down to one vasopressor. Dad’s day nurse, Kristina, also noted that he was down to one antibiotic. Unfortunately, his WBC count had ticked up to 21.2.  Dr. Pan, the nephrology resident, stopped by a few minutes after we arrived. He had reviewed Dad’s early morning lab results and recommended that they dialyze Dad again to remove more fluid, although they probably wouldn’t clean his blood.

Some of Dad’s other lab results looked a bit more promising. Although his poor liver was still in shock, his highly-elevated liver function had inched down slightly. The sparks of good news were tempered by Dad’s continued unresponsiveness.

eeg_waveWhen Dr. White arrived, he acknowledged that while there had been some clinical improvement in my dad’s condition, Dad was still critically ill and his mental status was not improving. To ensure that Dad hadn’t suffered a stroke or a bleed, he planned to order a CT scan. Dr. White restated his concern about Dad’s toes and thought that he probably would lose at least one toe.

A few minutes after Dr. White and his residents left the room, Rob, a PA who had worked with Dad back in May, stopped by. He said that he had seen us in the waiting room the other day and thought that we looked familiar. After he realized who we were, he wanted to stop by and see how Dad was doing. We didn’t have great news, but so far, Dad had survived four days longer than the original prognosis.

Stan was in Temple for the weekend, and he arrived at the hospital at 10:15 A.M. to stay with Dad while Mom and I attended church. At the church, our friends were anxious to hear about Dad’s condition. One friend is a nurse practioner with the dialysis center and receives a daily schedule of dialysis patients in the Scott & White system. She was shocked when she saw Dad’s name on the Memorial list. My father wasn’t a patient of hers, so she couldn’t access the details about his transfer, but she knew that the transfer from the CCH to Memorial wasn’t good.

According to Stan, Dr. Issac, the nephrologist, stopped by right after we left for church and said that they would not dialyze Dad today. Dr. White wanted to further reduce Dad’s vasopressor therapy. The process of removing blood during dialysis lowers a patient’s blood pressure, which would have been counterproductive to the daily goal.

The tube feed, which had been stopped on July 22, was resumed today. The thought of the tube feed scared me, but Dad needed the nutrition, and this was the only way for him to get it. The rate was restarted at 20 ml/hour, which was considerably less than it had been when he aspirated on his tube feed four days earlier.

Stan said that Dad was transported to radiology at 11:40 A.M. for his CT scan. He was returned to his room shortly before Mom and I returned from church.

musical-notesWhile Mom, Stan, and I were at home for lunch, I decided I would try some music therapy with Dad.  KNCT, a local public radio station in central Texas, plays big band music on Sundays. Armed with a small radio and headphones, I hoped that having Dad listen to his favorite genre of music might spark some response from him. We returned to the hospital at 2:30 P.M., and I placed the headphones on Dad’s ears and turned on the radio. Maybe I’d seen too many movies, but I was disappointed when we didn’t detect any response from him. We also tried yelling at him, tickling him, and shaking his arms, but we still got no response.

Charris, his assigned resident, stopped by to talk with us about Dad’s apparent stupor. She showed us the CT scan results and the radiologist’s assessment. Everything seemed to be normal from a brain trauma point of view. She agreed that he was just about in a coma. She suggested that they request a consultation with a neurologist.

Around 5:00 P.M., a nurse entered the room and introduced herself as Melissa, Dad’s new nurse. Because the MICU had too many nurses for the number of patients, they had to send one home, so Melissa would be with Dad for the next two hours. Mom and I left around 5:15 P.M. to visit the next-door neighbors and share some of the bounty from my parents’ garden.

When Mom and I returned to the hospital at 7:00 P.M., Tyler was his nurse again and the other Tyler was the respiratory therapist. I probably shouldn’t have, but when Tyler said that he was doing something barbaric to see if Dad would withdraw from pain, I asked Tyler to stop hurting him.

Nurse Tyler’s goal was to further reduce Dad’s vasopressors overnight.  Tyler performed a pretty thorough assessment of Dad tonight while we were there, and then showed me how to use the music on Dad’s super expensive bed. I set up nature sounds, which later confused a nurse’s aide who stopped by to take Dad’s blood sugar. She thought that there were crickets in the room, which really isn’t too unusual for central Texas.

Mom gave Dad a goodnight kiss, and it looked like he kissed her too. We left the hospital for home around 8:30 P.M.

