aspiration – Tale of Two Parents

A good day in the ICU gets Dad one step closer to a room on the patient floor

Published on December 18, 2018December 18, 2018 by mellowdee55Leave a comment

August 27, 2018. Mom and I arrived at Dad’s room around 8:30 A.M. Dad was a little confused about where he was and why he was there, and I spent a lot of time trying to explain his situation to him.

At 9:50 A.M., Adan arrived at Dad’s room with Emily, his trainee, to conduct a swallow assessment. I was relieved to see him and knew that Adan would conduct a proper assessment that wouldn’t adversely impact Dad. Before he started, Adan left the room to review Dad’s chart. Within moments of his return, the doctor and his entourage of residents and other providers stopped by Dad’s room for morning rounds, which meant that Adan had to postpone his assessment. After conferring with his associates for a few minutes, the doctor told me that Dad’s hemoglobin and platelets were low. It seemed counterintuitive to me, but the doctor said that he’d probably order blood thinner for Dad to address both problems. Because Dad’s fistula had clogged during his last dialysis session, the nephrologist had entered an order for Dad to go to interventional radiology (IR) to have his fistula checked out. If Dad was lucky, clearing out the clog would be a simple process. If the interventional radiologist could not clear the clog, he would need to insert a dialysis catheter in Dad’s neck. I said a silent prayer for Dad’s good luck.

Shortly after the doctors left, Adan and Emily returned. In case a patient aspirates fluid during a swallow study, it’s important to have a clean mouth so that a minimal amount of bacteria goes into the lungs. Because Dad had not brushed his teeth since he arrived five days ago, Adan had him brush his teeth before starting the test. After observing Dad drink some water, Adan said that he had a productive cough and a good swallow. They then had Dad drink some cranberry juice, followed by some pudding. I was thrilled when Adan said that he had not observed any sign of dysphagia, and would order a menu for him. He warned us that food trays get a low priority in the ICU, so he couldn’t guarantee when Dad would get a meal. As Adan left the room, he said that Dad was probably the healthiest person on the floor, which was the best news that we had heard since Dad entered the hospital.

At 10:15 A.M., I saw a familiar face walk by the door. I quickly left the room and was able to stop Dr. Heath White. We had had quite a history with Dr. White in 2015. He had tended to Mom after her stroke and then had periodically been Dad’s attending physician for a couple of months. We chatted in the hall for a few minutes, and he said that he was surprised that it had been three years since he had seen Dad. While we were talking, he pulled out his phone to peruse Dad’s charts to see when he had last added a note to Dad’s chart. As he left, he told me to contact him if we ever had any pulmonary problems. It was good to see a familiar face, and I regretted that he had not had an opportunity to see Dad last year when he looked and felt so well. As much as I liked Dr. White, he had often had negative predictions about Dad’s prognosis.

At 11:00 A.M., Leslie removed Dad’s feeding tube. She then told me that she had started Dad on a new blood thinner to prevent clotting. Because his hemoglobin was low, he might receive a blood transfusion. We had been down this low hemoglobin path three years ago, and I hoped that one unit of blood would do the trick.

Now that Dad was more alert, he talked a blue streak. Not everything that he said was based on reality, and he was still confused about where he was. He thought that he would be going to a hotel and that he would be coming home with us tonight. However, when he and Stan talked about sports or chores that Stan could do around the house, Dad was as lucid as the rest of us. I couldn’t wait until he was moved out of ICU, an environment that often contributed to confusion and delirium.

Shortly before noon, an aide from food service brought Dad his lunch tray. His first meal in five days consisted of puréed chicken noodle soup, milk, iced tea, and orange sherbet. Because he thought that the consistency of the soup was like a milkshake, he decided to use a straw to eat it, which proved to be very messy. While holding the bowl, he tipped it, and half of the soup ended up on the bed. He was able to consume some of it before he devoured the sherbet. Eating again was an important milestone. Although it had been a messy meal, I was practically giddy with relief that he had been able to eat.

