Frustration at every turn

sflowerAugust 5, 2015. When Mom and I arrived this morning, Dr. Brett Ambroson, the resident, was finishing up his morning assessment of Dad’s current status. We were pleased to learn that the vomiting episodes from the previous day had stopped. Dr. Ambroson also noted that Dad would now move his extremities when prompted by him or the other care providers. When I asked about Dad’s WBC count, the doctor said that it was down slightly from yesterday. I wasn’t thrilled with the very slight decrease, but at least the steady upward trend had been arrested. While speaking with Dr. Ambroson, Lucy and Cheryl, the dialysis nurse and her aide, prepared Dad for another eight-hour session.

When the providers left the room, I shut the door and told Dad about the events that started on July 22. Although I did all of the talking, it was a very uncomfortable and disturbing interaction. He seemed to be very mad and appeared to be silently shouting at me. He then ignored Mom for the remainder of the day. I never knew why he was so mad.

Svenja, the trach nurse, stopped by and told us that she would be switching out his trach tube for one that was longer and softer. She explained that the new tube might help to wean him off of the ventilator and help with the air leakage problems that he had been experiencing. After Svenja inserted the new trach tube, I had her deflate the cuff to see if Dad might be able to speak a few words. He really tried, but we couldn’t understand him. I had hoped that I might be able to get some sense of why he was so mad. Our inability to communicate with him this time was disappointing but did not leave us with the feeling of devastation that we experienced on July 25 when we thought that he might die without being able to say good-bye.

During dialysis, Dad’s heart rate rose to 143 and stayed there and his MAP reached 103. Dr. Yau ordered an EKG and then ordered metoprolol to reduce Dad’s heart rate. Lucy also reduced the amount of fluid that was being removed during dialysis. These two actions returned his heart rate to the 70s-90s. At the end of his dialysis session, Dad’s heart rate returned to the 60s.

Mom returned to the hospital after lunch, but I stayed at home to work.

Like most of his days now, the afternoon was a mixed bag. He was now breathing on his own, with BiPAP support. However, his increased awareness seemed to increase his propensity to pull on his various invasive devices. To prevent the accidental or intentional removal of his feeding tube, the nurse bridled it.

At the completion of his dialysis session, Lucy stopped by and redid his dialysis catheter dressing. Because the procedure required a sterile environment, Dad had to wear a mask. The procedure took about 20 minutes and made Mom nervous. Because Dad was breathing on his own, she was afraid that the mask would inhibit his ability to breathe. The mask was over his face and not his trach, so I don’t know how much the mask actually interfered.

I returned to Dad’s room at 6:45 P.M to find him bent over to his left side with his head hanging off the pillow and his heart leads disconnected from his chest. His monitor was alarming, with no nurse or aide in sight. I was a little miffed, especially since no one came even after I used the call button. I finally flagged down Dr. Stewart, who helped me get him resituated and his heart leads reattached. You just have to hope that nothing goes wrong with you or a loved one during the shift change because you’re totally on your own.

Sarah was back as Dad’s night nurse, and Maggie, who was his nurse the previous night, was the charge nurse. Despite my earlier concerns, I was relieved that Dad was under the care of these two women. Maggie told me that she would be helping with baths again tonight and that they planned to also give Dad a shave. My father disliked facial hair, especially on himself. During his stay in the hospital, he had started to appear pretty scruffy.

Dad was much easier to get along with tonight. After Sarah assessed him and got him situated in bed, he spent most of the evening holding my hand until I left at 8:00 P.M.

August 6. Mom and I arrived at the hospital at 6:45 A.M. Dad’s nurse, Sarah, said that he had had a good night. True to their word, the night nurses had bathed and shaved Dad, and he looked much better. Dr. Ambroson said that Dad’s numbers were trending in the right direction, but he didn’t share those numbers with me. I asked him if Dad could see the physical therapist today. Physical, occupational, and speech therapy always took a backseat to anything else. Dialysis had prevented Dad from receiving PT yesterday. When the good resident had left, I told Sara that I wanted to speak with Lynette, Dad’s case manager. Yesterday, Dr. Yau had made a vague passing comment about transferring Dad to the CCH, and I wanted to follow up with the case manager.

At 9:15 A.M. Dad started having something akin to a panic attack. He indicated that he had chest pain, and then his heart rate spiked to 144. He stayed panicky and tried to tell me something, but I couldn’t make out what he was trying to tell me. At 9:45 A.M. he was transported to the interventional radiology department, where they replaced his tunneled catheter with a PICC line. I accompanied him so that I could sign his consent form. During the trip through the labyrinth that is the back halls of the hospital, the battery in Dad’s bed seemed to lose its charge. As wonderful as this bed could be, it seemed practically glued to the floor when it had no power. The transportation attendant eventually got the bed moving again, and we finished our journey.

