speech pathology – Page 2 – Tale of Two Parents

Just. Want. To. Go. Home.

Published on September 13, 2016 by mellowdee552 Comments

July 12, 2015. Stan arrived at my parents’ home at 9:00 A.M. from Houston, and Mom and I left for the CCH shortly after his arrival. Before Mom and I left the CCH for church, the respiratory therapist stopped by and replaced Dad’s speaking valve with a red cap. Oh my gosh! It was almost like having no trach tube. He breathed normally and he sounded more like his usual self. Dad’s ability to remove his own secretions with the Yaunker would determine when they could decannulate him. If Dad could not handle his secretions, the respiratory therapists would have to remove the red cap and suction him. While we were there, Dr. Smith stopped by and asked if Dad had been in the chair. I just hated knowing that our week with this doctor was about to end.

Stan visited with Dad at the CCH while Mom and I attended church, and then he stayed for another couple of hours while Dad sat in the chair. I was encouraged when Stan told me that Dad did most of the transfer from his bed to the chair, and once he was in the chair, his coughing stopped.

Later in that day, Cassie, the nurse, mentioned that Dr. Smith was considering switching Dad from intravenous to oral antibiotics. Among other things, the oral antibiotics were less harsh on the kidneys. Because Dad could not swallow pills, the oral antibiotics would be crushed and administered through his feeding tube.

For the past few weeks, Mom and I had been unable to unlock the front door with the house key. Stan had sprayed graphite into the lock and that remedy had worked for a couple of weeks, but we were now back to square one. We didn’t have the time or inclination to fix it, so we just accessed the house from other doors. The front door lock was just an example of life’s little inconveniences that didn’t seem all that important at the time.

July 13. It was Monday, which meant that a new doctor started the week-long rotation, and Dad was scheduled for another 4-5 hours of dialysis. On the positive side, Dad was gaining less weight between dialysis sessions, which meant that they would remove less fluid from his blood. Today they removed only 1,497 ml, far less than the 4,000 ml or more removed only a week or so earlier. The nephrology personnel were cautiously optimistic that his kidneys might be perking up. What they actually said was that they “would watch him closely for a possible sign of recovery.” Dad’s labs that day were a little contradictory. Although his creatinine levels had improved slightly, his WBC count had inched up. It was still well within the normal range, but this was the first uptick that we’d seen in the WBC count in a couple of weeks. Dr. Ciceri, the new doctor, mentioned that Dad seemed to be in good spirits and that he was very conversant. Perhaps I worried too much.

My parents live down the street from Bob Probe, an orthopedic surgeon with Baylor Scott & White, who was now chief of staff for Scott & White Clinic. This morning, while Dad was in dialysis, Mom and I visited with Dr. Probe and expressed some of our concerns about recent events. In particular, we wanted to tell him about my mother’s experiences at the hospital—specifically, her admittance to Scott & White Hospital as Trauma Patient Ohio. We also told him about my difficulty calling 911. Although he had no authority over the 911 system, he had many contacts who he said he would contact. We also shared some of the challenges that we had had with Dad’s care. In our experience with the hospital, we had learned that it was the patients’ responsibility to understand what was happening. We had seen firsthand that the doctors didn’t ensure that the patient could hear or understand what was being said. You’d have to pity the poor person who was admitted without a support system or advocate. As someone who is concerned about new-user experiences, I told him that to navigate the system, new patients and their families needed more information about resources, and perhaps the case managers could come around more often. From what Mom and I could surmise, the hospital personnel who filled this void were the chaplains, and some did it better than others. If the chaplains were the designated go-to resources, it would have been nice to know that on May 6. Dr. Probe said that he appreciated the perspective and the feedback. He took a lot of notes during our meeting, and Mom and I left the meeting under the impression that we would hear back from the good doctor. Spoiler alert: It’s been almost 14 months and we still haven’t heard from him, but hope springs eternal. He might have bigger fish to fry. Since our meeting, Dr. Probe was promoted to Chief Medical Officer of the Baylor Scott & White system.

Following our visit with Dr. Probe, Mom and I went home for lunch. On my way back to Houston, I stopped by the hospital to say good-bye to Dad. He was dozing when I arrived, but woke easily and was pretty talkative. He looked pretty alert, and seemed to be feeling better than he had on most dialysis days. Mom arrived shortly before I left at 2:00 P.M. Soon after I left, Dad said that he was tired and had Mom leave for the day. When he was tired, he could fall asleep in midsentence. Later that evening, Mom tended to the garden and also gave it a good soaking. After all the rain just two months earlier, we were now suffering from a drought. Where rain was concerned, it was either feast or famine in central Texas.

July 14. Dad was alert and in good spirits when Dr. Ciceri visited him during morning rounds. Dad’s vitals were good, and it seemed like it was a perfect day to conduct the MBSS. The swallow study must be administered in the radiology department at Scott & White Memorial. Dad was ferried to the hospital in an ambulance and the test was administered by Holly, his speech therapist during his stay at Memorial. Unfortunately, the test that we had yearned for yielded some disappointing results. In short, he was diagnosed as a high risk for aspiration. They tested him with thin liquids, nectar and honey-thickened liquids, puree, and pudding. Even when swallowing with a chin tuck, he was not successfully swallowing anything but the pudding. Fortunately, Adan planned to continue working with him. The prospect of Dad not being able to eat again was unthinkable.

Dad was pretty tired by the time he returned from Memorial to his room at the CCH. Shortly after he arrived, Jennifer, the physical therapist, arrived for his session. He told her that he felt as though he had already been moving around all morning. Physical therapists tend to ignore such protests from patients, and she proceeded with therapy. Although Dad had some difficulty standing from a chair and the side of the bed, he was able to complete all the repetitions of his exercises and walked a few steps. He did much better when he “walked” in the wheelchair. When she was finished with their session, Jennifer left him in the chair, where he stayed for an hour. Mom was encouraged by all the therapy that he was receiving.

Mom stayed until 5:45 P.M. and was still there when our church friends, Kris and Sue, stopped by after work. They had stopped by once before, but didn’t know the password. I don’t remember ever being told about a password, and unless you visited after 8:00 P.M., the doors opened automatically. Sometimes this place was just weird.

Today seemed like a pretty good day for Dad. I would have felt better about it I hadn’t been so worried about his white blood cell count.

home July 15. During dialysis, Dad told the nephrologist that he wanted to go home. The doctor told him that to be declared dialysis dependent (with End Stage Renal Disease), he had to be hospitalized and on dialysis for a total of 12 weeks. Although Mom and I had heard this news a few days ago, it was new news for Dad and prompted him to start asking questions about billing. The doctor contacted Marty Edens, the social worker, who dropped by to answer his questions. Marty couldn’t answer his specific billing questions, but she was familiar with Medicare and some of Dad’s situation. Dad told Marty that he “can’t imagine being here for six more weeks.” He repeatedly told her that he “made a wrong decision two months ago that put him where he was now.” I was glad that I missed this heartbreaking conversation and the follow-up discussion that Marty had with my parents later that day. My mother then requested a plan for his discharge. Marty told them that she could not give them a time frame regarding recovery, other than that if he continued to need dialysis, he would remain at the CCH until at least August 26, or until the doctors said he didn’t need dialysis, or they declared him to be dialysis dependent.