After Dad was cleaned up from his lunch, Mom, Stan, and I went home for our lunch. Stan then left Temple around 1:30 P.M., hoping to beat Houston’s afternoon rush-hour traffic. Shortly after he left, I received a text message from Pastor Tom. He indicated that he had spoken with Dad, but he wasn’t sure what was going on and asked me to call him to clarify Dad’s status. Dad was pretty lucid when it came to talking about yard maintenance or sports, but he was pretty confused about his status and what was happening to him. I could understand how Tom would also be confused following a conversation with Dad.

When Mom and I returned to Dad’s room shortly before 3:00 P.M., Dad was sleeping. He woke up to let us know that he would be receiving some blood and platelets. Leslie came in a few minutes later and confirmed that he had been typed and matched and was ready to receive the transfusion when the blood arrived. I was pleased that Dad could accurately relay some information to us about his status.

Dad’s status had improved dramatically. He no longer required medication to elevate his blood pressure, and now he was eating. He was still a sick puppy, but not sick enough to warrant ICU care. I had hoped that Dad would be moved from ICU to a patient room, but now that move seemed doubtful for today. The hospital generally does not like to move patients from ICU while they’re receiving blood. It was getting late, so we were not sure if the IR schedule could accommodate Dad.

As we were preparing to leave the hospital at 5:30 P.M., Leslie told us that Dad should be moved from ICU to 634 North before the shift change. If his food tray arrived after the shift change, she said that she would take his dinner tray to him. Although the 6th floor had a higher patient-to-nurse ratio, she said that they had many more aides and that one of the aides would assist Dad with dinner. When I asked about the blood transfusion, Leslie said that he should be able to receive blood overnight.

When I returned to my parents’ house, I wrote an enthusiastic email message to my sister-in-law, telling her about the turnaround in my father’s health in the past couple of days. Today had been a great day. Dad hadn’t had his fistula checked out, but it felt like he had turned a corner. Mom and I both felt optimistic about Dad’s prognosis.

Holding steady in the ICU

Published on December 4, 2018December 2, 2018 by mellowdee55Leave a comment

August 25, 2018. When Dad had been hospitalized in 2015, extended time without eating had left him unable to swallow food without aspirating. Against all the odds and the prognostications of the naysayers, he had regained his ability to swallow again. The fear that he could suffer again from dysphagia gripped me, probably irrationally. Before Mom and I left home for the hospital this morning, I texted Adan, our friend and speech pathologist at Scott & White, for his advice. He told me to ask the attending physician for a speech consultation. Adan added that he was off work until Monday, but that he would alert Holly, the speech pathologist who was working this weekend. Holly was another Scott & White employee I really liked. Even if she couldn’t help Dad this weekend, just seeing her would provide calming relief to Mom and me.

Mom and I arrived at the hospital shortly before 8:30 A.M. When we entered Dad’s room, I checked the board to see the names of the nurses and aides who were assigned to him today. When I saw that Natalie was his nurse, I wondered if it could be the Natalie that we knew in 2015. Less than a minute later, I got my answer when she walked into the room. I was so thrilled and relieved to see her again that I ran to her and hugged her. In retrospect, I probably picked up all sorts of germs when I hugged her, but I didn’t care and would do it again. Not only was she an angel in blue scrubs, but she was also familiar with Dad’s medical history. Natalie, whom we had referred to as Daytime Natalie, usually worked in the Cardiothoracic Intensive Care Unit (CTICU) and was helping out in the Medical Intensive Care Unit (MICU) for a few days. Dad had also been in the MICU unit for about a month in 2015, and another nurse came by to say hello, saying that she thought that we looked familiar.

Shortly after our reunion with the nursing staff, the nephrology resident stopped by and said that she didn’t think that Dad needed to be dialyzed today. However, she added that the nephrologist would stop by later during nephrology rounds, and he would make the final decision after seeing Dad.