Before I went to bed, I emailed my cousin, David, who is a cardiovascular diseases fellow at Brigham and Women’s Hospital in Boston. I updated him about Dad’s condition and then asked about his thoughts pertaining to my father’s mentation. My question was way outside of his specialty, but I was hoping that he might be able to help me understand my father’s catatonic state.

Taking it one hour at a time

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sunflowers1July 24, 2015. The call that we dreaded from the hospital during the night hadn’t come. We didn’t know what to expect today, but we had to take it one hour at a time.

 
When Mom and I arrived at the hospital, we found that Dad was back on dialysis, for the fourth time this week. According to Andrea, his nurse, Dad was less responsive this morning, which was not what we wanted to hear. She added that, according to his morning lab work, he was still suffering from metabolic acidosis. She had been able to wean him off of one of the vasopressors, but his blood pressure dropped below 65 MAP during dialysis, and they had to restart the vasopressor. When I asked her about his WBC count, she told me that it was up to 18.9, a 300% increase in less than 48 hours.
 
petals1Dr. White started his rotation today as the attending physician. We now had what seemed like a long relationship with this doctor, and he didn’t pull any punches with us. He told us that because of all the vasopressors that Dad was taking for his low blood pressure, his toes were being affected and he might lose a couple of them. The doctor strongly suspected that Dad’s circulation problems would begin to move up his extremities. Dad’s liver was also in shock, and the good doctor said that he was surprised that Dad had been able to withstand the dialysis. He also stated that Dad’s pupils were nonresponsive and he did not withdraw from pain, even when taken off sedation. He reiterated Dr. Sanchez’s prognosis from yesterday in that he did not expect Dad to survive this episode. At the end of this uplifting visit, Mom and I felt that we might need to make a decision tomorrow or Sunday.
 
Pastor Don stopped by around 1:45 P.M., and Mom and I had a very emotional visit with him. I just couldn’t believe that this was happening, and Don said that it was OK for me to be mad at God. I was mad, frustrated, and heartsick, but I don’t think that I reached the point of being mad at God. Among other things, Don asked us if we had considered hospice. I wasn’t sure whether hospice care was available at the hospital or some other location. At that point, I hadn’t considered anything, and I wasn’t ready to think about it. 
 
Shortly after Don left us, I walked over to the north tower to visit with some of the CTICU nurses. I found a couple of our favorite nurses and provided them with a brief update on Dad’s status. When I returned to Dad’s room, I learned that Andrea had been able to wean Dad off of two of the five vasopressors, and his blood pressure seemed to be stable. This was the first good news since Dad’s return to Memorial, and I could feel myself exhale. I said a silent prayer that we could wean Dad off the remaining vasopressors before he lost any extremities.
 
Later in the day, Pastor Don stopped by again with his wife, Wynn. Mom had met her two nights earlier, but this was the first time that I had met her. I found her to be delightful and I was pleased to learn that she worked in the chaplain’s office at the hospital.
 
Vasopressors increase blood pressure by constricting the blood vessels. This constricting of blood vessels is particularly acute in the extremities and in situations like Dad’s, toes and fingers sacrifice blood flow for the benefit of the vital organs. Andrea tried to find Dad’s pulse in his feet with her hands, but couldn’t. She eventually was able to find a pulse in both feet with a Doppler ultrasound. The relief among those of us in the room was palpable when we heard the sound of blood flow.
 
petals2Mom and I went home for dinner and returned to the hospital at 7:15 P.M. Charlie, the respiratory therapist, had just finished Dad’s trach and oral care and ventilator maintenance. Dad was still on three vasopressors. Mom and I met Donna, the night nurse, before leaving for the night. She told us that Dad had additional blood draw after dialysis and that his WBC count was now 22.7, up another 4 points from this morning. His WBC count hadn’t increased at this rate since his first aspiration episode in May.
 
I should have been encouraged that Dad had survived another day, but I was concerned about Dad’s worsening responsiveness. I couldn’t stand the thought of losing him without being able to communicate with him one last time. I had mentioned to Andrea that I wanted to talk with a respiratory therapist to see if there was a way in which we could communicate with him.
 