My exasperated parents then asked her when Adan would be able to come by. They both found some comfort and sense of progress in therapy sessions, especially speech therapy sessions with Adan. Adan stop by, had Dad eat some ice chips, and said that he would stop by tomorrow with some thickened soup for Dad to try.

Jennifer then arrived for their physical therapy session, but Dad was too tired after dialysis to exercise. Before she left, Jennifer said that Dad was now ready for sessions with occupational therapy. They had withheld occupational therapy until he was a little stronger and no longer dependent on oxygen. The occupational therapist judged his prognosis to be fair, based on what he had read in Dad’s chart. His prognosis for just about everything was fair. I was getting tired of this “F” word.

Although Dad’s lab work and his vitals were holding tight, Dr. Ciceri thought that Dad might be somewhat confused, which can be a side-effect of prolonged hospitalization. On a more positive note, during Dad’s dialysis session, only 1,194 ml of fluid was removed, which was considerably less than earlier amounts and left him less fatigued. With Dad’s extra energy, he continually told nurses, doctors, and other providers that he “just wanted to go home.” Up until 71 days ago, my parents had been the poster adults for healthy seniors. They were active, engaged, and in control of their lives. Their current situation left them frustrated and just barely able to tolerate their current situation.

What a difference one person can make

Published on September 6, 2016September 6, 2016 by mellowdee551 Comment

July 5. On the way to church, Mom and I stopped by the hospital to visit with Dad and to try to get a moment of the good doctor’s time. Dr. Anderson didn’t seem to be a fan of the patients’ families, but we had told the nurse yesterday that we wanted to talk with him. Before the doctor graced us with his presence, Mom and I had a discussion with Dad about his inactivity. He seemed content to stay in bed, and we were just as determined to get him out of it.

When Dr. Anderson arrived, he remained in the threshold with his arms crossed high on his chest. Following the introductions, I asked him about Dad’s prognosis for getting a red cap on his trach. He said that they were monitoring Dad’s secretions and would attempt it as soon as possible. The conversation started to deteriorate when I asked him about Dad getting out of the bed and into the chair. He said that Dad was too weak to sit in the chair. When I challenged that proclamation, saying that all the doctors at Memorial wanted Dad in the chair every day, he still wouldn’t budge. He basically said that the Memorial doctors were wrong. When I asked about the frequency of Dad’s swallow therapy, he rolled his eyes and said that the (lemon swab) therapy that Dad had received at Memorial wouldn’t do any good. To make matters worse, Dad was satisfied that he didn’t have to get out of bed. The first word that popped into my head was warehousing, and Mom and I were incensed. They were not going to warehouse Dad.

While Mom and I were at church, many former and current health-care professionals asked us about Dad’s condition, and they all asked if he had been sitting in the chair. When we relayed our earlier conversation with Dr. Anderson, one of the parishioners encouraged us to put our concerns in writing and meet with the nurse manager and request a care plan for Dad. During the morning service, Pastor Don mentioned that Dad was one of his blessings. Don went on to say that Dad had been having a tough time, but he blessed Don every time Don visited with him. On the way back to my parents’ home after church, I stopped by the hospital to say goodbye to Dad before I went home to Houston. Before I left, I collected some information for Mom about the CCH from the CCH website. I wanted to ensure that she was adequately prepared for her meeting with the nurse manager. I also ensured that she was armed with an excerpt from the mission statement on their website.

cchPledge

July 6. Shortly after Mom arrived at the CCH, the case manager informed Mom that Dad would need to remain at the CCH until he had received dialysis for at least 90 days. Evidently, Medicare won’t consider a person dialysis-dependent until he has received at least 90 days of dialysis while hospitalized. What that really means is that they won’t pay for it. It also meant he couldn’t leave this place until August 26! It was difficult to believe that this policy was cost efficient, but who am I to question the U.S. government?

It was the first day of the doctor rotation, and a breath of fresh air, known as Dr. Randall Smith, blew into Dad’s room after dialysis. In addition to insisting that Dad get out of bed and into the chair, he actually spoke to Mom. A few people at the CCH would become important in our lives. Now that Dr. Smith had arrived, we had met three of them: Adan, Angela, and Dr. Smith.

Later that morning, Mom was able to see April Jones, the nurse manager. We don’t know if seeing her or having a different doctor made the difference in Dad’s care that week, but Mom’s mood improved significantly after their visit. We still can’t tell you what a care plan looks like, because we never saw one. Evidently, care plans are prepared every week and are part of the patient’s chart. Patients and their families are apprised on a need-to-know basis, or when something happens. We learned that our best bet was to form relationships with the therapists.

Adan, the speech therapist, visited with Dad and administered a bedside swallow test with water, ice chips, and lemon swabs. He also felt Dad’s neck muscles, and believed that Dad was swallowing. Instead of the original plan of one time a week, Adan would now try to meet with Dad three times each week. Although Dad’s progress was slow, Adan thought that he was progressing toward his goals.

Dad had dialysis today, but they removed only 2.8 liters, which was less than what they had been removing. His WBC count was inching down and was now at 8.5—another good sign of progress.

July 7. Dad started the day somewhat agitated and confused, but his mental status improved as the day progressed. When Jennifer from physical therapy arrived, Dad told her that he was “as weak as a kitten.” Following their session, Jennifer said that Dad’s strength was improving faster than he appeared to realize. She thought that he was making good progress with his transfers and standing, and that his activity tolerance had also improved. Could it be that all that physical activity improved his mood and mentation?

At the end of the physical therapy session, Jennifer left him in the chair, where he remained for an hour. Although Mom’s mood improved with Dad’s increased physical activity, she became a bit agitated with the “junk and bugs” on the floor. This wasn’t a new complaint. Conditions were pretty similar at Memorial, too.

Adan stopped by today with some thickened cranberry juice for Dad to swallow. Adan was going to see if he could get a MBSS test at Memorial next week. If Dad could pass the test, then he could start eating again.

July 8. It was dialysis day again. The nephrologist thought that Dad looked euvolemic—or normal—so they would not need to remove as much fluid. However, because he became hypotensive during dialysis, they had to stop fluid removal. In the end, they removed less than 2 liters.

We also received mixed news about his lab results. Although his WBC count was down to 7.7 and his hemoglobin was staying put at 8.5, his creatinine levels still exceeded 4.0—significantly higher than normal range of 0.6—1.2.

One of the daily routines occurred between the nurse (every nurse) and my Dad. Every day, multiple times each day, my father complained about being repositioned in the bed. This interruption occurred every two hours that he remained in bed (another good reason to get in the chair). Every time that my father complained, the nurse recited the importance of turns to prevent skin breakdown. He could be a challenge sometimes.

