nephrology – Page 5 – Tale of Two Parents

Waxing and waning cognition

Published on January 31, 2017 by mellowdee55Leave a comment

August 25, 2015. Dad had a good night, and by “good,” I mean that he stayed in bed and didn’t try to pull out any vital devices. Dr. White thought that Dad was pleasant and could answer most of his assessment questions, but Dad’s cognition waxed and waned, depending on the time of day. The doctor said that until Dad regained some of his strength, he wasn’t going to consider red-capping the trach, let alone removing it.

The healthcare providers weren’t the only ones who thought that Dad was confused about his whereabouts. Dad thought that he was at home and Mom had to explain to him that he was at the hospital and home was where she went at the end of every day.

Another of Dad’s problems was severe protein calorie malnutrition. I felt partly to blame because I had practically insisted that they reduce his tube feeds during dialysis. I couldn’t help how I felt. There was no way that Dad could survive another aspiration event.

OLYMPUS DIGITAL CAMERA Mom had been encouraged yesterday when Dad seemed interested in signing the paperwork necessary to obtain matching funds from Shell for the Locke Academic Scholarship at CMU. Unfortunately, although he was still very interested in the scholarship, he couldn’t sign his name. Mom gave him a pen, but he didn’t seem interested in practicing, either. She thought that perhaps she could sign the form for him if they could get a notary to witness his intent and consent. Mom told the CCH chaplain of their predicament and he said that a notary public worked at the CCH. He said that he would see what he could do for them.

When she was notified about Mom’s request, Marty, from the administration office, stopped by Dad’s room and told Mom that because of Dad’s mentation problems and confusion, the CCH’s notary could not witness any signatures on his behalf. She went on to say that because finances were involved, the notary at the CCH could not notarize the patient’s document. Sometimes Marty annoyed the heck out of me. Instead of simply stating that the CCH was not permitted to notarize financial documents, she made a point of stating that Dad was not of sound mind. The bottom line was that he could have been as sharp as a tack, and they wouldn’t have been able to help my parents. I could not understand why so often the staff at this facility felt the need to go above and beyond to demoralize patients and their families.

At 1:30 P.M., Jennifer, the physical therapy assistant, stopped by for Dad’s therapy. Dad told her that other than a pain in his right shoulder, he was feeling pretty good today. He also kept mentioning to her that he had a document that he needed to get notarized. Jennifer had her work cut out for her to keep Dad focused on his exercises, but she was able to get him to finish some bed exercises and to sit on the edge of the bed. She had to use her hand to keep Dad from falling over on the bed. She wasn’t able to get him to stand up, but after he finished his physical therapy session, Jennifer and Carrie, the nurse, put Dad in a cardiac chair that they referred to as the Stryker chair. This chair was totally cool and much different from the cardiac chairs at Memorial. It had four wheels that turned independently of each other. When you pushed him in this chair, you had the flexibility of moving sideways and in circles. Unfortunately, you could also move in those directions when you were trying to move in a straight line. Today he simply sat in the chair in his room.

A couple of hours after Mom went home, and at the time of the shift change, the bed alarm sounded in Dad’s room. The night nurse, Debra, hurried into Dad’s room and found him on the floor. Evidently, he had decided that he could get out of the bed to use the bathroom. As soon as he stood up, he pretty much sat down on the floor. With the assistance of another nurse, Debra got him back into bed and reset the bed alarm to its most sensitive setting.

Less than three hours later Dad’s bed alarm sounded again. This time, Debra reached Dad’s room before he got out of bed. She reminded him again that he needed to use the call button when he needed assistance. Before leaving the room, she raised three of the side rails on his bed. Because Dad often scooted down the bed and sort of slid out of the bed through the open rail, I asked if it could also be raised. I was informed by the nurses that raising all four rails was synonymous with restraining a patient, at least in the eyes of Texas law.

Dad was able to stay in bed for the remainder of the evening.

August 26. Today marked another ominous milestone. It was the 90^th day since Dad started dialysis, which officially made him ESRD (end-stage renal disease), or dialysis dependent. The 90^th day was also dialysis day and Rebecca, his nurse, darkened his door at 7:00 A.M. and wheeled him up to the dialysis center for another eight-hour session.

When Mom arrived at the hospital at 11:30 A.M., she learned that Dad’s WBC count was down to 6.5, which was very normal. Dad’s room was empty, so she asked when the patients usually returned from dialysis. Rebecca said that he would be finished sometime between 1:00-1:30 P.M. Instead of waiting for a couple of hours in his room, Mom decided to drive over to Memorial to speak with the Scott & White SeniorCare Insurance representative. Dad was fast approaching what we were told was the end of his hospitalization insurance coverage and Mom needed to learn more about where he stood and what sort of options were available to us.

Shortly after Mom returned to the hospital she learned about Dad’s escape and attempted escape from the bed last night.

After Dad returned to his room, he asked Mom about his brothers and how many boys his middle brother, Jim, had. He also told Mom that he had been taken away to some special place. Mom explained to him that he had been having dreams and that he hadn’t been taken anywhere, except for dialysis, which was located in the CCH. After Mom clarified the confusion about Dad’s nephews, they seemed to have a more coherent conversation.

With the exception of a couple of golf tournaments, Dad hadn’t been watching any television since May 6. To catch him up on the latest political happenings, Mom brought him the Newsweek magazine that had Donald Trump’s picture on the cover. At the time, Mr. Trump still didn’t seem like he’d make it to the general election, let alone the White House.

Before Mom left for the day, Pastor Don stopped by for a visit. He always seemed to instinctively know when to stop by and cheer up my parents, and he provided the perfect end to Mom’s day at the hospital.

August 27. The blood test results that I used to live by now seemed to be hanging out in the normal zone. You’d think that I would have started to exhale, but I was still very worried about the infection that seemed to lurk in his lungs. It didn’t help matters much that Dr. White had requested another consult from infectious diseases. We hadn’t seen Dr. Sangeetha Ranganath for a few weeks. Mom didn’t catch everything that the doctor said, but Mom did hear that she changed Dad’s antibiotic.

A few days earlier, Dad had had me write down 16 exercises that he planned to perform to build up his strength. Before I returned home to Houston, he had instructed me to leave the list of exercises in his room where he could find them. He seemed months away from being able to perform any of the exercises, but when Jennifer stopped by today for his physical therapy session, he was fixated on them. He kept telling Jennifer that he wanted her to find the exercises for him to complete. She finally was able to redirect him to the task at hand and got him to perform some of the bed exercises, but he flat out refused to perform sit-stands or sit in the chair; in fact, he insisted on getting back into bed. She and Mom both tried to explain how these exercises were important for building his strength, but their pleas fell on deaf ears. Who knows; maybe he wasn’t wearing his hearing aids. Mom was very discouraged. She and I were desperate for Dad to build up his strength, yet he seemed unwilling to participate.

The hospitals were starting to take a toll on Mom. During the past month, she had developed a cough that she couldn’t seem to shake. The danged place was always cold, and she and I kept sweaters in Dad’s room. Throughout the day, she popped cough drops to soothe her throat.

