dysphagia – Page 3 – Tale of Two Parents

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.

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.

We held on to positive moments

Published on October 25, 2016 by mellowdee551 Comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

sunflowervase2 When we returned to Dad’s room at 7:00 P.M., we were thrilled to see that Tyler was Dad’s night nurse again. Nights were scary for me and Mom, and knowing that Dad was in good hands gave us some peace of mind. Dad’s vasopressor dosage had inched down again, which was also wonderful to see. Unfortunately, the oxygen setting on the ventilator was still set to 50%, which meant that Dad’s oxygenation was still shaky.

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

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

Taking it one hour at a time

Published on October 12, 2016October 14, 2016 by mellowdee551 Comment

sunflowers1 July 24, 2015. The call that we dreaded from the hospital during the night hadn’t come. We didn’t know what to expect today, but we had to take it one hour at a time.

When Mom and I arrived at the hospital, we found that Dad was back on dialysis, for the fourth time this week. According to Andrea, his nurse, Dad was less responsive this morning, which was not what we wanted to hear. She added that, according to his morning lab work, he was still suffering from metabolic acidosis. She had been able to wean him off of one of the vasopressors, but his blood pressure dropped below 65 MAP during dialysis, and they had to restart the vasopressor. When I asked her about his WBC count, she told me that it was up to 18.9, a 300% increase in less than 48 hours.

Dr. White started his rotation today as the attending physician. We now had what seemed like a long relationship with this doctor, and he didn’t pull any punches with us. He told us that because of all the vasopressors that Dad was taking for his low blood pressure, his toes were being affected and he might lose a couple of them. The doctor strongly suspected that Dad’s circulation problems would begin to move up his extremities. Dad’s liver was also in shock, and the good doctor said that he was surprised that Dad had been able to withstand the dialysis. He also stated that Dad’s pupils were nonresponsive and he did not withdraw from pain, even when taken off sedation. He reiterated Dr. Sanchez’s prognosis from yesterday in that he did not expect Dad to survive this episode. At the end of this uplifting visit, Mom and I felt that we might need to make a decision tomorrow or Sunday.

Pastor Don stopped by around 1:45 P.M., and Mom and I had a very emotional visit with him. I just couldn’t believe that this was happening, and Don said that it was OK for me to be mad at God. I was mad, frustrated, and heartsick, but I don’t think that I reached the point of being mad at God. Among other things, Don asked us if we had considered hospice. I wasn’t sure whether hospice care was available at the hospital or some other location. At that point, I hadn’t considered anything, and I wasn’t ready to think about it.

Shortly after Don left us, I walked over to the north tower to visit with some of the CTICU nurses. I found a couple of our favorite nurses and provided them with a brief update on Dad’s status. When I returned to Dad’s room, I learned that Andrea had been able to wean Dad off of two of the five vasopressors, and his blood pressure seemed to be stable. This was the first good news since Dad’s return to Memorial, and I could feel myself exhale. I said a silent prayer that we could wean Dad off the remaining vasopressors before he lost any extremities.

Later in the day, Pastor Don stopped by again with his wife, Wynn. Mom had met her two nights earlier, but this was the first time that I had met her. I found her to be delightful and I was pleased to learn that she worked in the chaplain’s office at the hospital.

Vasopressors increase blood pressure by constricting the blood vessels. This constricting of blood vessels is particularly acute in the extremities and in situations like Dad’s, toes and fingers sacrifice blood flow for the benefit of the vital organs. Andrea tried to find Dad’s pulse in his feet with her hands, but couldn’t. She eventually was able to find a pulse in both feet with a Doppler ultrasound. The relief among those of us in the room was palpable when we heard the sound of blood flow.

Mom and I went home for dinner and returned to the hospital at 7:15 P.M. Charlie, the respiratory therapist, had just finished Dad’s trach and oral care and ventilator maintenance. Dad was still on three vasopressors. Mom and I met Donna, the night nurse, before leaving for the night. She told us that Dad had additional blood draw after dialysis and that his WBC count was now 22.7, up another 4 points from this morning. His WBC count hadn’t increased at this rate since his first aspiration episode in May.