July 9. Dr. Smith said that in terms of his respiratory status, Dad was doing well. Unfortunately, he still had too many secretions to have his trach tube red-capped. He also said that, although it was still elevated, Dad’s creatinine levels seemed to be dropping. He wasn’t going to make any predictions but thought that Dad might be having some recovery of his kidney function. Wouldn’t that be great!

Jennifer from physical therapy was pretty optimistic, too. She noted that Dad was able to pull himself up and reposition himself in bed with little or no assistance. Mom was pretty excited about Dad’s physical therapy session. He walked in the hall that day with the assistance of a walker. Following therapy, he sat in the chair again for an hour. Dad’s swallow therapy was progressing too, albeit much slower.

Following an afternoon of flying endorphins from all of Dad’s physical activity, their friend, Marilyn, stopped by for a short visit. When Mom got home that evening, she picked some cantaloupes and tomatoes from my parents’ killer garden. Dad had missed the garden-fresh cucumbers; maybe he’d be home in time to enjoy fresh-picked melons from their garden.

July 10. It was Friday, and dialysis day. The lab results were encouraging. All of his levels had improved since Wednesday. His hemoglobin was up, his WBC count was down to 7.4, and his creatinine finally fell below 4.0. I arrived from Houston shortly after 3:30 P.M. After a week of good news, I was eager to see him again. Unfortunately, he was still pretty tired and disoriented from his dialysis session. At 4:15 P.M., he asked us to leave for the day.

Mom and I decided to take advantage of our free time and worked in the garden. We picked about three dozen figs; I picked 13 tomatoes, five cantaloupes, and one cucumber. I thought that I had pulled up all the cucumber plants, but one escaped me and the cucumber was about the size of a melon.

July 11. Mom and I arrived at the CCH at 9:25 A.M., in time to see a whirlwind of activity around Dad. Evidently, his feeding tube was clogged again and the nurse’s aide was trying to clear it. When Dr. Smith arrived, the small room seemed filled to capacity. In addition to some of the typical daily goals, like the requirement to get out of bed and into the chair, he announced that he wanted to see if they could remove Dad’s central line. Central lines and dialysis catheters are like infection highways with exits into your heart and brain, among other vital organs. The doctor thought that Dad was improving to the point that he could have the central line removed and replaced with an IV for the administration of his meds. I had some mixed feelings about this. IVs don’t stay in for long periods, which meant more sticks, and he was a poor stickee. I inhaled, but kept my thoughts to myself. I didn’t know what Dad thought, but I inherited his challenging veins and wondered if we shared similar anxious thoughts. The tech was able to hit a vein on the first try, which was practically a miracle.

Although Dad’s creatinine levels were improving, his kidneys weren’t giving up nearly enough fluid. In a two-day period, they needed to release about 2 liters. What they didn’t give up was pulled off during dialysis. If only you could give your kidneys a pep talk.

Dr. Smith thought that Dad was still a few days away from having his trach tube red-capped. Dad still had some infection in his lungs and he was still coughing up a lot of secretions. Later in the day, the respiratory therapist suggested that Dad might get his red cap on Monday or Tuesday.

When Mom and I returned after lunch, Dad had a new feeding tube, but it was somewhat uncomfortable. The tube has a very small diameter and is very flexible. It contains a thin wire to aid insertion and which appears on x-rays, which in turn are used to ensure that the tube is properly positioned. After the doctor finally had had the opportunity to review the x-ray of the positioning of Dad’s new tube, the nurse removed the wire, which improved the comfort level. Then the nurse restarted the Nepro tube feed.

As sick as Dad still was, the little things seemed to really annoy him, which I guess I should have taken as a good sign. He absolutely detested the oral care treatments that he received several times during the day. He thought that the mouthwash was the vilest thing he had ever tasted and asked the respiratory therapist, “which gas station they visited to find that stuff.” Considering that he used the original Listerine at home that was really saying something about the taste. His oral care was important, so I didn’t respond to his complaints. I was more concerned when he complained a couple of times that his IV site was painful.

Before Mom and I left for the day, Dad told Mom to be sure to give the neighbors some of our cantaloupes. Mom said that she had planned to give them away and would start with our neighbors to the north after we got home.

Mom was really struggling from the over-cooled building and had me stop on the way home for throat lozenges. We also picked up a birthday card for one of my cousins. My Dad had been mailing birthday cards to his nieces, nephews, and their children. As the last of his generation, he wanted to maintain the connection with the younger generation of Lockes. Mom and I hoped that he’d be home in time to sign and mail the October birthday cards.

Our first full week at the CCH

Published on August 30, 2016 by mellowdee55Leave a comment

June 28, 2015. Mom and I arrived at the Scott &White Continuing Care Hospital (CCH) at 9:05 A.M. Dad was still sleeping. We woke him and had Rebecca, the nurse, replace his speaking valve. As soon as he could talk, Dad started complaining about being awakened during the night for breathing treatments. When Dr. White stopped by, Dad complained again about being awakened, and Dr. White changed Dad’s orders so that he would not be awakened during the night for breathing treatments unless absolutely necessary. Today is Dr. White’s last day here for a month or so. Although we liked him, we hoped that we wouldn’t be around to see him again.

Although the doctor called Dad’s coughs productive, they exhausted him. By the end of the day, he was wiped out and was dreading dialysis tomorrow.

Dr. Michael Anderson started his week-long rotation on Monday, June 29. We hadn’t heard anything about him, but he rubbed Mom the wrong way right off the bat. We had become accustomed to having doctors talk with us, and Dr. Anderson wasn’t really interested in talking with the family.

During this first full week at the CCH, Dad had his first visit from Adan, the speech therapist. The plan was to meet with Dad once a week and then have another MBSS around the middle of the month. We weren’t very pleased with the frequency of the therapy sessions because we were so anxious about his inability to swallow without aspirating. Adan did say that Dad could have ice chips after oral care.

Dad was also visited by physical and occupational therapists, but they both had to stop by a couple of times because Dad was too fatigued after dialysis to engage with them. Mom told them both that afternoons after dialysis weren’t good times for Dad to participate in physical therapy because he was too weak. When they were finally able to assess Dad, they both said that he exhibited decreased strength, exercise tolerance, and balance. Physical therapy would start immediately with visits 2-3 times per week. Occupational therapy would start after he built up some tolerance to activity. They said that his prognosis was fair.

We kept hoping that he’d advance from the speaking valve to a red cap. The red cap plugs the proximal end of the tracheostomy tube. I like to think of it as training wheels for decannulation (removal of the trach tube). The doctor said that Dad still had too many secretions for them consider red-capping him. With the way he was coughing, I couldn’t disagree.

Although the respiratory therapists stopped visiting Dad during the night, the nurses didn’t stop their visits every two hours to reposition him. He complained about it several times a day, but the repositioning was necessary to promote wound healing. The wound from his fall in May had not healed, and lying on it all day and night slowed healing.

Dad seemed to be making slow progress, but with the exception of his assessment from physical therapy, he had not been out of bed. When he was at Memorial, the doctors were practically militant about him getting out of bed and into the chair, and Mom and I could not understand why the doctor here didn’t get him out of bed.