At 9:45 A.M., the doctor and his entourage of fellows and residents entered Dad’s room. He reiterated that Dad was very sick. His low blood pressure, which they were keeping in the safe range with Levophed, was affecting his liver, kidneys, and lungs. When I asked about a speech consultation, he said that Dad’s blood pressure would need to increase before they could consider letting him swallow food. He went on to say that as it was, Dad was in danger of aspirating his own saliva. When I mentioned that Dad’s face and extremities seemed very puffy from excess fluid, the doctor said that dialyzing him could have unintended consequences. Although Dad needed to have some of his excess fluid removed, removing the fluid could cause his blood pressure to drop, so dialyzing him today seemed out of the question.

The doctor asked me about whether we would consent to using a ventilator. I told him that I would view using a ventilator as a last resort. When I asked if we could use CPAP or BiPap for oxygen instead of a ventilator, he said that CPAP had some risks, but inserting the ventilator also carried risks because you had to anesthetize the patient. I was so frustrated with Dad’s situation, and it seemed that everything hinged on our ability to increase his blood pressure. I hoped that Mom and I would not be faced with this decision.

Just when we thought that we understood Dad’s plan for the day, the dialysis nurse entered the room. By 11:30 A.M. she was finished with Dad’s setup, and his eight-hour session had begun. She told us that the nephrologist wanted to see if they could safely remove 300 ml/hour. Over an 8-hour period, he could have as much as 2,400 ml removed, which would be great if he could tolerate it. They had given him a liter of saline the other day to increase his blood pressure, so I was not overly optimistic that they could reach their goal. The dialysis machine monitored Dad’s blood pressure and would alarm if Dad’s blood pressure dropped. Dr. Idoux, the nephrologist, said that Dad might need to be dialyzed every day for a while if he could tolerate it. I prayed that we could safely remove all of the excess fluid that he had accumulated over the past 7 to 8 months.

Because I knew that she would be honest with me, I spoke with Natalie about the wisdom of my leaving Dad for about 20 hours. She said that he seemed to be trending in the right direction, although during her time as a nurse, she had seen patients die who were about to be discharged. On that happy note, I posted my mobile phone number in the room and ensured that the nurses would contact me if I needed to come home. Johnson City was only a two-hour drive from Temple, and we would return if she or another medical provider thought that Dad was in jeopardy.

After taking a short lunch break, Mom, Stan, and I returned to Dad’s room at 12:45 P.M. Dad was still on dialysis, and his blood pressure was still holding steady. Levophed was supporting his blood pressure, but they had not needed to increase the dosage to compensate for the loss of fluid. Dad seemed a bit more aware, but he still faded in and out. I prayed that he would not wake up, notice that he was on dialysis, and pull out the lines.

I hugged my parents goodbye, and Stan and I left for Johnson City at 2:35 P.M., hoping and praying that both of my parents would be OK until I returned home tomorrow morning.

Remembering that recovery can be the worst part of surgery

Published on November 20, 2018 by mellowdee551 Comment

August 23, 2018. Mom and I arrived at Dad’s room shortly after 8:30 A.M. Following earlier surgeries, he had suffered from post-surgery delirium, and I wondered how confused he would be about his surroundings and his situation. Dad was still sleeping when we arrived, and his breakfast tray sat untouched on his bedside table. I was pleased that his breakfast included Cream of Wheat, which he called gruel and which he could easily swallow. Because of his aspiration history and the weeks of swallow rehabilitation therapy required to recover from this disorder, I was always nervous about letting him go too long without eating, and almost 40 hours had elapsed since his last meal. I was able to wake him without much difficulty and coaxed him to swallow two or three spoonfuls of the now-cold cereal and a couple of sips of orange juice before he drifted back to sleep.

A few minutes later, Lisa, his nurse, came into his room. I could tell from the monitors that his blood pressure and pulse were trending downward, and Lisa started making some phone calls. Dr. Christopher Sartin, the orthopedic surgery fellow, stopped by and ordered a blood test to check Dad’s potassium level. The lab tech was unable to find a vein, and eventually had the nurse pause Dad’s IV so that she could draw blood from the IV line. I had inherited Dad’s stubborn veins and understood the torture this activity could be, and I hated to watch him endure it.