I should have been encouraged that Dad had survived another day, but I was concerned about Dad’s worsening responsiveness. I couldn’t stand the thought of losing him without being able to communicate with him one last time. I had mentioned to Andrea that I wanted to talk with a respiratory therapist to see if there was a way in which we could communicate with him.

July 25, 2015. Mom and I arrived at Dad’s room at 7:15 A.M. We were pleased to see Andrea again, but nurses work only three days each week, so we knew this was our last day with her. Dad’s WBC count was now 19.2, down slightly from yesterday afternoon, his hemoglobin was down, and his acidosis condition had improved to the point that he was now slightly alkaline. Dad had been receiving a bicarbonate drip, which they now decided to stop. The vasopressors were still affecting the blood flow in Dad’s feet. We held our breath again as we watched Andrea struggle to find a pulse with the Doppler ultrasound.

Dad was sleeping a lot, and Andrea said that he was not responding to commands, but he opened his eyes for her. He opened his eyes for me, too, but I couldn’t get him to squeeze my hand.

Charris, one of the residents assigned to Dad, told us that when Dad arrived a couple of days ago, they performed a mini bronchoscopy on him to take some cultures from his lungs. They now knew that in addition to the aspiration pneumonia, he also had an infection (pseudomonas) in his lungs. Severe cases of pseudomonas generally occur in people who are already hospitalized with another illness or condition, or people who have a weak immune system. It seemed that everything that ailed Dad now was hospital acquired.

Dr. Pan, the nephrology resident, stopped by and told us that because Dad was not very acidosic and didn’t seem to have much extra fluid, they would not dialyze him today. He said that the nephrology team would assess Dad on a daily basis to determine whether to dialyze.

Dr. White stopped by during rounds at 8:00 A.M. He agreed that we’d seen a slight improvement in Dad since yesterday–probably due to the dialysis. He was able to feel the pulse in Dad’s feet with his hand, and he said that Dad’s feet looked better than they did yesterday. I knew that I shouldn’t have been so concerned about his toes when his life was at stake, but I was relieved that the pulse in Dad’s feet was getting stronger as they weaned him off of the vasopressors.

Now that Dad was back on the ventilator, he couldn’t talk. I got some wild idea yesterday that I had to give Dad a chance to communicate with us if he was going to die. Andrea said that she would contact the respiratory therapist to see if it would be possible to enable him to talk. The respiratory therapist contacted Svenja, the Trach Goddess of Scott & White. We hadn’t seen her since June, when she first changed Dad’s trach. When she heard about Dad’s condition and our desire to communicate with him, she agreed to give it a try. Unfortunately, all of her efforts failed to work, and we probably sapped some of Dad’s strength. The exercise woke him up for a couple of minutes, but he fell asleep almost immediately when Svenja reinflated his trach collar.

When Mom and I returned from a lunch break, we found that Dad was still asleep and impossible to rouse. Most of his vitals were still good, but Andrea told us that his platelet count had dropped, and he needed a platelet transfusion. We sat in the room with Dad for a few more hours and finally went home for dinner. It was difficult to stay in the room with him in his current condition, but it felt worse to leave him. Although his vitals were stable, his condition was still grave, and the failed attempt to communicate with him had wilted my already sagging spirits.

We returned to the hospital at 7:00 P.M., in time to meet Tyler, the night nurse. Mom and I liked him immediately, and he seemed intent on weaning Dad off of the vasopressors. While talking with the nurse, the respiratory therapist, also named Tyler, attended to Dad’s trach, the ventilator, and Dad’s oral care.

Before we left for the night, Tyler put some lotion and booties on Dad’s feet to help with his peeling and cold feet. Tyler told us that he would be working for four nights that week, and we really hoped that he would be assigned to Dad. When Mom and I left for home at 8:30 P.M., we felt a small sense of optimism that Dad would have a good night, and maybe we would too.

And the nightmare begins again

Published on September 27, 2016 by mellowdee553 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Things were going great, until they weren’t.

Published on September 20, 2016 by mellowdee55Leave a comment

July 16. Dad was seen by the infectious diseases specialist, who (like Dr. Smith) wanted to take Dad off of the IV antibiotic. The lower strength of doxycycline, compared with the IV antibiotic he was taking, should help improve his kidney function. Antibiotics are tough on your system and can affect kidney function. Not surprisingly, when the doctor visited with him, Dad told him that he wanted to go home.