Dad was also visited by an infectious diseases specialist. He’d been on several antibiotics during the past 55 days. His WBC count was within normal limits, but they were going to continue the current course of treatment as long as they could detect patchy areas of fluid in his lungs.

Dialysis days really drained him—literally. During dialysis, they removed a minimum of four liters of fluid during each session. We had heard that these sessions would be four hours, but his sessions during this week were five hours. His extremities didn’t seem swollen, so we lay people thought that the quantity bordered on excessive. The doctor usually described Dad’s mental state as lethargic on those days. One day after dialysis, he told my mother that he didn’t think that he’d survive this ordeal. In addition to being his patient advocates, Mom and I also had to act as his cheer-leading squad to bolster his spirits, which was often the most difficult job. As serious as Dad’s health issues were, Mom was still recovering from her own health challenges.

July 2 was a pretty good day. During morning rounds, Dad told Dr. Anderson that he felt reasonably well, but repeated that dialysis was a “tough slog.” Dad was visited by a couple of physical therapists, and he exhibited some of his real personality. He laughed and joked with them during the PT session and was able to perform all activities. They observed that his mobility had improved and he was able to stand briefly.

Dad also got a shave and a mani-pedi, courtesy of Wound Care. I don’t know who was more pleased—Mom or Dad. Following the sprucing, they also pronounced his chest scar to be “beautiful.“

I had spent most of the week at home in Houston, but my husband and I were off from work on Friday, July 3, in observance of the Fourth of July holiday. When Stan and I arrived at the hospital at 1:25 P.M., Dad was back from dialysis, but he was totally wiped out. After about 15 minutes of disoriented chit-chat, we convinced him to take a nap. His WBC count was up just slightly from Wednesday, and Dad told the doctor that he thought that his pneumonia was getting worse.

When you’re in the hospital, it’s difficult to get any real sleep. During his nap. his nurse woke him to give him a heparin shot (in the stomach). Soon thereafter, Victor, a respiratory therapist, woke Dad so that he could administer a breathing treatment.

flowers_1 One of our church friends, Sandra, stopped by and brought Dad a small flag for his room. One difference between this ICU-ish facility and the ICU at Memorial was the policy about flowers. Flowers were not allowed in ICU rooms, but they were allowed here. I had sent Dad an arrangement a few days earlier, and with the flag from Sandra in the center, it looked very festive.

Very much like Memorial, the CCH is over air conditioned. I kept a sweater in Dad’s room to ensure that I would never have to suffer from the cold. By the time we left at 4:45 P.M., Mom was beginning to suffer from laryngitis. During Dad’s stay in the hospital, she developed a cough that wouldn’t abate.

July 4. I arrived at 9:00 A.M. Dad was awake and had just had his trach tube replaced. He was really having a tough time with his congestion after the change. Dad wasn’t able to wash his face in the morning, so whenever I was in his room in the morning, I’d wipe his eyes with a cool, damp wash cloth. Dad and I visited until I left for lunch.

Mom and I returned to the hospital at 1:30 P.M. and were told that Dad still had too many secretions for the doctor to consider red-capping his trach tube. Around mid-afternoon, Michelle, the nurse, gave Dad a shot of heparin in the stomach. She also tried to fix dangling ends on his bridled feeding tube. Since he started on the feeding tube, he had pulled it out several times—often in his sleep. Recently, they had started using a bridled feeding tube, which reduces pullouts.

Later that afternoon, Earl and Marilyn, two of my parents’ good friends, stopped by for a short visit. Before he entered the hospital on May 6, Dad had proclaimed that he didn’t want any visitors while in the hospital. At the time, we thought his hospital stay wouldn’t exceed 10 days. It was now day 60, and we were relaxing his stated visitation guidelines.

After his visitors left, the respiratory therapist administered another breathing treatment. Shortly thereafter, Dad said that he was getting sleepy and suggested that Mom and I leave for the day.

Another holiday celebrated in the hospital. So far we had observed Mother’s Day, my birthday, Father’s Day, and now Independence Day in the hospital. He probably wouldn’t be released by Stan’s birthday on July 22, but it would be nice if he could eat cake by then.

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.

From the bum’s rush to a snail’s pace

Published on August 10, 2016August 12, 2016 by mellowdee55Leave a comment

Thursday, June 18. Mom and I drove in separate cars to the hospital and arrived shortly before 8:00 A.M. Dad was still sleeping and still on CPAP. Although I knew that the CPAP gave his lungs a break, it made him look as if he was breathing hard. Blair, his nurse, told me that his WBC count was down to 9,900, which put him back into normal territory. According to Dr. Sanchez, Dad had had an uneventful night, and was doing much better today.

Janie was the respiratory therapist and, for some reason, Dad just didn’t cotton to her. He especially disliked the deep suctioning and respiratory treatment that she administered that morning. That good time was followed by the always fun mouth cleansing. Although Dad hated it, mouth cleansing is very important for patients who aspirate. If you’re going to aspirate your saliva, it should be as clean as possible. At the end of this session, Janie switched Dad from CPAP to the trach collar so that he could breathe independently. Being on the trach collar also meant that we could attach the speaking valve.

Dr. Walker, the nephrologist, said that Dad would need dialysis this day, and he’d also need to visit IR to have his dialysis catheter changed out, which was one of the prerequisites for his transfer to the Scott & White Continuing Care Hospital (CCH). She was pretty sure that Dad wouldn’t transfer to the CCH today. She added that there was a pretty good chance that they would dialyze Dad tomorrow, too. The CCH dialyzed on Monday, Wednesday, and Friday. Having dialysis tomorrow would get him in sync with their schedule.

Dad still had his chest tube, and he couldn’t leave until it was removed. Dr. Sanchez assured us that he would remove Dad’s chest tube later in the day, but I would have to hear about it second hand. I had to return to Houston for a couple of days, and I left the hospital at 10:00 A.M. As I was turning onto FM 93, which intersected with my parents’ street, I saw two ambulances turn down their street. I learned later that day that their next-door neighbor had died from a gunshot wound. It was almost too much to take in.

Dad completed his second four-hour dialysis session. The doctor thought that he tolerated it “fairly well,” but these four-hour sessions left Dad drained. Dad had a little difficulty breathing during the afternoon and was returned to CPAP support. He had lost a little blood during the catheter change out, and the IR department had a difficult time stopping the bleeding. The blood loss was enough to cause his hemoglobin level to drop, which meant that he required another unit of blood.

Friday, June 19. Dad had slept well during the night on CPAP support and was moved to the trach-collar at 7:00 A.M. According the nurse, Dad’s WBC count was down to 9,000, which was terrific news. This good news was tempered by the arrival of the dialysis nurse. As the nephrologist had predicted the previous day, Dad had more dialysis during the morning. Although Dad seemed to be progressing well, the doctors decided to delay his transfer until Monday so that they could monitor his hemoglobin levels. Later that day, Sandra, one of the church’s lay leaders, stopped by to visit Dad. This visit was the first of many from this exceptional and caring woman.