When the lab tech left, an aide checked Dad’s blood sugar, which was down to 54, which is very low. His temperature was also low, and his blood pressure was 90/58. A couple of minutes later, Lisa called the doctor again, and I overheard her say something about calling for a rapid. Moments later, I heard an announcement that Mom and I had heard numerous times during Dad’s previous hospital stays but never for him: Rapid response medical alert; in-patient room 546 South.

Dad had been assigned to an unusually large room, which suddenly became very crowded. In addition to his nurse, the room was now being filled with the rapid-response nurse, the charge nurse, the other nurses assigned to 5 South, therapists, doctors, the pharmacist, and the chaplain. In case Dad needed to be moved, someone from the Transportation department waited in the hall outside of his door. Because they kept moving around, I lost count of the number of people in the room after I counted 12 of them. One of the nurses was one who we knew from Dad’s 2015 stay in the hospital, and she continually updated us on what the team was doing and what they were considering. As she disseminated information to me, I relayed it to Mom, who was now very nervous. I overheard them say something about giving Dad Narcan to rid him of any opioids that he had received during surgery.

Thinking that the blood pressure equipment might not be correctly recording, they tried two different machines and then tried the manual process, but all of the readings were similar. To elevate his blood sugar, they gave him dextrose. Myriad devices were ushered in and out of the room. I supposed that there was some bodily function that they didn’t measure, but I couldn’t imagine what it was.

To increase his blood pressure, they started giving him a bolus dose of saline. Although I prefer saline over Lopressor alternatives, I thought that I should tell our friendly nurse about Dad’s fluid overload condition, although at this point, they were fighting to stabilize him. They could address his fluid situation later.

After 30 minutes, Dad’s blood pressure was 104/71 and his blood sugar had increased to a safer 85. The rapid-response team finally decided to move him from the orthopedic surgical floor to surgical ICU (SICU). Fortunately, a room was available, and the transportation tech and the nurses started preparing Dad for the move.

Mom and I followed Dad’s bed through the halls and elevators to room 202 North. As he was being resituated in his room, a nurse walked in and started talking with the doctor. As soon as I heard her voice, I knew that Dad was in good hands. I immediately said, “Hi, Ursula! Do you remember us?” It took her about a nanosecond to remember us. I had to remind Mom that Ursula (from Transylvania) was Dad’s first nurse when he was brought to the Cardiothoracic Intensive Care Unit (CTICU) following his aortic valve replacement surgery on May 6, 2015. She said that she was the SICU charge nurse and would get him situated, and that Debra would be his nurse.

Dad’s temperature was still low, so the doctor ordered a Bier Hugger to warm him. Because he wouldn’t be getting out of bed anytime soon, Ursula also started a Foley catheter. It was now 11:50 A.M., and we still hadn’t had a coherent conversation with him since he was wheeled to surgery yesterday morning.

I started having unsettling feelings of déjà vu when the nurse inserted a feeding tube at 12:15 P.M. I knew that it was necessary, but it seemed like a big step backward. A few minutes later, Dr. Jonathan Curley, the resident SICU doctor, asked us to leave the room because he wanted to start an a-line in Dad’s arm, which required a sterile environment. The a-line would enable the doctors to monitor Dad’s blood gases and continuously monitor his blood pressure. Because you cannot insert IVs, draw blood, or take blood pressure from an arm that has a fistula, starting IVs and a-lines was more difficult now that he had a fistula in his left arm.

When Mom and I returned to the room at 1:00 P.M., the doctor was trying unsuccessfully to start another IV line. About an hour later, Patricia, a tech from the cardiac unit, administered a cardiac ultrasound. She couldn’t tell me what the test would show, but I assumed the doctor wanted to see if his heart function had improved.