As promised yesterday, Adan stopped by with some thickened chicken soup for Dad to try. Dad wasn’t wild about the consistency of the soup, but Adan was encouraged that Dad was swallowing the soup without aspirating it.

flower1 Jennifer from PT arrived and Dad was ready to exercise. He immediately asked about her plans for him, and Mom wanted to know what he could do over the weekend. She didn’t want him “just lying in bed.” Although my parents were resigned to the fact that my father had to remain hospitalized until August 26, they didn’t want to stay there one day longer than absolutely necessary. Jennifer showed them a variety of exercises that Dad could do, and she encouraged him to sit in the chair at least twice a day over the weekend. Although he started out pretty unsteady, Dad was able to walk with assistance for about 250 feet. Jennifer was encouraged about how his mobility kept improving during their sessions.

July 17. The bad news was that it was Friday and Dad was scheduled for dialysis. The good news was that he’d have a two-day reprieve when today’s session was finished. Because it was dialysis day, he also had blood drawn. His lab results were very good. His WBC count was 6.5, his hemoglobin was 9.4, and his creatinine was 3.61. The hemoglobin and creatinine numbers weren’t good for the average person, but they were an improvement for him. They removed 2,877 ml of fluid, which was a significant increase over Wednesday. Although he was tired, he was still able to participate in some activities later that day.

Unfortunately, all of his physical therapy led Dad to believe that he could get out of bed by himself. He was reminded again by the nurse that if he needed anything, he should use the call button to request assistance.

Adan stopped by with some thickened tomato soup for Dad. It tasted as dreadful as it sounded, but he was able to swallow it. Adan was now cautiously optimistic about Dad’s prognosis. Mom and I were thinking ahead to Stan’s birthday the following week, and she asked Adan if he thought that Dad could eat a Jell-O cake (Don’t knock it until you’ve tried it.). Unfortunately, he said that the Jell-O was very slick and would be difficult to swallow. I was bummed. I had really hoped that we could have some sort of cake next week.

July 18. It was Saturday and the first weekend since May 15 that I stayed at home in Houston. When Mom arrived at the CCH, Dad was awake, but he said that he wasn’t feeling very well. He slept for another hour and felt better when he woke. Mom noticed that his feet stuck out of the bed when he slept. At 6’1”, Dad was taller that the hospital beds were long. According to the nurses, the beds were designed for 5’10” adults. Although she had asked before, Mom asked the nurse if she could find a bed extension for Dad’s bed. After searching for quite some time, she finally discovered an extension in the room across the hall, which had been occupied by a short woman. The extra foot enabled Dad to sleep with his feet under the covers.

sunflower The nurse started a new IV, but they had no plans to remove Dad’s PICC line until Sunday or Monday. I had sent Dad more flowers, and he surprised me by calling me at home to thank me for them. Although he was disappointed about how weak he had become and his extended stay, his attitude seemed to be getting more positive, and he was working hard to gain back the strength that he’d need to leave.

July 19. At 3:15 A.M., the night nurse woke Dad so that she could reposition him in the bed. When he objected, she reminded him about the importance of frequent position changes to prevent ulcers and to promote healing. He informed her that he didn’t need any help turning himself in bed and added that he did not want to be awakened during the night to turn. As you might expect, she asked him to show her, and he was able to fully turn on each side. She reinforced the importance of him turning, and then she left.

Rebecca, the day nurse, had a similar exchange with Dad when she reminded him that he had to turn himself in the bed every two hours.

When Dr. Ciceri saw Dad during morning rounds, he found Dad to be in good spirits and very conversant. If it wasn’t for the danged kidneys, you’d think that he’d be about ready to go home. It was now 75 days since Dad’s surgery. It had also been two days since dialysis, and Dad was feeling pretty good. With Mom’s help, he did lots of bed exercises and walked all over the CCH in his wheelchair.