August 28. I drove to Temple this morning and arrived at my parents’ house while my father was still on dialysis. Mom and I met briefly with Dr. Heath White before Dad returned to his room. The doctor said that he had met with Dad earlier and he seemed to be feeling pretty well today. As usual, he mentioned Dad’s waxing and waning delirium, but he also mentioned that his WBC count was holding steady at 6.5. Dad was a little late returning to his room because he had been scheduled for a chest CT scan immediately after dialysis.

The doctor recommended that they replace Dad’s nasal feeding tube with a PEG, which is inserted into the stomach through the abdominal wall, rather than the nose. My father-in-law had had a terrible experience with the PEG, which heavily influenced me to avoid it. I also was concerned with my father’s penchant for pulling out vital invasive devices. Pulling out a nasal tube is one thing; pulling out a PEG would be something far more serious. We told Dr. White that we would consider his recommendation. He was now the third doctor who had recommended this procedure. I surely wish that we had gone the PEG route during his initial stay in Memorial. Perhaps he wouldn’t have aspirated if he had had a PEG. We’d never know, but I had my suspicions.

Dad seemed to be in good spirits when he returned to his room. I hadn’t seen him for several days, and he seemed glad to see me again. We spent a few minutes catching up on the past week, but our conversation deteriorated into a discussion about him leaving. No matter what Mom and I said, he couldn’t understand why he couldn’t go home today.

I decided to leave the room for a few minutes and stopped by the business office to talk with someone about Dad’s remaining benefits. I knew that Mom had spoken with them while I was in Houston, but I was still confused about where we stood and what our options were. Marty was available and she explained that Dad had 35 more days of hospital coverage. She also explained that we would be able to get 100 days of coverage from a skilled nursing facility (SNiF). Other than the fact that I knew that one of my cousins had been in a SNiF, I didn’t know much about them.

Shortly after I returned to the room, Jennifer stopped by for a physical therapy session with Dad. He greeted her by telling her that he felt that he could stand and sit in the chair in his room, versus the cardiac chair. However, she hadn’t been in his room very long before he started complaining of fatigue, which was common for dialysis days. He also told her that he wanted to go home today. Although patients usually get into the Stryker chair from a lying-down position, Jennifer said that she would show Dad how he could stand and pivot into the chair from the bed. Dad felt that he was up to the task and was surprised when he couldn’t do it. Jennifer tried to use his failure to complete the task as a teaching moment about the importance of physical therapy, but I didn’t think that it did much good. She was able to transfer him to the chair after she put a gait belt on him.

Dad stayed in the chair for the remainder of the afternoon. Considering how dialysis usually saps his strength, he was having a pretty good afternoon. While he was still in the chair, the respiratory therapist stopped by and said that his breathing had improved and that they probably would not need to put him back on CPAP tonight.

Around 4:00 P.M., I called for Michelle, his nurse, to help move him back into bed. Dad had had a full day and was starting to get tired. Except for the few tense minutes of discussion about leaving, we had had a pretty good day. Mom and I left the hospital hoping that Dad would sleep well.

Leaving Memorial again. Back in the CCH again.

Published on January 17, 2017 by mellowdee552 Comments

August 20, 2015. As Mom and I drove to the hospital, we realized that today would probably be Dad’s last day at Memorial. We were glad that he had recovered enough to leave Memorial, but we had reservations about the CCH. Except for a couple of cases (good people we had encountered), our feelings about the facility were not positive.

Mom and I arrived at Dad’s room at 7:40 A.M. to find Dad’s legs halfway out of the bed. His nurse, Pam, got him back into bed and then called the doctor about Dad’s delirium. I wiped Dad’s eyes with a warm washcloth, and Pam gave him some Fentanyl, an opioid pain medication, in his feeding tube.

Janie, the respiratory therapist, administered a breathing treatment of Albuterol, followed by oral care. Dad signaled that he wanted the speaking valve now, but he’d been having some difficulty breathing, so he had to remain on CPAP. Janie said that she would move him over to the trach collar around 9:15 A.M. to see how he managed.

Dr. Brett Steven Ambroson stopped by and said that the infectious diseases specialist had recommended a couple of antibiotics for the next few weeks, but added that Dad would probably be on some sort of antibiotic for the rest of his life, or until the antibiotics eventually did no good. Gad.

blogpills Pam said that she spoke with the doctors about Dad’s delirium, and they wanted to fully vent him at night and had ordered an extra dose of Seroquel for him during the day, along with more Fentanyl. She said that the extra meds were ordered because of Amanda’s claim last night that Dad had hit her. This claim bothered me. It might seem like I was splitting hairs, but Dad had been struggling with the group of nurses to keep from being tied up. During the flailing of his arms, she was struck. He did not deliberately strike her. Mom and I were in the room and we saw what happened, and we didn’t realize that anyone had been hit during the ruckus. It was only when they had finally restrained him that one of the nurses said that he had hit it.

Dr. Stewart stopped by to talk with us about Dad’s situation, including the recommendation to fully vent him at night and then wean him off of the vent so that he could get more rest and get back onto the day schedule for the trach collar. He said that the doctors at Memorial would recommend stopping the Seroquel and replacing it with a pharmacy-grade Melatonin, known as Ramelteon. He said that they had had good results with it at Memorial and hoped that the CCH doctors would want to continue it.

At 10:20 A.M., Michelle, the dietitian, stopped by for a routine visit to see if Dad’s nutritional needs were being met. I had sort of a love/hate relationship with this very nice woman, which had more to do with the tube feed than her. Because Dad had aspirated on his tube feed during dialysis, I asked if he could have the tube feed suspended during dialysis. She wasn’t wild about that suggestion because Dad would be in dialysis for about 12-15 hours each week and the nutritional loss for him could be significant. She said that she would speak with her counterpart at the CCH to devise a nutritional plan for Dad. Since her last routine visit with Dad, he had received about 90% of his daily nutritional goals. As she had done during her previous visit, she also recommended the addition of probiotics and fiber to Dad’s diet.

Dad’s DNR order was not valid outside of the hospital, so Mom had to sign a new one for the ambulance ride from Memorial to the CCH. We didn’t expect anything to go wrong, but it still gave me the willies to sign this document and then send him on his way. We had one final visit with Dr. Ghamande and his team. He pretty much repeated what Dr. Stewart had told us earlier. He also mentioned that Dr. White would be the presiding physician at the CCH next week.

At 11:37 A.M., Janie returned to Dad’s room and moved him back to the trach collar in preparation for his transfer to the CCH.

emts_aug_blur Five minutes later, the EMTs arrived to prepare Dad for the trip back to CCH. Because the cuff was deflated on his trach collar, Dad was able to chat with the EMTs without a speaking valve. He seemed to be in good spirits and didn’t exhibit any agitated behavior. The EMTs’ preparations were finished in less than 30 minutes. As they started pushing Dad’s gurney out of his room, Dawn rushed into the room with Dad’s speaking valve and installed it on his trach.