Around 3:00 P.M., Dad’s first IV infiltrated and they needed to start another IV. Unfortunately, his body wasn’t giving up veins without a fight. Dr. Curly called in another resident, whom I nicknamed the vein hunter. He also used ultrasound and he eventually found a vein on Dad’s upper right arm. Dad’s MAP was still very low, hovering between 54 and 58, but he was receiving more albumin to raise his blood pressure. I kept hoping that the albumin would start working. His MAP needed to increase to at least 60 (ideally 65).

By 4:15 P.M., Dad had finished receiving his dosage of albumin, but his MAP had only inched up to 59-60. However, his glucose level had increased to a more normal level of 92.

Although Dad was awake for much of the afternoon, he wasn’t making much sense. At 4:45 P.M., Mom and I were exhausted from this emotionally draining day, and I was concerned about the emotional strain on Mom. We decided to go home for the evening. As we walked out to the parking lot, I received a text message from Sharon, one of Mom’s dear neighbors, saying that she and her husband would provide us with dinner. After we arrived home, I walked across the street to their house to tell them about the day and to accept their offer of dinner. They said that they would bring the meal over in about 30 minutes.

I had been back in the house for only a few minutes when my phone rang at 6:06 P.M. It was Dr. Yawn from the hospital. He started by saying that Dad was stable but followed that statement by asking if my mother or I had medical power of attorney. He said that although Dad was stable now, he was pretty sure that he wouldn’t stay that way. He said that Dad’s heart was not doing well. They had performed an echocardiogram yesterday, and the side of the heart that pumps blood to the lungs was strained. He also said that Dad’s ammonia level was elevated, which was causing much of his confusion. The doctor said that the elevated ammonia level was the result of his elevated liver enzymes and depressed clotting. He said that they were giving him medication to address the elevated ammonia. He seemed to think that Dad had more confusion than from just anesthesia, but I told him that I had been anticipating 3-4 days of confusion, which had become normal for him after surgery. He had no response, and I felt that he discounted what I said.

He went on to say that Dad had been slowly responding to some medication to elevate his low blood pressure, but that IVs cannot be used to administer most of the Lopressor class of drugs, which would require a central line. Dr. Yawn needed permission from us to insert the line so that they could administer these drugs. I reluctantly gave him permission to proceed with the procedure, which would require an interventional radiologist.

Dad seemed to be making urine, but because of his liver situation, the doctor said that he would not be able to be dialized if his kidney function failed. The organs have a pecking order of importance, and it seemed that the liver trumped the kidneys, so that anything that might help the kidneys but compromise the liver would be off limits. The Doctor went on to say that Dad had the potential for severe liver problems, which would yield a severe outcome. He asked if Dad had a history of liver ailments. I told the doctor that the only problem that he had had was when he was very ill in 2015 and his liver was in shock for a few days.

The conversation continued to get worse when Dr. Yawn started asking about any extreme measures that we would want to hospital personnel to take should Dad’s heart stop beating. I didn’t want chest compressions, but I felt that I should discuss this issue with Mom, and then call him with our decision.

Mom and I had a long and heartbreaking conversation about this question. In the end, because Dad had signed a DNR for his surgery in 2015, I felt certain that he would not want the chest compressions, and I pleaded with Mom to agree. During the past 30 years, Dad and I had had several conversations about procedures that he would not want at a later stage in his life. I now prayed that he would have stuck with those declarations, had he been able to speak. Although we watch TV and movie doctors give chest compressions, in reality, the act is violent. Mom reluctantly agreed to forgo extreme measures, and I called Dr. Yawn. When I told him the reasons for our decision about not administering chest compressions, he agreed and used the word gruesome to describe the process.

I asked the doctor to call us during the night if any event occurred so that we could go to the hospital to be with Dad.

As I ended the call, the doorbell rang. Sharon, and her husband, Jim, were on the front porch holding our hot dinner, which they had just finished preparing for us. I thanked them profusely for their kindness and quickly told them about our phone call. After they left, I put most of the meal in the refrigerator. During the past 30 minutes, Mom and I had lost our appetite.

I didn’t sleep well, but at least my sleep was not interrupted by a ringing telephone.