July 20. It was Monday again, which meant a new doctor and more dialysis. Unfortunately, Dr. Douglas Anderson, our “favorite” doctor, was back. Before his 7:00 A.M. dialysis appointment, Dad was reminded once again that he had to use the call button and could not get out of bed without assistance. Dad’s pre-dialysis lab results were mixed. His WBC count was down to 5.4 but his creatinine level was up to 4.73, higher than they had been in weeks. Dad’s pre-dialysis weight was taken from the scale that is built into the bed. The down side of that nifty bed extension was that it added to the weight of the bed. According to the bed scale, which wasn’t recalibrated for the extra weight of the extension, he had gained 4.6 kg since Friday, which was highly unlikely. The dialysis nurse guestimated that he had gained 2.2 kg (5.5 pounds), and removed 2,872 ml.

Dad was pretty tired after dialysis—too tired to participate in swallowing trials with Adan. Adan said that he would follow up with Dad on Tuesday for a trial meal, and possibly diet advancement. That news from Adan was pretty promising, but even better than that was the news that Mom received from her neurologist. According to her latest MRI, Mom’s brain showed no signs of impairment from her stroke in May.

July 21. Dad’s day started out pretty well and he was in good spirits. Adan stopped by in the early afternoon and had Dad try eating some thickened chicken soup. He thought that Dad had made good progress in the past few days and would bring Dad a tray on Wednesday or Thursday.

Shortly after Adan left, Jennifer arrived for his physical therapy session. During his sit-stands on the edge of the bed, his heart rate increased to 140. Jennifer was a little alarmed, but the nurse told her that increases like this weren’t uncommon for Dad. Because he was a little dizzy and off balance, he required some assistance when he walked. His balance improved the more that he walked, but he required at least minimal assistance during the session. As she had done on previous visits, Jennifer ended the session by having Dad sit in the chair. All in all, Jennifer felt that he was progressing toward his goals.

A couple of hours after Jennifer left, Christopher, the occupational therapist, arrived to formulate goals with my parents. The occupational therapist had been monitoring Dad’s progress with physical therapy and felt that Dad was ready for OT intervention.

July 22. It was hump day for most people but dialysis day for Dad. It was also my husband’s birthday. Although Stan’s day would be better than Dad’s, he was scheduled to work during the day and then all night. As compensation for working 20 hours, Stan would get the day off on Friday, enabling us to get an early start to our weekend in Temple where we would celebrate Stan’s birthday with my parents.

When Dad arrived at the dialysis department, the dialysis nurse noticed that his lung capacity was somewhat diminished with crackles to the bases, although she said that his cough was productive. His WBC count was sitting at 5.6, so I wasn’t too worried about infection, although I wondered if the doxycycline was addressing the infection in his lung. His creatinine level was down slightly, but not nearly as low as it had been last week.

At 3:05 P.M., I was at the office in Houston and attending a meeting with Patrick and Michele, a couple of my coworkers. Whenever I was in Houston, I kept my mobile phone close by in case my mother happened to call. To date, all of my phone conversations with her were initiated by me. At this moment, my phone rang and my mother’s name appeared on the caller ID. I couldn’t take the call, but noticed that she left a message. I was able to end the meeting a little early, and then listened to the following message: “Melody, it’s Mom. I’m at the hospital with Dad and he’s not doing too well. He had a bad coughing spell during dialysis and they’re trying to bring his blood pressure down, but he’s got the shakes and delusions and all kinds of stuff. Call me on my cell, because I’m not going to leave him. Talk to you later. Bye-bye.”

Dang.

Moving day!

Published on August 23, 2016August 29, 2016 by mellowdee551 Comment

June 25, 2015. The big day had finally arrived. Because the move was scheduled for 11:00 A.M., I decided to work for a few hours and then get to the hospital in time for Dad’s transfer. Mom arrived at the hospital at 8:00 A.M and was pleased to see that Dad was out of bed and in the chair. We were pleased when the nurse told her that he had been in the chair for two hours. Time in the chair helped his lungs and his endurance.

The doctor canceled the morning blood draw, but according to Dr. Velazco, the last blood draw showed that Dad’s hemoglobin level was up to 8.3, which meant that he wouldn’t need another unit of blood today. The doctor said that Dad appeared to be well enough to transfer to the Scott & White Continuing Care Hospital (CCH).

hurryUp I was running late and didn’t arrive until 11:00 A.M., so I was surprised to see that Dad was in bed and sleeping, because I was expecting his transfer to be underway. Shortly thereafter, Laura, the case manager, called to say that Dad’s move was rescheduled for 1:00 P.M. I still needed to wrap up some things at work, so I left at noon, and Mom stayed behind.