July 25, 2015. Mom and I arrived at Dad’s room at 7:15 A.M. We were pleased to see Andrea again, but nurses work only three days each week, so we knew this was our last day with her. Dad’s WBC count was now 19.2, down slightly from yesterday afternoon, his hemoglobin was down, and his acidosis condition had improved to the point that he was now slightly alkaline. Dad had been receiving a bicarbonate drip, which they now decided to stop. The vasopressors were still affecting the blood flow in Dad’s feet. We held our breath again as we watched Andrea struggle to find a pulse with the Doppler ultrasound.
 
Dad was sleeping a lot, and Andrea said that he was not responding to commands, but he opened his eyes for her. He opened his eyes for me, too, but I couldn’t get him to squeeze my hand.
 
Charris, one of the residents assigned to Dad, told us that when Dad arrived a couple of days ago, they performed a mini bronchoscopy on him to take some cultures from his lungs. They now knew that in addition to the aspiration pneumonia, he also had an infection (pseudomonas) in his lungs. Severe cases of pseudomonas generally occur in people who are already hospitalized with another illness or condition, or people who have a weak immune system. It seemed that everything that ailed Dad now was hospital acquired.
 
Dr. Pan, the nephrology resident, stopped by and told us that because Dad was not very acidosic and didn’t seem to have much extra fluid, they would not dialyze him today. He said that the nephrology team would assess Dad on a daily basis to determine whether to dialyze.
 
Dr. White stopped by during rounds at 8:00 A.M. He agreed that we’d seen a slight improvement in Dad since yesterday–probably due to the dialysis. He was able to feel the pulse in Dad’s feet with his hand, and he said that Dad’s feet looked better than they did yesterday. I knew that I shouldn’t have been so concerned about his toes when his life was at stake, but I was relieved that the pulse in Dad’s feet was getting stronger as they weaned him off of the vasopressors.
 
petals3Now that Dad was back on the ventilator, he couldn’t talk. I got some wild idea yesterday that I had to give Dad a chance to communicate with us if he was going to die. Andrea said that she would contact the respiratory therapist to see if it would be possible to enable him to talk. The respiratory therapist contacted Svenja, the Trach Goddess of Scott & White. We hadn’t seen her since June, when she first changed Dad’s trach. When she heard about Dad’s condition and our desire to communicate with him, she agreed to give it a try. Unfortunately, all of her efforts failed to work, and we probably sapped some of Dad’s strength. The exercise woke him up for a couple of minutes, but he fell asleep almost immediately when Svenja reinflated his trach collar.
 
When Mom and I returned from a lunch break, we found that Dad was still asleep and impossible to rouse. Most of his vitals were still good, but Andrea told us that his platelet count had dropped, and he needed a platelet transfusion. We sat in the room with Dad for a few more hours and finally went home for dinner. It was difficult to stay in the room with him in his current condition, but it felt worse to leave him. Although his vitals were stable, his condition was still grave, and the failed attempt to communicate with him had wilted my already sagging spirits.
 
We returned to the hospital at 7:00 P.M., in time to meet Tyler, the night nurse. Mom and I liked him immediately, and he seemed intent on weaning Dad off of the vasopressors. While talking with the nurse, the respiratory therapist, also named Tyler, attended to Dad’s trach, the ventilator, and Dad’s oral care.
 
Before we left for the night, Tyler put some lotion and booties on Dad’s feet to help with his peeling and cold feet. Tyler told us that he would be working for four nights that week, and we really hoped that he would be assigned to Dad. When Mom and I left for home at 8:30 P.M., we felt a small sense of optimism that Dad would have a good night, and maybe we would too.
 

Slipping back into Hell

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July 23, 2015. Dr. Anderson called me at 5:30 A.M. and told me that they still were unable to raise Dad’s blood pressure. His EKG had changed and the doctor suspected that Dad had suffered a heart attack. The doctor wanted to know how aggressive we wanted to be in his treatment. They were limited with what they could do at the CCH, and if they kept doing what they were doing, Dad would die in one to two hours. They might be able to help him at the main hospital (Memorial), but with his age and current situation, Dr. Anderson recommended that we think about how much more we should so. I woke Mom to confer with her, and she wanted to do everything possible. I called Dr. Anderson back with our decision, and he said that Dad would be at Memorial in about an hour. Considering that he projected one to two hours for my father to live, the hour-long trip to the other hospital made me a little nervous.

hell2When I got off the telephone with Dr. Anderson, I texted Pastor Don and my husband about Dad’s situation. Mom and I got dressed and headed to Memorial. We didn’t know where to go, so we headed to what we knew: the Cardiothoracic Intensive Care Unit (CTICU) nurses station in the north tower of the hospital. We arrived at 5:50 A.M., and it occurred to me that we arrived at the same time on May 6 for Dad’s original surgery. We asked the CTICU nurses about Dad’s whereabouts, but either he had not arrived, or he was not yet in their system.