June 20. Stan and I drove from Houston to Temple separately—Stan arriving before lunch. When I arrived midafternoon, I was cautiously alarmed when I learned that Dad’s WBC count had ticked up 400 points to 9,400. Although I was assured that it was not statistically significant, any increase in his WBC count made me nervous. Mom said that he had had some pretty thick secretions, and the respiratory therapist had suctioned several times before I arrived.

We returned to the hospital after dinner so that we could say good night and speak to his night nurse.

Father’s Day, June 21. Mom and I arrived at the hospital and visited with Dad before we attended church. Dad was sound asleep, but we were pleasantly surprised to see Daytime Natalie in his room when we arrived. For the past few days it seemed that we were getting a string of new nurses—people who didn’t know him or his medical history. Natalie told me that Dad had received deep suctioning earlier that morning. She also told me that his WBC count was up to 11,400, a 2,000 point increase from the previous day.

Compared to a of couple days earlier, today he seemed lethargic and very sleepy. When he finally woke up, he kept saying that a procedure had gone wrong during the night, and he demanded to see the doctor. Because there was no evidence of any procedure during the night, when Dr. Velazco arrived, he ordered another respiratory treatment, an ABG, and an X-ray for Dad. Stan arrived shortly thereafter and Mom and I went on to church. Father’s Day wasn’t starting out as well as we had hoped.

After lunch, the three of us returned to the hospital to celebrate Father’s Day. Dad opened his cards, but he didn’t want to open any gifts. It was raining when Stan left for Houston around 3:00 P.M. We didn’t like to leave our cats at home alone too long. Stan had made this trip several times since Mother’s Day, but I never relaxed until I knew that he had arrived home safely.

It hadn’t been the greatest Father’s Day. Other than hearing that Stan had made it home safe and sound, the best news of the day was that the ABG didn’t show any problems with Dad’s blood gases. Mom and I left for the evening at 5:00 P.M. feeling just a little depressed. It seemed like we kept meeting obstacles that we couldn’t overcome.

Preparing for the next phase

Published on August 3, 2016 by mellowdee55Leave a comment

June 14, 2015. Because it was Sunday, the trip to the hospital was a stop en route to church. Because we attend the late service, Mom, Chris, and I arrived a little later than usual to visit with Dad. Dad’s nurse, Erin, was new for us. We learned that she usually worked in the Medical ICU (MICU) with another favorite MICU nurse, Drew. We were developing a real respect for the nurses in the south tower.

Dad’s vitals weren’t stellar, and his WBC count was up to 14,000. Although he had breathed on his own during the night, he was now back on CPAP and seemed to be struggling to breathe, although his oxygen saturation was still at 95%. Dr. Sanchez thought that maybe Dad’s WBC count was elevated because of his strenuous breathing, or perhaps because of the infection and fluid in his lungs. I’m not a doctor, but I suspected that the infection was the culprit.

For the past 38 days, Dad had had a variety of goals having to do with strength and infection levels, and the like, but now the goals were starting to change. The hospital staff was intent on moving him out of CTICU, but his respiratory condition prevented him from moving to a different floor. Instead, he needed to move to a continuing-care hospital. However, before he could transfer, he had to reach some specific benchmarks. Among other things, he had to be able to withstand the four-hour dialysis sessions and his hemoglobin levels needed to stabilize. To reduce the risk of infection, the doctor also ordered the changeout of Dad’s central line and he removed the A-line from Dad’s right hand. Dr. Sanchez also wanted Dad to breathe on his own until 8:00 P.M. To enable that goal, my father received some pretty aggressive respiratory treatment, which was followed by him coughing up of a lot of thick secretions.

YankerFamily When we arrived at the hospital on Monday, June 15, Dad was upset because the Yankauer (yonker) wand was missing from his suction line. When you’re recovering from pneumonia, expelling secretions from your lungs is a big deal. In addition, the trach tube made it more difficult to handle the normal secretions that build up in the throat. The nurses would tell him to use the call button when he needed assistance, but when he used it, you’d hear, “Yes? What do you need?” Uh; he couldn’t speak, so when he was alone, he had to wait until someone happened by.

Dad’s WBC count had dropped to 11,900, but he was having pain around his chest wound. His hemoglobin had also dropped again, which puzzled the doctor. It seemed like he was losing blood, but they couldn’t determine a clear source. To rule out a bleeding ulcer, Dr. Sanchez ordered an esophagogastroduodenoscopy, but it didn’t identify any evidence of bleeding in his stomach. On the flip side, Dad’s oxygen saturation and MAP remained good all day.

Among the entourage of doctors, pharmacists, residents, and fellows was the case manager, Laura, and she started becoming a more visible participant. She brought us literature about the Scott & White Continuing Care Hospital (CCH) and encouraged us to stop by and visit with April, the CCH nurse manager.

During the afternoon, Svenja, the Trach Goddess of Scott & White, stopped by and downsized Dad’s tracheostomy tube. She discovered that the current tube was stuck, and she had a little difficulty removing it. Fortunately, removing the tube drew only a small amount of blood, and the new tube was inserted quickly and without any difficulty. The new tube had numerous benefits: it had a smaller outer diameter, a larger inner diameter, and could accommodate the Passy-Muir speaking valve. When Svenja attached the speaking valve to the tube, Dad’s voice was strong and clear. Dad had been unable to speak since the morning of June 8. Even the nurses were thrilled to hear him speak again.

pmSpeakingValve As much as he was pleased to talk, he was equally disappointed when the nurse removed the speaking valve. Besides his not being able to sleep with the speaking valve in place, the valve also had to be removed whenever he received any sort of oxygen support.

My cousin and I stayed at home after lunch that Monday. While Chris gardened and I worked from my parents’ office, my mother returned to the hospital; however, she came home early. She didn’t think that my father looked well and she wanted me to return to the hospital with her. When we arrived, his room was empty. Dad had been moved to IR, where they inserted another tube in his right chest. Because they took him without signed consent, we were escorted through the back hallways and elevators to the IR department so that Mom could take care of the paperwork. Dad finally returned to his room shortly before 6:00 P.M. Dr. Sanchez said that they’d probably have to tPA this chest tube, too. On the trip back to the hospital after dinner, we had stopped to admire a rainbow. It had seemed like such a hopeful sight. I guess we take our signs where we can find them.

Tuesday, June 16, was another day of mixed news. Dad was talking and his WBC count was down to 8,300—a normal reading. The speech therapist, Holly, stopped by and administered a bedside swallow study—the first since he received the tracheotomy tube. Unfortunately, he failed it miserably. He coughed up pretty much all of the liquids. Holly gave us some very large, lemony Q-Tip-looking thingies to swab the back of his throat. Although just thinking about it makes you want to gag, it was supposed to stimulate swallowing. This therapy was to be repeated about five times daily.

We still hadn’t seen the doctor when we left for lunch at 11:15 A.M., but we needed to leave. Chris, my cousin who had been visiting for the past week, was leaving at 12:30 P.M. to return to Phoenix. The airport is about 60 miles from my parents’ house, so we were fortunate that Chris was able to hire a limousine service to transport her. Then, Mom and I were home again, alone.