I returned to the hospital at 1:45 P.M. Dad still hadn’t transferred. I helped Mom remove the last of Dad’s personal items from his room. The EMS team arrived at 2:05 P.M and started prepping Dad for his move. They were a real personable crew, and with all the positive energy in the room, it felt like we were moving toward better times. We were eager to move on, but truth be told, after 53 days here, I was going to miss some of the nurses and therapists.

Mom and I waited until they wheeled Dad out before we left. Then, instead of following the ambulance to the CCH, I followed Mom to a local auto body shop. A few days earlier, Mom had hit the passenger-side mirror of her beloved Chrysler LeBaron convertible when backing out of the garage. In addition to the added stress of having to deal with the car damage, she agonizes over every scratch and ding. You can’t buy body parts for this car, so the shop guys were going to scavenge for a replacement mirror. They removed the injured mirror from Mom’s car, and we headed for the CCH.

When we arrived at the CCH, the mood of the facility seemed different, calmer than that at Memorial. For starters, the parking lot was much smaller, every space was relatively close to the front door, and you didn’t need to engage in hand-to-hand combat to get a parking spot.

We found Dad in his room and a nurse and an aide were updating his chart and reviewing his recent medical history. We hadn’t been there very long when we saw Dr. White, one of the doctors from Memorial. He had been Mom’s doctor for a couple of days and then Dad’s doctor a couple of different times at Memorial. We hadn’t realized that he was part of the CCH doctor rotation. He told us that this was his final rotation at the CCH.

The primary rationale for transferring a patient from ICU to a continuing-care facility has to do with the environment—specifically, the light. We were told that that Dad needed exposure to more daylight and to a distinct daytime and nighttime. We hadn’t been at the CCH very long before I started wondering whether anyone from Memorial had ever set foot inside the CCH. Its odd-shaped rooms each had only one small window placed so awkwardly that I couldn’t see how the patient got any advantage from the much-vaunted changes in light.

Although the doctors at Memorial frequently referred to the CCH as “rehab,” the CCH personnel made it clear that they were not a rehabilitation facility, although they did provide occupational, physical, and speech therapy. After we arrived, we were told that rehab for Dad would come after he left the CCH—perhaps at a skilled nursing facility.

I questioned Dr. White about Dad’s plan of care while at the CCH. He said that he wanted to observe Dad for a couple of days before determining a plan.

June 26. Dad’s first full day at the CCH. It was also Friday, which meant that he had a date with dialysis. Because he received dialysis in his room at Memorial, we were always with him during these sessions. Mom assumed that she would also accompany him to dialysis at the CCH. The dialysis personnel let her enter, but they instructed her to don protective clothing. She soon realized that she was the only visitor. Dad slept most of the time that she was there, so she decided that going forward, she would not sit with him during dialysis. She would use this time to run errands and work around the house. She would ensure that she was in his room when he returned from dialysis.

After lunch I accompanied Mom back to the CCH. Shortly after I arrived, I asked the nurse for his lab results. She quickly told me that she could not release that information to the family, and I just as quickly told her that either I or my mother would be provided this information every day that they drew blood. Now that he was at the CCH, they drew blood at the start of his dialysis sessions. Our requests for his medical information weren’t questioned again.

Dad’s hemoglobin was up to 8.4 and his WBC count was down to 10.4. These lab results were good, but the great news came later that day when we learned that the wound care personnel would trim Dad’s finger and toe nails. It doesn’t seem like a big deal, but he had been hospitalized for 54 days, so nail trimming was huge. If only we could score a haircut. Dad was determined that he would not get a haircut until he could go see his barber, but he was starting to look a little shaggy.

Sometime during the day, Dad lost his left hearing aid. This wasn’t the first time that he lost a hearing aid, and it wouldn’t be the last time.

Being in a new facility meant that we had a whole new group of care providers to meet. We had developed so many positive and cooperative relationships at Memorial and looked forward to getting to know and trust the providers here. One that I would come to like and appreciate was Angela, a respiratory therapist. Dad wasn’t too wild about any of the respiratory therapists at either location, but some he really detested. Angela was a gentle touch, even when she had to administer deep breathing treatments or deep suctioning.