While at the CTICU nurses station, we saw a couple of nurses and respiratory therapists that we knew, and they showed us to the Medical ICU (MICU) waiting room in the south tower. While we were waiting, personnel from the day shift started arriving. As Kelli, one of the charge nurses from CTICU, walked through, she was startled to see us. We quickly apprised her of Dad’s condition, and she hurried off to see what she could learn about his whereabouts.

At 8:00 A.M., we were still sitting in the MICU waiting room, waiting to learn more about Dad’s condition and see him. We saw Jordan, a PA, and Dr. Sai, both of whom said that they would check on Dad and get back to us. When we were finally called to Dad’s room, we were met by Dr. Sanchez, who was the presiding physician that week. He said that Dad was stable, but his condition was grave and the doctor didn’t think that Dad would survive. He said that they would know more in 48 hours. I was so anxious for anything positive, the fact that he even mentioned a time beyond today seemed like good news.

hell2bEvidently, when Dad arrived from the CCH, he was on three vasopressors and his MAP was in the 40s, which is way below minimum. Now, he was receiving more than the maximum dosage of five vasopressors to keep his blood pressure at a MAP of 65, which is a minimum level. When asked by Dr. Sanchez about the extent to which we would go, we said that we wanted to do everything possible, stopping short of restarting his heart, should it stop.

Our first couple of hours in Dad’s room were like a tragic welcome-home event. Addison, one of Dad’s speech therapists, stopped by to say “hello.” Adan from the CCH had called her and told her about Dad’s episode. Dr. Velazco, another of the physicians who rotates through the ICU, stopped by. He still wore scrubs from surgery and was very upset about Dad. Occasionally, we were asked to leave Dad’s room, and during those times I kept encountering nurses and therapists from his earlier stay at Memorial. They were all shocked and generous with their supporting hugs.

After Dr. Sanchez and his entourage left, we got to know Tina and Andrea, the two nurses assigned to Dad. I really liked them and the way in which they cared for Dad. For all intents and purposes, the doctors had told us that Dad was a lost cause, but you wouldn’t know it from these two women. I also came to depend on Charis, a resident who was assigned to Dad. Lynette, the case manager, was also very attentive and told us to contact her if we needed anything. I suspect that she thought that Mom and I would need her assistance when Dad died.

hell2cThroughout Dad’s stay in the Scott & White system, I had developed a steely resolve to stay positive and to keep my parents positive. The last six hours had severely cracked my armor. When Charis first entered the room to talk with us about Dad and how the doctors were expecting his death, I sort of lost it. While fighting back tears, I started telling her that what I was feeling was like Orpheus watching Eurydice slipping back into Hell. The only light moment of the day came when my mother commented about the startled look on Charis’ face when I interjected Greek mythology into her briefing.

As the day progressed, Dad’s condition seemed to worsen. The doctors continued to administer broad-spectrum antibiotics. Only 24 hours earlier, his WBC count was 5.6. It was now approaching 13 and he was non-responsive to pain. In addition, he had developed septic shock, severe acidosis, and his liver was in shock. The doctors thought that putting him back on dialysis might help with the acidotic condition. Shortly before noon, Carlos, the dialysis nurse, arrived and started the eight-hour dialysis session. Dad’s blood pressure dropped, so they stopped removing fluid.

Around 12:30 P.M., Dad seemed to recognize me. I took that opportunity to tell him that I had purchased an indoor skydiving session for my husband for his birthday. He made a face, which seemed like the response that I would have expected from him. Around 1:00 P.M., Andrea was able to get him to squeeze her hand. She also touched some gauze to his eyes to see if he would react. Bases on his responses, Andrea thought that, neurologically, he was doing better. He had not reacted to any type of stimuli, including pain, when he was admitted.

hell2dWhen Mom and I went to lunch, we stopped by the CCH to pick up Dad’s belongings and flowers. Live flowers are not allowed in the ICU at Memorial. When we returned to Memorial around 2:30 P.M., he was wrapped in a Bair Hugger (heating blanket). His core temperature was now too low, partly because of the dialysis, and they needed to raise it.