Mom and I arrived at the CCH at 1:05 P.M. and sat in the waiting room for about 20 minutes before we could go see Dad. When we arrived in Dad’s room, we found him chatting amiably with Dr. Randall Smith, our favorite doctor by far. It seemed as though Dr. Smith was conducting a getting-to-know-you type of interview, but he was actually trying to assess Dad’s cognition. Before he left the room, Dr. Smith said that he was going to request a PT assessment for Dad today and have Speech Therapy get started on swallow therapy. We were so glad that Dr. Smith was the attending physician, if only for three more days. Mom and I finally went home for lunch around 1:15 P.M., and I started working online from home at 1:45 P.M.

Mom returned home from the CCH at 5:15 P.M. During the afternoon, I had inadvertently downloaded a virus from a training website and was now being held captive by one of our IT techs while he tried to fix my computer. I was eventually able to tear myself away from my terribly unproductive day and eat dinner with Mom.

We arrived back at the CCH at 7:05 P.M. Dad seemed to be enjoying his speaking valve and was speaking with a clear and strong voice. In that strong voice, he wished for a pair of tiny scissors that he could use to cut his restraints at night. In my perfect world, he wouldn’t have needed the restraints.

Gary, the respiratory therapist, arrived at 7:45 P.M. and administered Dad’s Albuterol nebulizer treatment and trach care. The treatment lasted for several minutes, during which Dad could not talk. As soon as Gary removed the nebulizer device, Winnie, the night nurse, arrived to administer the evening meds. Within a few minutes, Dad started drifting off to sleep. He had had a full day, full of non-stop talking for the past seven hours. We left the CCH feeling pretty confident that he would have an uneventful night and a good night’s sleep. Dad’s latest stay had gotten off to a pretty good start, and Mom and I were feeling much more optimistic about his return to the CCH.

He speaks! At last.

Published on January 10, 2017 by mellowdee551 Comment

August 18, 2015. Mom and I arrived at the hospital at 7:40 A.M. to find that Dad was sleeping and unrestrained, which was a nice change. I spoke briefly with his nurse, Pam, and learned that his WBC count had inched up again to 13.3. I hoped that we would learn something about the results of the BAL test on Dad’s secretions. I woke him and wiped his eyes and face with a cool cloth.

At 8:30 A.M., the wound care team stopped by to assess Dad’s various sores, including a new blister that had just developed yesterday on his right hand. The constant repositioning of Dad by the nurses annoyed Dad but was supposed to reduce the likelihood of bed and pressure sores. I can’t imagine what his condition might have been like without the constant movement. Janie, the respiratory therapist, stopped by at 9:15 A.M. and moved him from CPAP support to the trach collar. She said that the doctor wanted to see whether Dad could handle an eight-hour trial today.

Dad had a moment where he indicated that he was getting out of bed. I wasn’t sure whether he needed the bathroom or just wanted out of the bed. I persuaded him to remain in the bed. My father had always been very focused on completing tasks and achieving goals. This character trait seemed to be amplified in his delirious state. Since his first stay at the CCH, he had been intent on getting out of bed to use a proper bathroom. Unfortunately, accomplishing this goal was not possible at this time, and reminding him of that reality was my daily task.

Around 10:45 A.M., Mom left the hospital to run some errands. We still hadn’t seen the doctors, but we had heard that the MICU had a full house. Also, they seemed to assess patient condition on a curve. If your condition was less critical than the other patients, then you might not see the doctors until early afternoon. We couldn’t find fault with this convention, but it made any sort of planning difficult.

Dad had been coughing up a lot of thick yellow secretions today and seemed to be pretty sleepy and confused. I was concerned that he might be battling some new, or recurrence of an old, infection. At one point he asked me to explain about the bathroom and review what would be happening today.

At 11:15 A.M., the machine that provided oxygen aerosol support for the trach collar stopped making its usual working sounds. The equipment problem didn’t seem to create any breathing problems for Dad, but Pam said that the oxygen line had popped off. Aside from the lack of sound, Dad didn’t realize that anything was wrong. After Janie, the respiratory therapist, arrived, she performed a little maintenance on the machine and provided a little trach care on Dad, which reduced his secretions somewhat.

During rounds, Dr. Ghamande acknowledged Dad’s elevated WBC count and said that they were still waiting for the results of the BAL. He said that barring any unforeseen complications, Dad should be able to transfer to the CCH in a couple of days. He said that they would keep extending Dad’s trach collar trials by a couple of hours a day and continue with CPAP support at night. He thought that Dad should be ready for a speaking valve very soon.

After the doctor left the room, Lanette, Dad’s case manager, told me that according to Cheryl, Lanette’s counterpart at the CCH, Dad has used all of his 90 days of annual Medicare hospitalization coverage, plus 46 of his 60 reserve days. This meant that he would be uninsured in 14 days. I experienced a wave of panic and a knot in my stomach. I couldn’t see any way on earth that my father could go home in two weeks. I had been keeping track of Dad’s days and according to my notes, he had been hospitalized for 105 days, not 136. Until this moment, it hadn’t occurred to me that you could run out of Medicare coverage. It made sense, but I was operating in survival mode and not financial mode. The other unpleasant surprise was that his supplemental insurance was tied to his Medicare coverage. So, although he continued to pay the Medicare and supplemental insurance premiums, he would be uninsured. I sat down with my calendar and recounted the days a couple of times to sanity-check myself. My results differed from Lanette’s, and I called her and contested her calculations. She said she would contact Cheryl, but I was pretty sure that the error was Lanette’s.

Mom returned from her errands and lunch at 12:30 P.M. and I left the hospital for home at that time. Shortly after Mom arrived, a couple of nurses moved Dad to the cardiac chair. While he was in the chair, Travis and Mike, the physical therapists, came by and exercised Dad’s legs. They said that Dad’s progress was very slow and that he had lost considerable strength in his upper and lower extremities. The 105 days in bed had taken a toll on Dad’s strength.

While Dad was still sitting in the cardiac chair, Dawn, a trach nurse, stopped by for a routine trach change. Dawn told Mom that she was handling Svenja’s cases while she was on vacation. By the time that Dawn finished the trach care and left the room, Mom needed to head back to the house.

Mom and I returned to the hospital shortly after 7:00 P.M. Dad was in a very agitated state and insisted that he was going to get out of the bed. Amanda, his nurse, tried to redirect his attention by repositioning him in the bed. Unfortunately, Dad was delirious and was beyond redirection.

When patients use the trach collar to breathe, the trach collar is deflated, which enables the patient to speak around the trach. It’s not the best form of communication, but between the ability to speak around the trach and the letter board, Dad had been able to communicate with us and the various health providers. He started talking about leaving the Mormon church, and then switched to yelling about quitting the hospital union. He warned Mom to run from the Mormons and not let them get to us. He also spoke of membership in the hospital, and he told me and Mom that we should not join the hospital. Maggie, the charge nurse and one of Dad’s former night nurses, came in and chatted with him for a little while. Coincidentally, Maggie was a member of The Church of Jesus Christ of Latter Day Saints. Fortunately, she kept her sense of humor during his ranting about Mormons. He kept talking about bathrooms and coffee and not being around miserable people. After 8:30 P.M., his mental state progressed from agitated to aggressive. Amanda had to get the help of another couple of nurses to restrain him. Dad actively fought the restraints and while flailing his arms, struck one of the nurses. It was an experience that I hope to never repeat. Amanda had administered Seroquel in Dad’s feeding tube before they started restraining him, and she said that he should calm down soon. Mom and I left the hospital, more shaken and drained than we had been in many days, and we prayed that Dad would have an uneventful night. As hopeful as we had been a couple of days ago, we were now worried.