Mom and I visited until 4:00 P.M. and then left to buy some canning supplies. Those cucumbers weren’t going to become pickles by themselves.

June 27. Mom and I arrived around 8:45 A.M. It had rained quite a bit earlier in the morning, which was good news for pulling weeds in the vegetable garden. The first great news that we received was that the night nurse had found Dad’s hearing aid. It was Saturday, and not a dialysis day, so no blood was drawn for labs. The nurse mentioned that his electrolytes were down yesterday after dialysis but were better this morning.

Dr. White stopped by shortly before noon and said that he thought that Dad would probably move to the second floor in a week or two. The CCH is a two-story facility, and the sicker patients reside on the first floor. He also said that if Dad kept improving, they’d probably reduce the frequency of his lab work to twice a week. The doctor also said that occupational and physical therapy would start during the coming week. He didn’t mention speech therapy, and I hoped that it would be included, too. I didn’t learn until much later that the speech therapist at the CCH had already received his consult request and had reviewed Dad’s swallow therapy history from Memorial.

Dad had a bit of a strenuous afternoon. He coughed a lot, and each coughing spell seemed to leave him exhausted.

That night after dinner, Mom and I headed to the garden. I picked the remaining cucumbers and then pulled up the cucumber plants—as directed by my father—to make room for the cantaloupe vines. Mom and I then picked about six dozen tomatoes. This was the summer of the tomato sandwich and the bread & butter pickles. We just hoped that Dad would come home in time to enjoy the bounty of his garden.

A departure delayed

Published on August 16, 2016 by mellowdee551 Comment

Monday, June 22, 2015. It was day 48 at Scott & White Memorial (Memorial). When Mom and I arrived, Dad’s WBC count was 18,600, a 7,200 point spike from the previous day. Dad’s hemoglobin had dropped below 7.0 to 6.6, which meant that he needed another unit of blood. These lab results were alarming. In the last few days, doctor visits had become less frequent and occurred later in the day. Suddenly, the doctor who had recently been so difficult to find was now a constant presence. To me and Mom, the staff had seemed frantic to get Dad to a level that would permit them to transfer him to the Scott & White Continuing Care Hospital (CCH). Although today was supposed to be transfer day, it was obvious to everyone that his worsening condition would delay his transfer.

Dr. Velazco decided that he would perform another bronchoscopy with bronchoalveolar lavage (bronch) on Dad’s right lung to see if he had developed another strain of pneumonia. While we were waiting for the procedure to begin, Barbara, one of the hospital chaplains, spoke with us outside the room. During the past 47 days at the hospital, we had become friends with her, and she could tell when we were tense. At this point, even the housekeeping personnel could sense our stress level.

Although the doctor said that Dad’s lung had appeared normal, he mentioned that he saw thick yellow secretions, which wasn’t surprising to me, given his increased WBC count. Unfortunately, the secretions that he removed required 24 hours to grow in the lab. While we waited for the results, they started Dad on a broad-spectrum antibiotic. I could have sworn that this was the same thing that we heard the last time they performed a bronch, which miffed me a little. Although I’m sure that there are valid reasons why you’d change antibiotics, something about their approach wasn’t working. I was also a little annoyed that when I questioned the staff about my father’s changing vitals a couple of days earlier, I was informed that unlike me, “they” look at the whole person and not just the numbers. I’m not a medical professional, but it seemed that his whole person wasn’t doing too well at the moment.

Because it was Monday, Dad was scheduled for a four-hour dialysis session in addition to the bronch procedure. After dialysis started, Mom and I went home for lunch, and I worked for another hour before heading back to the hospital. Later that afternoon, two hematologists stopped by Dad’s room and said that they would be working with Dad’s team of doctors.

The respiratory therapists had been administering a deep respiratory treatment that smelled like sulfur. Happily for everyone, those treatments ended today. Dad’s central line had become a little sluggish, and the nurse had to inject something like a tPA to clear it.

Before Mom and I left for the day, Dr. Sai, Dad’s heart surgeon, stopped by for one of his obligatory 30-second visits to say hello, and to assure us that they were looking into Dad’s WBC count situation. Because he was Dad’s admitting physician, he was overseeing Dad’s case, but he wasn’t adding much to our comfort level or the level of confidence in the doctors.