When we finally saw the doctor at 3:45 P.M., he tPAed Dad, which eventually released another 400 ml of fluid from my father’s chest. Before we left for the night, I swabbed the back of Dad’s throat with the lemon swabs. Dr. Sanchez told me and Mom that Dad’s transfer to the continuing-care hospital was imminent and to visit the continuing-care hospital the next day. At this point, we’d become weary of this place and were anxious to leave and were anxious to visit Dad’s new digs.

On Wednesday, June 17, Mom and I held our breath as we entered the hospital. It was hot outside, the parking lot was misery, and we really never knew what to expect when we got to Dad’s room. On this day, Dad’s WBC count had inched up to 11,500.

Much of our time that day was spent talking with Laura, the case manager, about moving Dad. We had many questions about payment and Medicare benefits. After Mom ran some errands, I picked her up at 11:30 A.M., and the two of us met with April, the nurse manager at the CCH. She seemed very pleasant, and we felt like this would be a good place for Dad to recover before heading home.

I worked from the house for the rest of the day, and Mom stayed with Dad. Dr. Sanchez told Mom that the X-ray showed that the chest tube and tPA had done their job. He also said that on the following day, Dad would have his chest tube removed and the dialysis catheter replaced to reduce the risk of infection. If all went well, he’d receive typical dialysis and be transferred to the CCH later in the day.

Although we were glad to be leaving Scott & White Memorial, it felt as though we were getting the bum’s rush.

It seemed like good times were right around the corner

Published on July 28, 2016August 2, 2016 by mellowdee551 Comment

It was Thursday, June 11, 2015. Mom, Chris, and I arrived at the hospital in time to see Dad on dialysis and the infectious diseases (ID) doctor in my father’s room. She said that Dad’s white blood cell (WBC) count was back up to 12,000, and that he still had a lot of infection. She then looked at me and asked if there was any correlation between dialysis and his WBC count. It seemed like a strange question coming from a doctor and I was slightly puzzled that she’d ask me. Her visit was followed by Dr. Issac, the nephrologist, who said that Dad still wasn’t producing enough urine. He’d need to produce at least twice as much for them to consider stopping dialysis.

When Dr. Velazco arrived, he said that Dad’s spontaneous breathing was good and his vitals were good, except for his WBC count. Because recent X-rays showed that the pneumonia had not cleared up as much as they had hoped, the doctor scheduled a CT scan for the next day. The CT scan and tomorrow’s CBC would be very telling about his condition. Before the doctor left the room, Dad told him that his trach tube hurt, which was remedied with Tylenol. When I mentioned my concern for our inability to get past three or four good days, Dr. Velazco said that today was most likely a good day. I perked up a bit when he told me that Svenja, the trach nurse (who I nicknamed the Trach Goddess of Scott & White), would stop by the next day to fit Dad for a speaking valve. Although the medical staff thought that we had a great letter board, it was a tedious form of communication. Dad was moved to the chair at 4:30 P.M. and was still there when we came back after dinner. As bad as sitting is for a person, it’s a danged sight better than lying in bed. Maximum chair time was a daily goal for us and the doctors, although Dad was not always onboard.

keys That day I also accompanied Mom to see the neurologist. For the past month, our lives had revolved around my father, and it was easy to forget that Mom had suffered a stroke—one that doctors had diagnosed as serious and life altering. In retrospect, I feel that I deprived her of the rehabilitative care that she deserved by not pursuing out-patient therapies. Although she’s much better now, it was startling to see how much the stroke had weakened her—similar to how one might have weakened from weeks in bed. My mother, who one month earlier had effortlessly walked the stairs, now opted for the ramps to access the hospital, and often had to stop to rest. Ideally, during the month that I had spent with her, she should have received speech and physical therapy. Instead, beginning the day after she was discharged, she was with me visiting Dad at the hospital. The good news was, not only could she now spell “world” backwards, she was told that she could drive again.

It was Friday, June 12, and doctor-change-out day at the hospital. From the get-go, it seemed like a really good day. One of our favorite nurses (Daytime Natalie) was Dad’s nurse and provided me with great morning vitals. Dad’s WBC count was down to 10,200 and Dr. Koshy, the ID, doctor said that he was doing well. This doctor was memorable because she always placed a glove over the cold stethoscope before she placed it on Dad’s chest. The good news kept coming when Dr. Sanchez said that Dad’s respirator was adjusted so that he was now breathing room air. He also said that he would have Dad’s arterial line (A-line) removed later in the day. Central lines and A-lines were highways to infection, so having them removed was a blessing. The only negative news of the day came from Dr. George, the nephrologist, who said that Dad still needed to produce more liquid gold.

veggies Mom and Chris stayed home after lunch and tended to my parents’ vegetable garden, which seemed to be exploding with tomatoes and cucumbers. During the early afternoon, Dad had his CT scan, which showed that his right chest cavity still held excess fluid. The doctor said that he might need another chest tube to clear it. Later that afternoon, Dad and I watched “Jeopardy,” which was one of the few normal activities that we had shared in a long time. Today we were fortunate to have two separate visits from pastors Tom and Don. Dad always seemed to brighten up after visiting with them. As if to underscore the good feelings of the day, Michelle, another of our favorite nurses, stopped in for just a moment to tell Dad how good he looked. When we returned to see him after dinner, Dad was back on CPAP. His oxygen levels had dropped some and he would receive full oxygen support during the night.

After such a good day on Friday, we felt optimistic that the trend would continue through the weekend. When we arrived at 8:15 A.M. on Saturday, June 13, Dad was still sleeping, was off CPAP, and was breathing on his own. His WBC count had ticked up slightly to 10,700, but Amanda, his nurse, wasn’t concerned. Dad’s hemoglobin level was also down almost a full point from the previous day, which meant that he needed another unit of blood. Amanda told me that Dad’s blood pressure had dropped overnight below a mean arterial pressure (MAP) of 65 and he required meds to raise it back to normal levels. I liked learning about MAP because I’d never been great at knowing when you had a good blood pressure reading. I knew some of the obvious readings, but Dad’s blood pressure was all over the place. The monitors alarmed only when the MAP dipped below 65. Understanding how to calculate the MAP would become important a few months later.

As Dad’s condition improved, the doctors started appearing later in the day. It’s an interesting situation—too sick to leave ICU, but not sick enough to be there. Mom and I had been a bit concerned about Dad’s congestion, his inability to stay awake, and the hemoglobin levels. When Dr. Sanchez arrived shortly before 1:00 P.M., he spent quite a bit of time suctioning Dad. He couldn’t explain the dropping hemoglobin levels and attributed it to Dad’s poor kidney function.