August 19. Mom and I woke up this morning to a broken air conditioner. The normal temperature for central Texas in August approaches 100 degrees. Fortunately, my parents had zoned air conditioning, so the house wasn’t unbearably hot. We were able to schedule a service call before we left home.

Mom and I arrived at the hospital shortly after 7:30 A.M. and saw that Dad was still restrained. We noticed that he was on the trach collar and was breathing hard. We quickly learned that he had been on the trach collar all night. The night staff had taken it upon themselves to extend his eight-hour trial to more than 20 hours. We asked Charma, his nurse, to call Dr. Stewart. When Dr. Stewart arrived, he had Janie, the respiratory therapist, put Dad back on CPAP support. While Janie was making the change, she removed some large clogs from Dad’s throat by using saline to lavage the tracheostomy tube. She said that after Dad’s lungs had had some time to rest, they could move him back to the trach collar. We wanted him to get back on a schedule of using the trach collar during the day and CPAP at night. The doctor wasn’t too thrilled that Dad had not been moved back to CPAP support during the night. While the doctor was in the room, he told us that Dad’s WBC count was now 11.9, which was an improvement from yesterday.

Dr. Stewart then told me and Mom that he wanted to meet with us in a conference room to consult with us about some of Dad’s future possibilities. He started off this consultation by stating that they considered Dad’s recovery to be one of their best achievements and acknowledged our part in that success. He went on to say that he suspected that if Dad did go home, he could have more episodes of pneumonia. He continued by saying that Dad might never fully develop the ability to swallow, and if he did, he could very likely choke on his food and develop pneumonia again. He went on to say that although Dad might never be able to eat peas and carrots, we should let him eat what he wants, regardless of the consequences. He said that there was a good chance that Dad would go home with a trach tube. After that disheartening meeting with one of our favorite caregivers, Mom and I returned to Dad’s room.

Brandon, who was helping Janie, came in at 9:00 A.M. to administer some oral care, which was a disaster. Dad wanted no part of it and spit out the mouthwash. It was ironic how much Dad hated the procedures that were most important to his recovery.

During the morning rounds, the attending physician, Dr. Shekhar Anant Ghamande, told us that Dad had some new drug-resistant infection, which was why there was some purulence in Dad’s secretions. To combat it, they would start Dad on Meropenem, one of the three antibiotics that they could prescribe for this infection. Aside from the infection in his lungs and the pressure sores, Dad was progressing well. The doctor also said that Dad could get a speaking valve today! I had the doctor tell Dad the good news, but Dad asked only if he could go home.

Barbara, one of the hospital chaplains, stopped by to visit Dad. We had come to know her pretty well during Dad’s stay, and she had been very helpful. As I had mentioned earlier, the chaplains were the people to ask about anything in the hospital. During Barbara’s visit, she confided to me and Mom that she was retiring at the end of the month.

When Barbara left, I saw Dr. Pan, the nephrology fellow, in the hall with Dr. Nimrit Goraya, the nephrologist, Dr. Goraya said that they had planned to dialyze Dad for eight hours, but because he didn’t have much edema, they would shorten it to six hours. Instead of being finished at 3:00 P.M., they would finish around 1:00 P.M.

Mom and I left the hospital around 11:30 A.M. for lunch. I spent the afternoon working from home and met with the AC repairman, our hero for the day. Shortly after Mom returned to the hospital after lunch, she met Pastor Don in the MICU waiting room, and they had a nice visit before entering Dad’s room.

Mom called me during the afternoon to tell me that Dad still didn’t have a speaking valve. She couldn’t remember if he was to get one today or tomorrow. I told her that the doctor had said that he should get the speaking valve today. I had her tell Dad’s nurse call Dawn, Svenja’s backup while she was on vacation.

trachPMSpeakingValve — Passy-Muir speaking valve

Shortly before 4:00 P.M., Dawn stopped by to change Dad’s trach tube. This change was different from yesterday’s change because this time she also changed the size of the trach. The new size would enable easier swallowing, which would help Dad control his own secretions. Whenever we swallow or clear our throats, we’re handling normal secretions. The presence of a trach tube makes that normal activity more difficult. This new trach tube had a smaller outer diameter, but a larger inner diameter. This sizing combination would enable Dad to inhale more oxygen and swallow easier. The icing on this new trach-tube cake was that the new trach tube could accommodate the Passy-Muir speaking valve. As soon as Dawn placed the speaking value on the trach tube, Dad was able to speak again. WooHoo! Unfortunately, she had to remove it to put Dad back on CPAP support.

Mom came home shortly after the trach tube change-out and told me that Dad was still on CPAP. I called the nurse and reminded her that he was supposed to go back onto the trach collar at 2:00 P.M. The dilemma was that he could not sleep with the speaking valve, so even if he could sleep with the trach collar, he couldn’t speak. During times when he was receiving CPAP support, he couldn’t have the speaking valve. We just had to get him back on a schedule that would enable him to speak during the day.

When we arrived at the hospital shortly after 7:00 P.M., Dad was still on CPAP, but Renee, the respiratory therapist was in the room. I spoke with her and Amanda, Dad’s nurse, about my concerns, and they said that they would get him back on schedule during the night.

Renee switched Dad to the trach collar for the remainder of our visit so that Dad could talk with us. We had some strange conversations with Dad. It seemed like he thought that he was back at work. He finally adjourned our meeting at 8:00 P.M., and told me and Mom to leave.

A cool front had passed through the area and Mom and I took a couple of moments to enjoy the cooler night air. As we drove home, we marveled at the spectacular sunset. We stopped at the field behind the new Valero gas station to look at the sunset before heading home.

Back in the letter board saddle again

Published on January 4, 2017January 8, 2017 by mellowdee55Leave a comment

Saturday, August 15, 2015. Shortly after I arrived at the hospital at 7:45 A.M., Dr. Hayek ordered Dad moved Dad from BiPAP to CPAP support on the ventilator. They then reduced the settings to less support and let him breathe at the lower setting for about 30 minutes before putting him back on the trach collar. The attending physician, Dr. Ghamande, wanted Dad to have at least four hours on the trach collar today. If this trial worked out well, then they would attempt a six-hour trial tomorrow. During the nephrology visit, Dr. Goraya said that it was unlikely that Dad’s kidneys would function again, although they couldn’t say anything definite for another few weeks. Medicare requires that you be on dialysis for 90 days before you can be declared dialysis dependent. Although the 90^th day was just around the corner, the nephrologists seemed hesitant to declare that Dad had end-stage renal disease (ESRD) until he reached this milestone.