June 23. I had to stay at home to attend some meetings via phone, so Mom left for the hospital at 8:00 A.M. without me. Today was another tough day, but some of Dad’s vitals showed some signs of improvement. His WBC count had dropped to 12,900. It was still high, but considerably lower than yesterday. Unfortunately, his hemoglobin level was still low, and he needed another unit of blood. Daytime Natalie was back, which generally reduced our anxiety levels. There was nothing quite as wonderful as having a great nurse assigned to your loved one.

Dr. Velazco was adamant that Dad get out of bed and into the chair. He insisted that movement and exercise were important for Dad’s recovery. Dad was very lethargic and sleepy, and Holly, the speech therapist, was not able to rouse him for therapy. It killed me when he couldn’t receive speech therapy. He simply had to be able to swallow again without aspirating.

The doctor mentioned again that Dad’s worsening anemia was preventing him from transferring to the CCH. The hematologists attributed Dad’s anemia to bone marrow suppression due to his infection and the antibiotics (which he took because of the infection).

The physical therapist visited Dad and assessed his progress. They had missed several sessions because of various procedures and dialysis. Dad was still pretty weak and on BiPAP, so they worked through some bed exercises.

Robert, one of the PAs, stopped by and told me that Dad was moving to the CCH on Thursday—two days from now. I’d believe it when I saw it.

Natalie, Kelli the charge nurse, and a male nurse finally moved Dad to a chair at 4:30 P.M. Between his attachments and his weakened condition, moving him from the bed to the chair was somewhat of an ordeal. He wasn’t in the chair long before his oxygen saturation dropped into the 80s. The respiratory therapist suctioned him, but his levels did not return to the upper 90s until she removed Dad’s speaking valve.

I left at 4:45 P.M. and did not return that day. Instead, I weeded my parents’ garden and picked tomatoes and cucumbers. Before my parents planted their garden, my father had mixed cotton seed into the soil. The way the garden exploded with vegetables and melons made me suspect that he had also planted radioactive seeds.

Mom returned to the hospital after dinner to check on Dad and say good night. When she arrived, he was back in bed, but his trach tube was open and his neck was covered with secretions. It took her a while to track down a nurse who would clean him up and replace his speaking valve. He was placed back on BiPAP support overnight.

June 24. Mom arrived at 8:00 A.M. and found that Dad was still on BiPAP. He was very drowsy, but he could be roused. It was Wednesday, which meant that Dad required dialysis, but they ordered an eight-hour session instead of a four-hour session, although they didn’t tell us why. Dad’s WBC count had dipped to 11,100. It wasn’t where it had been just a few days earlier, but we were seeing a definite improvement in his condition.

Dad was bronched again this morning. According to what the doctor said, they wanted to look for, and possibly remove, more secretions from his lungs. I had lost track of how often they had performed this procedure. This time they inspected found thick yellow mucus in the bottom of both lobes. Once again, we would wait at least 24 hours for the lab results. The lab results from two days ago showed that he had developed pseudomonas tracheobronchitis, which occurs in patients on ventilation.

Svenja, the Trach Goddess of Scott & White, returned to change out Dad’s trach tube. The type of trach tube he had now would require weekly changeouts for as long as he required one. Dad’s hemoglobin level was holding tight at 7.0, which was the minimum level the doctors would allow before ordering another unit of blood.

The wound care team stopped by and said that the chest wound from Dad’s two surgeries was healing “beautifully.” They removed the wound vac, which meant that Dad had one fewer tube and hunk of hardware to drag around and take to the CCH.

Mike, the physical therapist stopped by and had Dad perform leg exercises in the bed. By the time that Holly from Speech Therapy stopped by, Dad was sleeping and she couldn’t rouse him. I hated that he missed another swallow therapy session with her. It probably would be Dad’s last chance to see her before his transfer.

Laura, the case manager stopped by and confirmed to Mom that tomorrow at 11:00 A.M. Dad would be discharged from Memorial and transferred to the CCH.

It had been a very busy, almost frantic day of procedures and therapies to ensure that Dad could leave Memorial tomorrow for the CCH. We left the hospital with our fingers crossed.