When Mom, Chris, and I returned after our very late lunch, we were pleased to see that Daytime Natalie had taken over for Amanda as Dad’s nurse. She informed us that Dr. Sanchez had requested an ABG test, and Dad’s blood gases were fine and were not responsible for his inability to stay awake. Dr. Sanchez was adamant about Dad getting out of bed and into the chair. With the help of a couple of other nurses, Natalie finally got Dad into the chair shortly after 5:00 P.M. From the moment he sat down, he was fussing to get back into bed. When we returned at 6:30 P.M., Natalie said that when they came back to move Dad back to bed, they could barely keep up with him; it was the most energy they’d seen from him all day. I guess we’re each energized by something, even if it’s the idea of going back to bed.

The letter board

Published on July 20, 2016 by mellowdee552 Comments

It was Sunday, June 7, 2015. After the events of the preceding couple of days, we were eager for some good news. Mom and I stopped by the hospital on the way to church and were pleased to learn that Michelle, one of our favorite nurses, was assigned to Dad. We were relieved to learn that he had had an uneventful night, which was always our goal for him. Although this day seemed to be starting well, the intubation yesterday had halted all of Dad’s forward progress with his swallow therapy. Following extubation, he’d be NPO again and he’d have start back at square one with bedside swallow evaluations.

During Dr. Velazco’s morning rounds, he told us that they planned to remove the final chest tube today. He also announced that they would perform a tracheotomy on Monday. He wanted to know whether he should tell Dad or if we wanted to tell him about the procedure. I told him that I would break the news to my father on Monday. He responded to me by saying that they would postpone the procedure until Tuesday. He assumed that Dad would want a day’s notice and I had to convince the good doctor that a day’s notice would not be in my father’s best interest. I had to also instruct the day and night staff to avoid saying anything to my father.

While Mom and I attended church, Stan visited with Dad. Stan was always good company for Dad, but visits with patients on ventilators are awkward and uncomfortable—even for saints like Stan. While on the ventilator, the respiratory therapists perform breathing trials. During breathing trials, the oxygen concentration is reduced, with the goal being to get as close to 21% as possible for as long as possible. Today’s therapist informed us that Dad was doing well and was currently receiving a low level of oxygen.

Monday arrived, and I wasn’t looking forward to this trip to the hospital. Shortly after I arrived, Dr. Velazco entered the room. I gripped Dad’s hand and told him about the tracheotomy. Not surprisingly, he seemed a little nervous. I told him that I believed that having a tracheostomy was best for him, and it seemed like he believed me. Dad’s dialysis session was interrupted for about an hour, during which time Dr. Velazco and another doctor performed the tracheotomy.

Now that Dad has a tracheostomy, he can’t talk. He had made a letter board for his mother when she developed Guillain-Barré syndrome, and now Dad requested that we find it during our lunch break. After searching unsuccessfully for it, I decided to create one, and searched the internet for some ideas.

Tuesday, June 9 was my birthday. Stan was back in Houston, but Chris, my cousin was due to arrive later in the day. Because I had to attend an early staff meeting, Mom and I didn’t arrive at the hospital until 9:30 A.M. According to Michelle, Dad had already sat in a chair for two hours and had had his feeding tube replaced. His WBC count was down to 10,700, and the doctor had removed his right chest tube.

Dad was receiving lower levels of oxygen when we arrived in the morning, but was returned to full ventilation in the afternoon. The tracheostomy provided a benefit that we hadn’t anticipated. Before the tracheotomy, full ventilation required intubation. Following the tracheotomy, the difference between full ventilation, BiPAP, and CPAP involved changing the levels of oxygen going to the tracheostomy. That benefit alone seemed worth the price of admission, although I wasn’t the one who had a hole in my throat.

letterBoard Thanks to his wonderful nurse, Dad also had a procedure of a different type. Michelle, who keeps her beautician license up-to-date, gave Dad a nice shave. He hadn’t shaved since he entered the hospital on May 6, and the change was dramatic. He looked almost like his usual self.

All things considered, today seemed like a good day. My parents and I celebrated my birthday in the hospital, but after dinner their neighbors, LoSharris and Tom, came over to my parents’ house for cake and ice cream with me, Mom, and my cousin, Chris. It was also Tom’s birthday and it was nice to have a little party.

On June 10, we learned that Dad had had a pretty good night and was currently on CPAP. The plan was to keep him on lower levels of oxygen during the day and then provide him ventilator support during the night, which would give his lungs a rest. If his breathing kept improving at this rate, the trach nurse would fit him for a speaking valve.

The feeding tube was a constant challenge, and today it became clogged. Megan, Wednesday’s nurse, tried using Coke to clear it, but to no avail. Listening to the discussions about all the ways you can use Coke made me glad that I didn’t drink the stuff. After struggling to insert the replacement tube, an X-ray finally showed that the new tube was correctly positioned.

My cousin Chris and I had some interesting letter board conversations with my father, which prompted us to add a few more words to the board. Communicating with a letter board was exhausting, but together Chris and I could usually figure out what Dad wanted to say.

When we returned to the hospital after dinner, we met Drew, the night nurse. Something about him seemed very familiar. When he mentioned that my mother looked better than the last time he saw her, I realized that he was my mother’s nurse for her first night in the hospital. Because of her stroke, Mom had no memory of him. He was her nurse for only one night, and he usually worked in the south tower, which was why we hadn’t seen him since May 15. Before we left for the night, Drew had fixed Dad’s arterial line splint, adjusted his dialysis catheter lines, and adjusted the feeding tube, making it more difficult for Dad to pull out in his sleep. After watching him take care Dad, I was thankful that Drew had been Mom’s nurse that terrible night.

In spite of the tracheotomy, today seemed like another good day—the third good day.

Four good days in a row was beginning to seem like an impossible goal

Published on July 13, 2016 by mellowdee55Leave a comment

It’s June 5, 2015. Mom and I arrived at the hospital at 8:45 A.M. We’d had three good days and were hoping for the ever elusive fourth good day. Because it was Friday, we were greeted with a new set of doctors. Dr. Velazco returned as the pulmonologist and Dr. Issac was the nephrologist. We hadn’t been in the room long when I started feeling a little anxious about our four good days. In addition to Dad’s WBC count being up by 3000 points from the previous day, he sounded somewhat congested. He coughed throughout the day, but seemed unable to expel any of the secretions from his lungs.

The dreaded dialysis machine returned and removed approximately 2400ml of fluid during the eight-hour session. We had been told that the dialysis was a temporary procedure so that his kidneys could “rest,” but we wondered how much rest they needed. Holly tried to see Dad for swallow therapy, but he was asleep and could not be roused.

The respiratory therapist gave Dad a breathing treatment, which seemed to provide him with some small amount of relief. When Mom and I left at 4:00 P.M., Dad was still sleeping.

Stan’s late arrival into town caused us to run behind schedule, so we didn’t return to the hospital until 7:30 P.M., well after the shift change. His night nurse, Carolina, entered his room—her first time seeing him that evening.

Dad appeared weak and it seemed to me that he was struggling to breathe. Carolina spent a considerable amount of time suctioning him and getting him cleaned up for the night. He seemed a lot better when we left, but this didn’t really feel like a good day.