During my morning update of Dad’s early-morning lab work, I was told that his WBC count had inched up slightly from 10.4 to 10.7. It was still within the normal range, and I was provided the usual song-and-dance routine about how you have to treat the whole patient and not just look at the numbers, but his numbers had not just stopped trending downward, they were moving in the wrong direction. After 102 days, I couldn’t help but worry.

At 9:09 A.M., Pandora, the respiratory therapist, put the trach collar on Dad. He was now breathing on his own again. Leslie, his nurse, then asked him the following three questions to test his mental facilities: 1) Could you hit a nail with a hammer, 2) Can a leaf float on water, 3) Is a one pound rock heavier than a two-pound rock. He did OK on the first two, but answered “sometimes” to the last question.

For the second day in a row, Dad wanted some of our coffee. Mom and I decided that we should quit drinking coffee in front of him. I wondered if he could smell the coffee.

Shortly before 10:00 A.M. Leslie, the nurse, moved Dad into the cardiac chair. At 11:00 A.M., my husband, Stan, texted me that he had arrived from Houston. Mom and I left shortly thereafter to join him for lunch at the house.

After a nice lunch with Stan, Mom and I returned to the hospital at 12:40 P.M., while Stan stayed at the house and did some yard work. Dad was still sitting in the cardiac chair. He kept trying to talk and became pretty frustrated. His breathing trial was over at 1:15 P.M., and Pandora removed the trach collar and moved him to the CPAP setting on the ventilator.

At 1:50 P.M., Leslie rounded up a couple of nurses to help her move Dad from the chair to the bed, where he promptly fell fast asleep sitting up in bed. The ventilator started alarming, which drove Mom crazy. I guess it takes a certain type of alarm to get the attention of a nurse or respiratory therapist. In this case, water had accumulated the lines, which wasn’t life threatening. Unfortunately, we weren’t permitted to touch anything; we just had to listen to and endure the alarm while we watched nurses and aides walk past the room.

At 4:55 P.M., Mom went downstairs to the lobby to meet Stan. I wandered into the hall and happened to meet a nurse that we had dubbed as Daytime Natalie. She was a nurse in the CTICU, and Mom and I were very fond of her. She had a couple of minutes to spare and stopped in to visit with Dad.

Mom, Stan, and I ate dinner at a local restaurant to celebrate Mom’s birthday. Her birthday was tomorrow, but this was Stan’s only night in Temple. After dinner, Mom and Stan went home and I returned to the hospital and met Dad’s night nurse, Janine, and his respiratory therapist, Tatyana. Shortly after I arrived, Dad starting started indicating that he wanted to get out of bed, and continued in earnest until I finally was able to leave around 8:45 P.M. Starting at 8:15 P.M., I had started receiving text messages from Stan, asking if everything was OK with me and Dad. Every time I tried to leave him, he would grab my arm and want me to stay five more minutes. I felt more than just a little guilty when I left.

August 16. Mom’s birthday got off to a nice start with cinnamon rolls and some nice gifts from Stan. As Mom and I were driving to the hospital, my phone rang, but my purse was in the back seat and I couldn’t grab it before the call went to voice mail. I pulled over and noticed that the call was from Scott & White. Leslie, Dad’s nurse, had left a message saying that Dad was very tired and needed to rest. She went on to say that she was a little worried about him this morning and that she had contacted Dr. Stewart, who then put him back on the ventilator. She did not want us to wake him. If Leslie was trying to discourage us from racing to the hospital, she was failing miserably.

We encountered Dr. Goraya on the way into MICU, and she said that they would not be dialyzing Dad today. While talking with Leslie outside of Dad’s room, she said that she had been looking through the last few weeks of Dad’s charts, and by all rights, he should not be here now. Her comment made me feel good about his progress, but his condition was still very fragile.

I called Stan and told him about Leslie’s call, and that I still wanted him to come by the hospital while Mom and I were at church, but that Dad might be sleeping and that Stan should bring something to read. Should Dad wake up, then Stan could interact with him. I also wanted Stan to be with Dad, if the doctors should stop by while Mom and I were attending church.

When church was over, I texted Stan to let him know that Mom and I were heading home. He said that Dad woke up around 11:00 A.M., and that they were stepping him down to the trach collar for another six-hour trial today.

After our lunch, Mom and I arrived at 1:30 P.M. at the hospital and met Stan in the waiting room. He had been shooed out by the nurses about 10 minutes earlier. We were pleased to see that Dad was in the cardiac chair and breathing on his own with the trach collar when we arrived. Dad’s breathing trial started around 1:25 P.M. We had the TV turned on to the PGA tournament. Watching TV might not seem like a milestone, but he had probably watched no more than a couple of hours of TV since he was admitted on May 6. It was nice to see him interested in something.

Mom left the hospital for home around 4:25 P.M. About five minutes after Mom left, Dad finally tired of the breathing trial. He was still on the trach collar when I left at 4:45 P.M. His trial didn’t last much more than three hours, but considering how badly the morning started, we were pleased with his trial.

After dinner, we arrived at Dad’s room at 6:55 P.M. and spoke with Leslie for a few minutes before she left for the day. She said that Dad had been wearing her out. He’d been wiggling down the bed all day, in what seemed like attempts to escape from the bed. She finally made his bed alarm a lot more sensitive so that it would alarm whenever he wiggled down to one end.

Leslie said that she noticed during the day that Dad’s secretions had seemed more yellow and thicker than normal. She said that she had talked to the doctor about ordering a sputum culture. She said that it might not be anything because he’s not running a fever. The WBC count wasn’t collected during the early morning lab work, so I didn’t know if his WBC count was elevated.

Dad’s night nurse was Amanda. When she completed her evening assessment, she told us that his temperature was 98.7, which is practically normal for most people. However, normal for Dad was just over 97 degrees. It probably wasn’t a big deal, but I hoped that the sputum culture tomorrow would reveal something.

August 17. Mom and I arrived at Dad’s room a little after 7:30 A.M. and found that he was restrained and was already receiving conventional dialysis. His nurse, Jasmine, and another nurse were repositioning Dad in his bed, so his curtain was closed. While waiting in the hall I spoke briefly with Amanda, his night nurse, and she said that during her shift, Dad had tried repeatedly to pull out his trach tube. When she explained to him what that would mean, he indicated that he didn’t care and wanted to “be done with it.” To calm him, she gave him some Seroquel. As Dad’s health improved, it seemed that he was his own worst enemy.

Jasmine, Dad’s nurse, later told him that she would remove his restraints if he promised that he would not try to pull out his trach tube. She stressed to him that his safety was her primary concern. He indicated that he would not pull out anything. Jasmine told us that they would put the trach collar on him later today so that he could better express his wishes. Her comment sort of implied that he might get a speaking valve, but I wasn’t sure. I was a little disturbed when I learned that Dad’s WBC count was up to 13.2. Based on Leslie’s comments yesterday and Dad’s elevated WBC count, the doctor had ordered a Bronchoalveolar lavage (BAL) to see if Dad had any new infections.