When I returned to Dad’s room, Michelle, the dietitian, asked me if the plan was to send Dad back to the CCH. Shortly thereafter, Dr. George and the nephrology fellow stopped by and asked if the plan was to send Dad back to the CCH. Her reference to CCH was the second time in 15 minutes and the third time in two days that hospital personnel had mentioned this terrible place to us. I hated the thought of sending him back there.

When Lynette, Dad’s case manager, arrived, we had a tense and somewhat unpleasant conversation with her about Dad’s return to the CCH. When I told her that we didn’t like the care that he had received there, she said that we had alternatives. We could send him to a continuing care facility in Georgetown, some 50 miles south of Temple. When I told her that Georgetown wasn’t a viable option, she started some song-and-dance that S&W gave us options, and it was a valid option. Aside from the fact that we’d be unable to make multiple trips to the hospital during the day, I didn’t want my mother driving on the dangerous stretch of interstate highway that was in a perpetual state of construction. I would have preferred that Dad be transferred to the fourth floor at Memorial, but he was still too ill to move there, and they would not accept patients who received any sort of breathing support.

Dad returned to his room from interventional radiology at 11:00 A.M. The physical therapists stopped by at 11:30 A.M., but Dad refused to participate, and there was nothing that I could say to him that would change his mind. After that frustrating interaction, Mom and I left the hospital and went home for lunch. Before we left, I asked the therapist for suggestions of exercises that we could do with Dad between sessions to help build up his strength.

Mom returned to the hospital after lunch to find Dad sleeping, and he slept for most of the day but woke up shortly before Mom came home for dinner.

nodealI returned to the hospital at 6:30 P.M., armed with a couple of small bottles of water. The physical therapist had told me that lifting the bottles while in bed would be good exercise for Dad. Unfortunately, he wouldn’t touch the bottles. I tried talking with him and shared some of his improved lab results with him, but nothing helped. I even tried to make a deal with him and told him that if he would exercise even a little, I would eat peas, which I detest. I still haven’t had any reason to eat peas.

 

Slipping back into Hell

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.

The procedure went well

On May 6, 2015, we arrived at the hospital before 6:00 A.M. and found our way to Day Surgery. Another patient—a woman who appeared to be in her 70s—was also being admitted for the same procedure. The surgery preparation was typical and my father was wheeled away to the OR around 7:30 A.M. My mother and I waited in the frigid Day Surgery Waiting Room for about six hours, the expected duration for this procedure. We kept in touch with family and friends via social media and email, and we kept tabs on my father’s progress by watching the status bars on the large screen in the waiting room. My family and friends are spread across the country like buckshot from a sawed-off shotgun. Until this surgery, I underestimated the importance that Facebook would have on our ability to communicate with loved ones.

statusVideo

We anxiously waited for the periodic calls from the OR, telling us that the surgery was progressing well and that my father was doing fine. We were relieved when the surgeon, Dr. Sai, finally met us and told us that the procedure went well but that the next 24 hours were critical for strokes and blood clots. We went to my father’s room and were thankful that he was able to respond to simple commands from the nurse. His nurse, Ursula, was an interesting personality. She hailed from Transylvania and didn’t want to grow old. At the time I wasn’t thrilled to hear about how she didn’t want to become like the people in her care, but I grew to really like her and chalked up her comments to cultural differences.

Early the next morning I stopped by the hospital to check on him and say hello, and then drove back home to Houston, believing that all was well. Later that day, my mother called to tell me that my father was very disoriented; among other things, he saw bugs everywhere. Evidently, the woman we had met prior to his surgery was in the room next to his and she also experienced a couple of days of delirium after surgery. It was a small comfort to know that another patient was also struggling with delirium, although a heads-up about post-anesthesia delirium would have been nice. The passage of a couple of days and a couple doses of Haldol, and he was back to his normal self.

Mother’s Day was May 10 and my husband and I spent the weekend in Temple visiting with my parents. My father was still in the ICU but was moved to “the floor” soon after my husband and I went home. My mother called me on Monday to tell me that while she was away from the hospital for lunch, my father fell when he got out of bed to fetch the urinal. The nurse had neglected to return it to his bedside after repositioning him. We were concerned that the fall would extend his 7 to 10-day stay by a couple of days. Although I was annoyed with him for getting out of bed, I now wish that I had a dollar for every time a nurse or other professional left objects out of his reach–including call  buttons. Although my mother and I admonished him for doing it, we’d have probably gotten out of bed, too.

On May 13, my mother told me that he’d been walking the halls with a front-wheeled walker and that therapists were stopping by each day. He seemed to be improving, and she and my father thought that he’d be discharged by now. As my father’s discharge date seemed to approach, the physical therapists, PAs and other hospital personnel recommended outpatient physical therapy, a notion that my parents quickly rejected. Based on these conversations, his length of stay in the hospital, and comments from the doctors and hospital staff, my parents surmised that my father’s discharge was imminent.

On Friday, May 15, my mother was under a lot of self-imposed pressure to prepare the house for my father’s homecoming. She had no idea that in a matter of hours two separate events would occur that would rock their world (and mine).