During the remainder of the day, a variety of therapists and specialists stopped by to take blood and administer trach care and oral care.

As news of my father’s return spread through the ICU, more nurses stopped by his room. One unexpected visitor was Peggy, a hospital employee who monitored central (PICC) lines. She stopped by the room because she recognized us. We chatted a few minutes, and Mom and I quickly learned that she was not a fan of the CCH. She encouraged us to contact Patient Relations about the CCH and our experiences there.

Mom and I went back to the house for a late dinner break and didn’t return to the hospital until 8:00 P.M. We didn’t plan to stay long, but felt that we needed to meet his night nurse, Rebecca. Dad was off dialysis and his blood pressure was up, but it dropped sharply when Rebecca tried to start weaning him off of the vasopressors. She decided that she would probably keep the levels the same during the remainder of her shift, which would end at 7:00 A.M. When I asked her about the results of his ABG tests earlier that day, she said that his pH levels were still “out of whack,” which was disappointing news. We had hoped that the dialysis treatment would have improved his acidotic condition. Before Mom and I left for the night, we visited with Charlie, the respiratory therapist, while he administered trach care and an oral treatment. We stayed until about 8:30 P.M.

I don’t recall what we did when we returned home, but after the day that we had just endured, I suspect that a glass of wine was involved.

And the nightmare begins again

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skyWednesday, July 22, 2015: 3:45 P.M. I had just left a meeting at work and listened to the voicemail that my mother left 40 minutes earlier. “Melody, it’s Mom. I’m at the hospital with Dad and he’s not doing too well. He had a bad coughing spell during dialysis and they’re trying to bring his blood pressure down, but he’s got the shakes and delusions and all kinds of stuff. Call me on my cell, because I’m not going to leave him. Talk to you later. Bye-bye.”

A tingly feeling crept up my neck and face, and I hoped that she was overreacting.

Earlier that day, Dad was wheeled to the dialysis room on the second floor of the CCH. His WBC count had been holding steady at 5.6, but his creatinine level was still elevated. His stubborn creatinine levels prompted his nephrologist to predict that Dad was likely to remain dialysis dependent, news that we didn’t want to hear. During his morning rounds, Dr. Anderson found Dad to be awake and alert and said that his vitals were good.

At 10:30 A.M. Dad starting coughing hard during dialysis and couldn’t seem to stop. His condition seemed to worsen immediately. Dialysis was stopped and Dad was returned to his room. Dad’s oxygen saturation levels bounced between 75% and 90%. He was coughing and suctioning large amounts thin, clear looking secretions. Michelle, Dad’s nurse, said that he was alert and had a productive cough, but it was obvious to her that Dad was in distress. The respiratory therapist was summoned to Dad’s room. She removed the red cap from Dad’s trach tube and placed him on BIPAP with 40% oxygen—a big medical and psychological step backward.

Rachel, the nurse practitioner was called to Dad’s room to evaluate his condition, and she thought that his cough appeared to be calming down. Shortly thereafter, the nurse notified Dr. Anderson that Dad’s heart rate had elevated to 150. In addition, his clear-looking secretions changed and now appeared to be Nepro. His tube feed had been stopped in dialysis when he started coughing, so they were now certain that he had aspirated his tube feed during his coughing jag. Nepro in the lungs pretty much triggers pneumonia immediately. This would be the second time that he had had pneumonia in less than three months.

On dialysis days, Mom usually arrived at the CCH around 11:30 A.M., about 10 minutes before she anticipated Dad’s return to his room. When she arrived today, she was startled to see that not only was Dad already there, the room was also teaming with activity. Michelle briefly apprised Mom about what had happened, but Mom didn’t get the impression that Dad’s condition was dire. She watched the nurses administer some meds, prop up Dad in bed, and leave the room. From what Mom could tell, it didn’t seem like the meds or the upright position did anything to improve his situation.

A short time later, Dr. Anderson told Mom that they would move Dad to a larger room next to the nurses’ station so that they could more closely monitor and attend to him. After they moved him, Mom sat in his room, watching the constant flow of nurses while they injected one medicine after another into his IV. Several times she was asked to leave his room, although she didn’t always know why.

After sitting in Dad’s room for a couple of hours, Mom called her friend Marilyn. Being the good friend that she is, Marilyn dropped everything and went to the CCH to sit with my mother. Shortly after Marilyn arrived, my mother called me and left the ominous message on my voicemail. When I returned her call at 3:45 P.M., she was very concerned, and although they had just moved Dad from BIPAP to full ventilation, she was still not convinced that I should drive to Temple before the weekend.