Dad finally used the letter board and asked lots of questions about his stay. He didn’t realize how long he had been in the hospital and was very surprised when he heard what happened to him. I spent a long time explaining some details about his saga and I think that it helped to improve his attitude. Shortly after that, we started communicating more with the letter board. He seemed to be a lot calmer and seemed to understand more about his circumstances. letterBoard

Shortly before 11:00 A.M., I told Dad that Mom and I had to leave to attend a meeting with April Jones, the nurse manager at the CCH. We wanted to ensure, or try to ensure, that his second time at the CCH would be better than the first. He seemed pleased and lettered that he would be interested in knowing what she had to say. Following an annoying and frustrating meeting with Ms. Jones and her associates, Mom and I returned home for lunch. I stayed home and worked for the remainder of the afternoon.

When Mom returned to the hospital after lunch, a nun from the hospital’s chaplain office was in Dad’s room singing to him. Using his letter board, Dad told the nun to sing a song to Mom. Dad had already given the nun one of the family photos that I had taped to the wall. She said that she’d hang it in the chapel. Mom found the experience pretty surreal and realized that from one minute to the next, she never knew what to expect from Dad.

After pleading unsuccessfully for days to get Dad to use the letter board, it seemed that he now would not put it down. From what Mom was able to surmise, Dad whipped out the letter board for every person who entered the room—the nurse, doctors, and techs. Using the letter board, he asked Dr. Ambroson to take him to the kitchen, which tickled the doctor. In hindsight, this request was an indication that Dad was having trouble distinguishing the difference between home and the hospital. However, it seemed like a different person was now occupying Dad’s bed.

When Dad’s dialysis session was over, Dawn, the respiratory therapist, put on the trach collar. Then the nurses moved him to the chair. As Mom left the room, Dad used the letter board to tell her to be careful.

When I arrived at Dad’s room at 6:45 P.M., he was still in the cardiac chair, but he was soon moved back to his bed. Dad and I visited until 9:00 P.M. Using the letter board, he asked lots of questions about eating, going home, and many other things. He seemed to have lost some of the clarity that he had during the day, which I attributed to being exhausted from such a busy day. When I left, he still had one more hour remaining on his six-hour trial of the trach collar.

His night nurse, Amanda, said that she would give him some Seroquel this evening after the breathing trial and that he should sleep well. I wasn’t over the moon about Dad’s level of clarity this evening, but he had had quite a day communicating with everyone. I left the hospital hoping that the next day would be even better.

100 days and counting

Published on December 29, 2016 by mellowdee552 Comments

August 12, 2015. Mom and I arrived at Dad’s room at 7:45 A.M. Dad was on a four-hour conventional dialysis trial to judge his tolerance. I freaked out when I saw that his feet were elevated above his head. During dialysis, patients who suffer from hypotension often have their feet elevated above their heads to their increase blood pressure. With his history of aspiration, that practice could not be applied to him. Olga, his nurse and the one who had elevated his feet, responded to my outburst and raised his head.

After Olga had repositioned Dad, I asked her about his morning lab results. I was thrilled to learn that his WBC count had dropped further and was now at 11.3. A normal WBC count seemed within sight!

Mom’s birthday was in four days, and we were anticipating that Dad would be at home when we celebrated his birthday on October 6. I thought that we should have a four-tier birthday cake on Dad’s birthday—one tier for each of the birthdays we missed celebrating this year. Dad seemed to brighten up at idea and indicated that he wanted chocolate, Mom wanted carrot cake, I wanted rum cake for my layer, and I decided that Stan wanted apple cake.

During rounds, we met the new attending physician, Dr. Shekhar Anant Ghamande. He said that Dad was progressing and that things were getting better, but that Dad needed some exercise.

Dad was a bit difficult to handle. He kept trying to talk, which was impossible, and he refused to use the letter board to communicate. Other than learning that he wanted chocolate cake for his birthday, we had no successful communication with Dad.

The conventional dialysis trial, which Dad completed without much difficulty, was over at 1:15 P.M. Dad was moved into the cardiac chair, but he would not put his feet on the chair’s foot stand. Without his feet on the foot stand to stop him from sliding off the chair, the nurse had to reposition him in the chair every few minutes. Mom left the room for a few minutes and when she returned, she heard singing coming from Dad’s room. While she had been away, a Catholic nun from the hospital’s chaplain office had stopped by to see Dad. With Dad’s refusal to use the letter board to communicate, I couldn’t imagine how they communicated.

Dad tired of sitting in the chair and wanted to get back into bed. The nurse had left the room to find someone who could help her, but while she was gone, an ultrasound tech arrived and spent about an hour checking Dad’s legs and arms. The nurse later said that by the time that the tech left the room, Dad was as inspired to transfer back into bed as she had ever seen him. We never did learn about the purpose of the ultrasound, but at least a couple of us were glad for his extra time in the chair.

When Mom and I returned to the hospital after dinner, we were pleased to see that Dad was sleeping and that Tyler was his nurse again. It was the first day in many days that I could tell Stan that we had had a good day today.

August 13. As Mom and I drove to the hospital, we realized that Dad was starting his 100^th day in the Scott & White institution. We arrived at the hospital at 7:35 A.M. Dad was restrained, but I quickly removed the soft restraints.

Dad was all hot and bothered to get out of the bed at 7:45 A.M. Anna, his nurse, was pretty busy, so we had to wait until 9:45 A.M. to get him into the chair. During Dad’s initial stay in the ICU, he hated the uncomfortable chairs, and practically fought to stay in bed. Mom and I were glad that he now wanted to get out of the bed.

At 10:00 A.M., Travis and his entourage of occupational and physical therapists stopped by to exercise Dad. They stood him up from the chair and onto the floor. Dad’s legs would not straighten out, but he was able to kinda sorta stand, with some assistance. The therapists worked with him for about 10 minutes, moving his arms and legs. Cardiac chairs are designed to take patients from a recumbent to a sitting position. You don’t usually step out of or into a cardiac chair. Getting Dad resituated into the chair was a real struggle for the three therapists, but they eventually succeeded.

Mom left the room to call April Jones, the nurse manager at the CCH, to see if she could make an appointment to meet with April next week. We had not been thrilled with our previous experience with them and wanted a better relationship the next time. Mom wanted to start working on that now.

While Dad was in the chair, Michelle, the dietitian, had stopped by for one of her routine visits. In addition to her usual concerns about Dad’s nutrition, she was now concerned about the extended use of antibiotics and how they could affect his digestion. She said that she would suggest that the doctors consider starting him on probiotics. I don’t know if they ever did add probiotics to his daily regimen of meds.

After Dad got back into bed, he slept for 10 minutes and then woke up and started worrying the bed linens and pulling on his lines and trach tube. Dad seemed to be having lots of secretions, and he seemed to be struggling to breathe. Nikita, the respiratory therapist, happened to walk past the room as he was having breathing problems. She said that Dad had been on CPAP since 7:00 A.M. She thought that it was time to give his lungs a break, and switched him back to BiPAP support shortly before we left for dinner.

Mom and I returned to the hospital at 6:40 P.M., just prior to the shift change. The big pleasant surprise for us was that Andrea was Dad’s night nurse. She had been his nurse for the first three days when Dad returned to Memorial, and Mom and I loved her. When we first met her, Andrea had mentioned that she usually liked working nights, and we were glad to see her again and assigned to Dad. She commented on how much Dad had improved since she had last seen him 19 days earlier.