Improving at a snail’s pace with speed bumps

Published on December 26, 2017December 25, 2017 by mellowdee551 Comment

January 22, 2016. Today started out well. I started to work at 3:45 A.M. and stopped about three hours later for a breakfast break. I was surprised to learn that Dad was still sleeping. A few minutes after I returned to work, I heard Dad and Dianne talking in the bedroom. After she unplugged him from the tube feed, he used the walker to go into the closet to pick out his clothes for the day, and then he got dressed. Dianne later told me that it was a blessing to witness how far he had come.

Dad, Dianne, and Mom ate breakfast at 8:15 A.M., Dad having his usual Cream of Wheat with honey, and a pear. About 90 minutes later, he said that he didn’t feel well, and then started vomiting. Surprisingly, he vomited only mucus and not his breakfast. I was perplexed about what might have caused the vomiting. Fortunately, Stephanie, the nurse, had already called us and was scheduled to arrive within the hour.

When Stephanie arrived, she couldn’t shed any light on why he might have been sick. She said that although he seemed to have a lot of phlegm, his lungs sounded clear. She and I then had a long talk about the amount of fluid that was being removed from him during dialysis. He didn’t appear to be retaining any fluid, and his dry weight seemed low to me. Stephanie was no nephrologist, but I asked her if she thought that measuring Dad’s ankles every day might help us to determine his level of fluid retention. She said that she thought that that was a good idea and suggested that we give it a try.

Janet stopped by for Dad’s occupational therapy session, and she and Dad had a long discussion about his lack of exercise between their sessions. He didn’t like to do it, and I doubted that anything she said would make any difference. She said that she would return next week, but I didn’t know how much more we’d see of her after that. She had been working with Dad on building up his core, and today I was pleased when I learned that she would lead both Mom and Dad through the exercises. I had Dianne record the session so that they could repeat the exercises when Janet wasn’t here.

When Janet left, I took a break from work to eat lunch. When I returned to my computer about an hour later, I was greeted by the blue screen of death. I called my employer’s help desk and ran through some diagnostic tests to determine if we could fix the problem, but the tech finally said that he would open an urgent issue. I was lucky. The now-dead computer was very new, and I still had my old laptop with me. The IT tech from the Houston office called me and said that he was sending me a loaner computer via FedEx, which meant that I wouldn’t need to drive 60 miles to our Austin office, which had been a concern. I spent the remainder of my workday using my old computer to work on a website. I was thankful that I had enabled daily backups of my computer.

While I was playing with blue screens and the help desk, Dianne and Dad were walking around the house and running through his balancing routines at the laundry room sink. During happy hour, he navigated himself into the sunken sunroom. He still needed some assistance to step out of the room, but his skill with the walker was improving.

We were finished with our dinner of enchiladas and chocolate cake before 7:00 P.M. Dianne was getting better at Oh Hell and was tonight’s winner. We were finished with our card game by 7:30 P.M., and by 7:55 P.M. Dad was drifting off to sleep.

January 23. Although it was Saturday morning, I woke up shortly after 3:00 A.M. While I was lying in bed wondering why I was awake, I heard a loud crash through the baby monitor. I jumped out of bed and ran downstairs and into Dad’s room. It seemed that he had swung he feet out of bed and was attempting to get out of bed, forgetting that he was attached to the tube feed, which hung on an IV pole. Having the contraption fall was only a small problem. The fact that Dianne had not secured the top of the tube-feed bag when she refilled it was quite another. The sticky Nepro seemed to have been sprayed all over Dad, his bed, and the floor. Once again, I was very thankful that Stan had purchased floor mats to cover my parents’ bedroom carpeting.

While Dianne was cleaning up after Dad’s handiwork, Dad wheeled himself into the bathroom and got himself cleaned up for breakfast. After his breakfast of Cream of Wheat, he wanted another cup of hot water, which prompted another knock-down drag-out about what he could and could not do with water. Kristen, the speech therapist, had told him on numerous occasions that he could not drink water unless his mouth was clean. Drinking water immediately after eating was strictly forbidden—at least for now. I reminded him that by March 1st I would be out of here, even if he gave himself pneumonia again by aspirating on food particles.