Marilyn and Mom sat together in Dad’s room for a couple of hours. During that time, Dad’s condition had not improved and Mom became worried. To her, it seemed like they kept trying medications but to no avail. As Marilyn and my mother talked, Marilyn asked Mom if she should call Pastor Don, but Mom didn’t know how to contact him. Marilyn was pretty active in another United Methodist Church. She didn’t have Don’s contact information, but she knew someone who did.

Pastor Don’s mobile phone rang just as he and his wife, Wynn, started eating dinner at a local restaurant. Don promised to stop by the CCH as soon as they finished dinner. Mom called me again at 5:30 P.M., and said that she wanted me to come to Temple that night. Stan had come home for dinner and was about to return to his office for the night. His birthday was becoming memorable, but not for the reasons we wanted. I had already packed a bag in anticipation of Mom’s call, but decided to wait a couple of hours before leaving. Anyone familiar with U.S. 290 would understand why I didn’t want to brave that highway until after 7:00 P.M. I said good-bye to Stan, and he said that he’d come up to Temple in a couple of days.

Between Mom’s call to me and when I left Houston, Pastor Don and Wynn arrived at the CCH. Mom and Don spent some time together in the small chapel at the CCH, and Mom said that Don was wonderful and encouraging. Finally, at 9:30 P.M., Mom, Marilyn, Don, and Wynn left the CCH.

My drive west on U.S. 290 was a little surreal. The sunset was a spectacular display of stunning shades of orange. I was torn between appreciating the beauty of nature and praying that my father wouldn’t die on my husband’s birthday. I arrived at the CCH around 10:00 P.M., and made my way to Dad’s room. When I arrived, he was fully ventilated and surrounded by ice and fans in an attempt to bring down his temperature. I was met by his night nurse, Christine. She had arrived at 7:00 P.M., and was stunned by his sudden change. She told me that he had been doing pretty well, and she really enjoyed joking around with him during her shift. He had never spoken about her to me, but he’s a big kidder and it seemed like they had developed a friendly banter.

I went to his bedside and held his hand, but he didn’t know that I was there. Christine asked me under what circumstances I would want to be called during the night. I told her to consider her own father and the circumstances under which she would want to receive a call, and then I left. I had called my mother when I arrived at the CCH and she was waiting for me to arrive at the house. We were both exhausted, yet keyed up on nervous energy. We talked for a while before going to bed.

At 3:30 A.M., the phone rang and it was Michael, a nurse from the CCH. He mumbled something about how they were adjusting Dad’s medication. I listened for a moment, said “OK,” and then hung up. After the call, I wasn’t really sure why he had called. It was unsettling and confusing. I wished that I had been more alert. I learned later that he had called to tell me that my father’s condition had worsened and that Dad required additional medication and that they were going to insert an arterial line so that they could monitor his blood gases. He had probably told me that in some jargon that I couldn’t understand—especially at 3:30 A.M. Scarier still was that this phone call was to obtain consent for the procedure. About an hour later, Dad’s blood pressure dropped to 65/39, his respiration was 35, his extremities were cold, and he still had a slight fever. With full ventilation, his oxygen saturation was only 90%.

At 5:30 A.M., the phone rang again. This time it was Dr. Anderson. He told me that my father wasn’t doing well, and among a list of problems, he was pretty sure that Dad had had a heart attack during the night. He then said that they could keep on doing what they had been doing, and my father would probably die in 1-2 hours, or they could send him over to Memorial. Dr. Anderson went on to say that considering my father’s age and “extremely poor prognosis,” he assumed that we would not want to take “aggressive measures.”

God help me; I took a deep breath, and in that moment I flashed back to several conversations I had had with Dad in which he listed conditions in which he would not want to live or treatments that he would not want to endure. I told the doctor that I would call him back in a couple of minutes. I then woke my mother with the news from Dr. Anderson. I was relieved when she said, “We have to do whatever we can to help Daddy.” I immediately called the CCH and told Dr. Anderson to send my father to Memorial. He hesitated for a moment and said OK, but it sounded more like a question than an affirmation.

At 6:15 A.M., my father was moved to a stretcher and transported back to Scott & White Memorial to MICU. Following Dr. Anderson’s call, the clock seemed like our biggest enemy.