Mom and I stayed with Dad until about 8:00 P.M. On the way out of the hospital, we walked over to the Cardiothoracic Intensive Care Unit (CTICU) in the north tower, which was where Dad stayed during his first stint at Memorial. In addition to seeing a couple of the nurses we knew, we were enthusiastically greeted by a nurse we didn’t remember. Mom and I were really touched by the outpouring of support that we received from some of the caregivers in CTICU. Today had been another pretty good day, and we left the hospital at 8:15 P.M., feeling like Dad would have a relatively good night.

nursestation — View of nurses’ station from Dad’s room

August 14. Mom and I arrived at the hospital at 7:45 A.M. to find that again Dad was restrained. Evidently, Andrea had had to restrain him about four hours earlier because he was trying to pull out his trach tube and PICC line. As I had done for the past few days, I untied Dad’s restraints. Almost immediately, Christine, his nurse, reprimanded me for removing his restraints and reminded me about the importance of restraints and notifying the nurses, and blah, blah, blah. I had a pretty good relationship with most of the nurses and caregivers, and they knew that we were a constant presence in Dad’s room. It wasn’t as if Christine had never laid eyes on us. Dad’s room was right in front of the nurses’ station. While I understood the importance of the restraints for patient safety, I was annoyed at the cavalier attitude that some nurses seemed to have about them. As far as I could tell, restraints were used because the hospital could not assign someone to watch him. Wouldn’t you think that a nurse would ask family members if they would or could stay with the patient so that they could remove the restraints? My father wasn’t unconscious; he knew that he was tied to the bed. Who in the world would think that being restrained was good for patient morale?

On a more positive note, Dad’s WBC count was down to 10.4, which was finally in the normal range; it was a tad on the high side, but normal nonetheless.

Drs. Hayek and Stewart (who I affectionately dubbed the fellows) stopped by and we discussed the status of Dad’s breathing and the possibility of having the speaking valve trial on Monday. However, before Dad could get a speaking valve, he had to be able to breathe on the trach collar. Dr. Stewart told us that the respiratory therapist would stop by later in the morning to make the switch.

It was Friday, the day we referred to as the last day of dialysis for the week. As Carlos, the dialysis nurse, was setting up the dialysis machine, Dr. Nimrit Goraya, the attending nephrologist, stopped by with her nephrology fellow and residents in tow. She told us that because Dad had tolerated the last conventional dialysis trial, he would receive another four hours of dialysis again today. Carlos got the dialysis started at 9:30 A.M. In principle, Dad’s dialysis session would be over by 1:30 P.M.

During Dad’s morning trach care, Ashley, the respiratory therapist, changed out the ventilator apparatus for a trach collar and trach mask. The trach collar test was on!

I stayed home after lunch, but Mom returned to the hospital at 1:00 P.M. Shortly after she arrived, Dad started foaming around his trachstoma. She quickly located Ashley and Dr. Stewart, who said something about a hypoxic episode. Ashley switched Dad back to the ventilator. Although Dad had failed his initial breathing test, Dr. Stewart said that it was still a good day. Unbelievably, Dad slept through the whole ordeal, and he slept for the remainder of the time that Mom was with him.

Dad’s dialysis session was over at 1:15 P.M., and they were able to remove 1,400 ml of fluid without any instances of hypotension, which moved him one step closer to being discharged from Memorial to the CCH.

I arrived at the hospital at 6:45 P.M., and once again was very pleased to see Andrea. Dad was awake and looked pretty good. However, soon after I arrived he became very agitated and wanted to get out of bed. He insisted that he needed to get out of bed to use the bathroom. I had to hold him down. He tried to push me away, but for the first time in my life, I was stronger than him. He kept edging his feet over to the side of the bed like he was trying to get up. He finally started pulling his pillow out from behind his head and indicated that he was uncomfortable. I called Andrea and told her that Dad needed to be repositioned. Andrea and another nurse respositioned him, which seemed to calm him a little and divert his attention from his original purpose. Because of his agitation and the fact that he had had to be restrained the previous two nights, Andrea also gave him some Seroquel through his feeding tube. According to Andrea, the doctor had increased Dad’s dosage of Seroquel for nights when he was restless.

I was shooed out of the room at 7:45 P.M. so that Andrea could tend to him. I probably wouldn’t have been able to come back into his room for at least 15 minutes, so it seemed like a good time to go home. Dad had been so distraught during the time that I was there that I hated leaving him, and left feeling a little conflicted. It just hadn’t felt like a good day.

Condition stable; prognosis guarded

Published on December 15, 2016 by mellowdee551 Comment

sunflowersbg3 August 7, 2015. Mom and I arrived at the hospital at 7:45 A.M. Dad was still receiving CPAP breathing support. We were surprised to see that he was not having dialysis, but we had scarcely put down our purses when Lucy, the dialysis nurse, stopped by and said that she had been told to set up the (traditional) four-hour dialysis session. As she left the room, Dr. Lu Pan, the nephrology fellow, arrived and said that they were going to try the four-hour dialysis to see how Dad tolerated it. Mom and I were emphatic that he was not yet strong enough, and that Dr. Yau had agreed with us yesterday that he was not strong enough. Either the doctor had been patronizing or lying to us, or he had neglected to update Dad’s chart. I was not feeling too charitable with my suspicions.

After the nephrology gang left the room, Shannon, Dad’s nurse, told us that Dad’s WBC count was still on a downward trend and was now 17.6. Although his liver was still in shock, his lab work indicated that it was recovering, albeit slowly. She put drops in Dad’s eyes and got him situated in bed and ready for the day. She told us that when the doctor stopped by on rounds, he would discuss Dad’s dialysis plan with us.

I tried again to get him to do some type of exercise but struck out. Although both of my parents could be pretty determined, it had become pretty obvious to me, and probably my husband, that I had inherited the stubborn gene from Dad.

During morning rounds we learned that Dr. Alfredo Vazquez-Sandoval was now the attending physician. He told us that he would order a transesophageal echocardiogram (TEE) to verify that Dad’s new heart valve was still infection free. In an attempt to reduce Dad’s sleepiness, the doctor said that he would reduce Dad’s dosage of Seroquel, which they were giving him for delirium. He also talked about replacing Dad’s nasal feeding tube with a PEG, which would be inserted directly into his stomach. After my father-in-law’s terrible experience with a PEG, I had some strong opinions about this option and refused to entertain the suggestion. Because of Dad’s low blood pressure, the doctor said that Dad would have the eight-hour (and gentler) dialysis session today. You would think that with Dad’s improved status, these morning meetings would get easier. If only. On the one hand, he seemed to be getting better. On the other hand, his prognosis was still guarded. The cynic in me thought they’d like to get him out of the hospital so that his death didn’t adversely impact their survival statistics.

Lucy returned shortly after 10:30 A.M. to set up Dad for another eight-hour dialysis session. Dialysis started shortly before 11:00 A.M. Dialysis made Dad pretty sleepy, so Mom and I decided to leave for an early lunch and to run some errands.