Mom and I were still concerned about Dad’s dry weight and followed his bus to the dialysis center so that we could talk with his nurse about the amount of fluid they had been removing. We had spoken with Sue, our friend and nurse practitioner, only a week ago, but I still thought that they were removing too much. After speaking with the charge nurse, she said that they would remove only the minimal amount—1200 ml. Mom and I had been loaded for bear, and the encounter with the nurse was very anticlimactic.

On the way home from the dialysis center, Mom and I stopped at HEB. I preferred shopping during early morning hours when no one was around except the people who restocked the shelves. When we pulled into the parking lot, we noticed the strangest sight—hundreds of blackbirds were sleeping in the parking lot. Dozens of them were on the ground, and many others were sitting on the tops of the employees’ cars. As we drove through the parking lot, they didn’t stir. They remained still as we walked passed them and into the store. By the time that we left the store, the birds were gone.

Stan arrived from Houston at noon. He hadn’t been in the house for more than two minutes where we heard the HOP bus arrive with Dad and Dianne. Dianne reported that Dad had weighed in at 66.2 kg, and true to her word, the nurse had removed only 1190 ml of fluid, leaving Dad weighing 65.4 kg.

After lunch, Mom and I ran a couple of errands, and when we returned, Stan and Dad were playing cribbage. After beating Stan at a couple of games, Dad finally wanted to take a nap. He told Dianne that he wanted to get up by 5:00 P.M., a little less than two hours from now. She tried to wake him at 4:45 P.M. and then again 45 minutes later. She was finally able to rouse him at 5:50 P.M., but he stated that he didn’t feel right. He joined us in the living room as we were ending our happy hour. Dianne prepared some shaved ice for him, and during the remainder of our happy hour, Dad talked a lot about his mother and her final days battling Guillan Barre Syndrome.

We had a nice dinner, but Dad didn’t eat much. At Dad’s request, we played a longer game of Oh Hell and didn’t start heading toward bed until 8:45 P.M. After Dad got into bed, Dianne left the room to get ready for bed. She was gone for only a couple of minutes when Dad started complaining about not feeling well and about having the G-tube. As I was administering his meds into the G-tube, he started vomiting, and this time he was vomiting a lot more than mucus.

By the time that Dianne returned, Dad said that he was feeling better. To ensure that his night was less eventful, I also administered some Zofran into his G-tube. He seemed to be coughing a lot, so we had him move up in the bed, and I raised his head and feet. By 9:30 P.M., he seemed better and ready to go to sleep. I was certainly good and ready to go to bed.

January 24. I got up shortly before 6:30 A.M. and went downstairs to see Dad. I had heard through the monitor that he and Dianne were awake and he was asking her if he was tied up (his reference to being attached to the tube feed). He was feeling good, but he was somewhat grumpy and a little sarcastic. While he and I were exchanging barbs, Dianne left the room to take a shower and get dressed. When she returned, I went to my home office to see if I could make any progress with my loaner PC, which had arrived yesterday from my Houston office.

We all had a nice breakfast together. Mom fixed scrambled eggs, sausage, and English muffins, and Dad had a little of each. While Mom and I attended church, Stan and Dad played cribbage. After lunch, Stan and Dad went out to the garden. They spent about 30 minutes outside and then sat on the patio for about 20 minutes, just enjoying the beautiful weather and each other’s company. Stan was Dad’s welcome relief from being surrounded by a bunch of women who seemed to do nothing but tell him what he could and could not do. By the time that the guys came indoors, it was after 3:00 P.M. and time for Stan to return to Houston.

After Stan left, the four of us watched the Denver Broncos beat the New England Patriots. My parents were diehard fans of the Denver Broncos and were thrilled at their victory over the Patriots. We monitored the game between the Carolina Panthers and Phoenix Cardinals during dinner and our game of Oh Hell. Dianne was a fan of the Panthers, so everyone in the house seemed pleased with the outcomes of the sporting events.