My good-day counter remained at 3.

respirator Because it was Saturday, I slept in until 6:45 A.M. I usually slept with my phone on the nightstand, but I had inadvertently left it in the family room the previous night. I retrieved the phone and noticed that I had missed a call from Scott & White at 5:14 A.M. In a panic, I called the hospital and Kelli, the charge nurse answered. She told me that at 3:00 A.M., they had had to intubate my father. Evidently, he went into hypercapneic respiratory failure. Fortunately it was an emergency situation, so they didn’t need to obtain consent from someone separated from her phone. They also reinserted an arterial line in his right arm. In addition to all this good news, his WBC count had elevated to 15,000, which meant that yesterday’s elevation really was the beginning of the end of our good-day stretch.

When we met with Dr. Velazco that morning, he said that he would perform a bronchoscopy so that he could see what was happening in Dad’s lungs. They would also collect secretion samples. Knowing more about the infection in his lungs would help them target the infection with the correct antibiotics.

Mom and I left the hospital during the bronchoscopy. Because Dad was fully ventilated, the process was somewhat simpler, with the possibility of fewer complications. The rains that had started a couple of weeks earlier had finally stopped, and the daily temperatures were beginning to rise. When we stopped by the house, Stan was braving the heat to mow the lawn.

When we returned to the hospital after lunch, Dr. Velazco told us that he had removed a lot of “chunky” secretions from Dad’s lungs. Dr. Velazco was from Peru, was soft spoken and spoke with an accent that my parents couldn’t understand, but I really liked him. He took time to explain my father’s situation and often skipped the $20 technical terms for the easy-to-understand 5-cent words. The removal of this “chunky” matter improved Dad’s oxygen saturation levels, which zoomed from the worrisome 80s to 100%.

Somewhere around 2:00 P.M., I received a text message from a phone number that I didn’t recognize. The message said that there was a birthday hug waiting for me in the ICU waiting room. The mystery texter turned out to be my long-time friend, Susie. She had been in Dallas (a three-hour drive from Temple), and thought that she’d stop by to say hello.

friends Susie’s appearance in the waiting room was just one example of the random acts of kindness that my mother and I received during my father’s ordeal. I still marvel at our good fortune to have been blessed with such wonderful selfless friends. The neighbors seemed to instinctively know when we needed a meal, some cookies, or a hug. My friend Rhoda gave up a week of her time in Wisconsin to help when Mom had her stoke, and in three days, my cousin Chris would be arriving from Phoenix to help out for a week.

Although I loved their support, I never stopped hoping that I wouldn’t need it much longer.

Today was Dad’s one-month anniversary in the hospital, and the good-day counter had been reset to 0.

Can we score four good days?

Published on July 6, 2016 by mellowdee55Leave a comment

June 3, 2015. We arrived at the hospital around 8:45 A.M., slightly later than our normal arrival time. I queried the nurse about Dad’s morning labs and learned that his white blood cell (WBC) count was up slightly to 12,600. I was told to not worry, but I had been keeping track of good days versus bad days, and it seemed like we couldn’t maintain forward progress. Bad days were generally preceded by an increase in his WBC count. I logged this information, kept my thoughts to myself, and gave Dad a big smile. According to his nurse, he had had a pretty good night, but when questioned by the doctor, was not able to remember that the year was 2015.

PINEAP01 Dad was awake, alert, and was glad to see us. He had required BiPAP support while he slept, but they had stopped his medication for hypotension. It seemed like we were on track to have the Modified Barium Swallow Study (MBSS) later in the morning. He had received permission to have ice and thickened juices, and he was ready for both. Holly, his speech therapist, had provided me with thickener, so I prepared some thickened apple juice for him. He drank it, but told me that he’d rather have pineapple juice. The hospital didn’t keep it onhand, so Mom and I promised to bring some from home.

At 11:00 A.M, Dad was taken to Radiology for his MBSS. Transferring him from his bed to a stretcher was a major production. A wound vac was connected to his chest and two receptacles were attached to his chest tubes. He also sported a central line for his IV medications and he still had the arterial line in his right arm.

As I mentioned in an earlier post, I really liked Scott & White’s patient record system. Shortly after Dad returned to his room, Holly stopped by and showed me the videos of Dad’s MBSS. This video was one of the coolest things I’d ever seen. Your body is doing some pretty complex stuff when you swallow. I’m astonished that we don’t choke on a regular basis. His test results showed that he was still silently aspirating thin liquids, like water. However, he had no trouble swallowing pudding or thickened liquids. He couldn’t, however, eat enough pudding to sustain his nutritional requirements, so the feeding tube had to remain.

He hadn’t been out of bed since his return to ICU 10 days earlier. The physical therapist stopped by to help him move from the bed to the chair and mentioned that his strength and balance had decreased significantly. As he did with most hospital personnel who entered the room, he told her that he was anxious to get moving again and that he wanted pineapple juice.

Dialysis started late in the day and continued for six hours and didn’t end until after Mom and I went home for dinner. Dad’s day seemed to go better than I had originally thought it would. Mom and I advanced the good day counter to 2. We were now hoping for three in a row.

tPA_structure — Structure of the PLAT protein

When we returned to the hospital on Thursday, June 4, Dad was already sitting in a chair; he had been there since 5:30 A.M. We arrived early enough to meet with Lyndee, Dr. Sai’s PA, Dr. White, and the nephrologist. Lyndee told us that Dad’s WBC count was 10,000, which is practically normal. She also told us that they would remove his arterial line today. Lyndee also mentioned that Dad’s right chest tube had stopped draining. She explained that to break up the clot, she would insert a tissue Plasminogen Activator (tPA) into his right tube. She also mentioned that tPA is also used to dissolve the clots in stroke victims. She was fairly certain that the left drain had done its job and they could remove it tomorrow. Having the tPA meant that he could not be dialyzed and could not have speech therapy.

Lyndee quickly explained the tPA procedure to Dad. When she was finished, I asked him if he understood what she said, and he shook his head. I proceeded to explain the process to him, using single syllable words. When I was finished, Lyndee said, “That was great. We should have you explain this to all our patients.” I really liked Lyndee, but I felt like telling her that explaining procedures to patients in a way that they could understand was her job.

While Mom and I ran errands and had lunch, Lyndee inserted the tPA in Dad’s right drain. He had to be kept prone for a few hours and the nurses rotated him every 15 minutes. He was very sleepy and slept through most of it.

At 3:30 P.M., Lyndee removed the clamp on Dad’s right chest drain, which released 250ml of fluid in less than 5 minutes. We were cautiously optimistic that only infected fluid was being released, and not blood or other vital fluids. Shortly thereafter, Fred, his day nurse, removed his arterial line from his right hand.

Mom and I stopped by after dinner in time to see a lab tech enter Dad’s room to draw blood for a hemoglobin test. The chest tube receptacle showed that more than 750ml of fluid had been released since the tPA was finished, which was more than twice what had drained from his right chest cavity. I couldn’t decide whether to be pleased or nervous, so I decided to err on the side of pleased.

Before leaving, I prepared some pudding for Dad and got him some ice. It seemed that we had had another good day—the third one in a row. Advance the good day counter to 3.