I had to work from home during the afternoon, but Mom returned to the hospital after lunch in time to witness torture in the form of a blood draw. Under the best of circumstances, my Dad is what’s known as a bad stick. Shortly after his surgery in May, a nurse used ultrasound to find a vein so that he could start an IV. Today, the nurse told my mother that they needed two blood samples for a blood culture test and that only one sample could be taken from the PICC line. Not surprisingly, the lab technician had a difficult time finding a good vein, trying four times before she was finally successful. I hope the day will come when we won’t need a vial of blood for some of these blood tests. Although Elizabeth Holmes’ company, Theranos, has come under fire from the medical community, I hope that they’re successful.

Around 2:45 P.M., Lucy increased the speed of the dialysis blood transfer. She had scarcely left the room when the dialysis machine started making noise, which prompted Mom to leave the room and look for assistance. She quickly encountered Lucy, who returned with Mom to the room and decreased the blood transfer rate of the dialysis machine. I had mentioned in an earlier post that the dialysis team had customized the different warning and alarm sounds on these smaller dialysis machines. When these systems encountered problems, ranging from low patient blood pressure to clogged lines, the room sounded like you were in the middle of the “Who Framed Roger Rabbit” movie. The sounds emanating from this machine were unnerving.

The physical therapist stopped by and left a printout of some simple bed exercises with Mom. Mom said that at some point during the afternoon, someone, perhaps a social worker, stopped by to talk to her about Dad’s experience. She didn’t get a card or a name and Shannon (the nurse) had not seen anyone. Because of my less-than-fond feelings toward the case managers, I was suspicious about why this woman had been there, but I didn’t have any way in which to follow up on this impromptu meeting.

When I returned to the hospital after dinner, Dad was sleeping. Because I arrived before the shift change, Shannon was still there and was able to update me on Dad’s condition. She told me that because of his TEE that was scheduled for tomorrow morning, he would be NPO during the night.

Dad was still sleeping and didn’t wake up when I rubbed his hands and feet and moved his arms, so I decided that it was time for me to leave for the night.

sunflowersbg4 August 8. Mom and I arrived at Dad’s room at 6:30 A.M. The room was dark and Dad was still sleeping. Jennifer, his nurse, arrived at 7:30 A.M. and started her morning assessment of Dad. When she was finished, she told us that the night nurse told her that Dad was very agitated during the night. I wasn’t sure what that meant, but it didn’t sound good. On a more positive note, Dad’s WBC count was still trending downward.

Dad was still on BiPAP support from the night, but Dr. Hayek, one of the pulmonary fellows, said that he would put Dad back on CPAP after he was more awake. When Dad was sleeping, he sometimes quit breathing. It was almost like his body couldn’t remember to breathe when he was asleep–just another thing that made me nervous.

Dr. Brett Ambroson, the resident, came by to talk with us about Dad’s current condition. The TEE was still planned for this morning, and they’d be doing the procedure in Dad’s room. We were still waiting for results of the blood cultures from yesterday afternoon. Dr. Ambroson said that they were still working on a plan to transfer Dad to the dreaded CCH.

Dad got mad and frustrated and started flailing his arms. I used his anger and redirected it to more positive activities—like exercise. For about 15 minutes I was able to push against his arms as he struggled to raise them. It was the most resistance exercise that he had had in weeks.

At 9:40 A.M., Dad received his morning meds through his feeding tube. Shortly thereafter, he fell asleep and quit breathing. Fortunately, when the CPAP system detects that he hasn’t breathed in a few seconds, and the ventilator kicks in. He started breathing again after a few moments. He experienced a few more rounds of this breathing/not breathing scenario in the morning. His best breathing had occurred when he had been mad and exercising.

Dr. Vazquez and company stopped by during the morning rounds. He said that he was increasing Dad’s dosage of steroids to help with Dad’s adrenal glands and to help raise his blood pressure. He told me that the TEE procedure would be postponed until Monday, which meant that Dad had been NPO for more than 12 hours for no reason.

Dr. Munsche and the nephrology team stopped by and told us that Dad wouldn’t have dialysis this weekend. They plan to start dialysis again on Monday. She said that they should be able to continue dialysis on Monday during the TEE.

Dad had continued to have trouble maintaining steady breathing. Around 10:30 A.M., Dr. Hayek moved him back to full ventilator support. The plan was that they would move him back to CPAP support after lunch when I tried to get him to exercise. Maintaining a regular breathing pattern was another good reason to exercise him.

Mom and I returned to the hospital at 1:15 P.M. Dad was still asleep and still on the ventilator. We didn’t want to wake him, so we started reading our respective books and devices. Almost immediately, I fell asleep on the couch and Mom fell asleep in the chair. All three of us woke up an hour later when Jennifer and another nurse repositioned Dad in his bed.

Around 3:30 P.M., Dad started getting very agitated and I couldn’t get him to calm down. Jennifer and I discussed giving him Seroquel, the delirium drug, to avoid having to restrain him again. As it was, Dad’s agitated behavior was interrupted by some bedside treatment, and Mom and I had to leave his room. When we returned to his room 15 minutes later, he was sleeping. Mom and I didn’t feel like we were adding much value, so we left for home at 4:15 P.M.

When I arrived back at the hospital at 7:10 P.M. he was asleep, but restrained. While I was watching him sleep, his MAP dropped to 56. Dustin, the night nurse, came in and checked the monitor and said that it looked like Dad’s heart rhythm had also changed. He contacted the doctor, who told Dustin to start Dad on a saline bolus to see if they could raise his blood pressure without drugs. This was the first time that I was aware of that they had tried this approach to raising his blood pressure. To the layperson who didn’t know better, saline seemed like a better alternative than a vasopressor.

While we were waiting to see if the saline would do the trick, I asked Dustin about the restraints. He said that about an hour after we had left for dinner, Dad started pulling at his trach and then disconnected himself from the ventilator, so they had no choice but to restrain him. He also said that they would start him back on the Seroquel tonight.

At 7:54 P.M., Dad’s MAP finally rose to 65. I had scarcely exhaled in relief when it dropped back down to 56. I couldn’t be sure, but it felt like Dad’s low blood pressure was having an inverse effect on mine. It certainly affected my level of stress. Dustin checked again with the doctor, and they decided to continue the bolus therapy. After Dad’s MAP reached 68 and remained at that level for a while, I chatted with Dustin and left the hospital at 8:40 P.M. Between the restraints and his sudden struggles with hypotension, I wasn’t confident that Dad would have a good night. Nor was I sure that I’d get much sleep.

The good, the bad, and the sad

Published on November 29, 2016December 6, 2016 by mellowdee55Leave a comment

hospitalbed August 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.

xmas2014 While 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.

We’ll take your danged ten percent odds!

Published on November 15, 2016 by mellowdee551 Comment

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.

family Shortly 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_thumb When 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

Published on November 8, 2016 by mellowdee55Leave a comment

interlocking July 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.

questionmarks The 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?

Published on November 1, 2016 by mellowdee55Leave a comment

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.

ack His 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.

words When 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.

Shortly 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.