We wrapped up our game of Oh Hell by 8:30 P.M., and by 9:15 P.M., all of were ready for bed. Before drifting off to sleep, I called Stan. He had texted me when he arrived home, but I needed to speak with him every night before I went to sleep.

January 25. I was up by 3:30 A.M. and at work with a cup of hot coffee within 15 minutes. The house was very quiet for the next 2-1/2 hours. I kept the office door closed, but by 6:00 A.M., I heard some sounds coming from Dad’s room. Dianne unhooked him from the tube feed, and Dad got up and got dressed for the day. He wheeled himself into the kitchen and prepared himself a cup of hot water while Mom prepared his Cream of Wheat and ½ pear for breakfast.

While I was working, Dad and Dianne walked around the backyard for about an hour, which gave his legs a good workout.

Brenda arrived around 11:30 A.M. for Dad’s physical therapy session, and she concentrated on his balance, which would be important when he started walking with a cane.

Kristen arrived at 2:00 P.M. for Dad’s swallow therapy session. During this visit, she had Mom prepare a cup of hot coffee for Dad and had him take some sips of it. Once an avid coffee drinker, he now was not very enamored with the taste of coffee. It’s amazing how not eating for a few months can affect your taste buds. Kristen said that as long as he had a clean mouth and remembered to tuck his chin when he swallowed, she felt good about him drinking coffee. She added that on her next visit they would have thin liquids and a snack. Kristen left after only 30 minutes, at which time Dad decided to take a short nap.

In addition to Dad’s normal Monday activities and appointments, today was recertification and assessment day for Dad’s therapies. At 3:00 P.M., Kathleen arrived with Pam, the physical therapy shower aide, in tow. Kathleen reviewed Dad’s balance, walking with the walker, and his ability to transfer into and out of the car. She also had Pam work with me to ensure that I could properly apply the dressing to Dad’s port before he showered. Our aides were both trained, but their time with us was coming to a close, and Mom and I also needed this training. At the end of her time with us, Kathleen certified Dad for another 30 days of occupational and physical therapy. She said that he had great balance and that she would like to see Dad walking independently with a cane at the end of 30 days.

After Kathleen and Pam left, I returned to work until happy hour, and Dad took a nap. After dinner and happy hour, Mom beat us at Oh Hell. It was an early evening, and Dad was in bed by 8:00 P.M. I couldn’t wait to call Stan and give him the good news about today’s events.

Getting better doesn’t always feel like progress

Published on December 19, 2017December 19, 2017 by mellowdee551 Comment

January 18, 2016. I drove to my office in Houston and worked until my lunchtime, at which time I left Houston for Temple. While I was in transit, Brenda stopped by for Dad’s physical therapy session. She suggested that they practice a car transfer, but he told her that he was done with practicing the car transfer. He had transferred in and out of the car several times. Brenda didn’t know it, but we had not always adhered to her guidelines, so she probably didn’t realize that Dad had hit the streets for doctors’ appointments and haircuts following his first successful attempt. However, knowing Dad as she did, she wouldn’t have been too surprised. Dad could be very determined, not to mention stubborn. It was a Locke family trait. Instead of car transfers, Brenda had him work on his balance.

When I arrived at my parents’ home in Temple, Kristen, the speech therapist, was reviewing the dos and don’ts about eating and swallowing. While she was there, I showed her some foods that I had purchased in Houston, which included canned nectars and tomato basil soup. Based on some earlier conversations with Kristen, I had guessed that they qualified as thickened liquids, and she agreed.

For dinner, Mom prepared a chicken and biscuit dinner, and for dessert we had angel food cake, topped with a homemade mixed-berry jam. It seemed that we had deviated somewhat from the “avoid meals of white and red” guideline so that we could distinguish blood from aspirated food in his trach, but we didn’t care. We were pleased that we were able to prepare meals that we could all enjoy together. Just a few weeks ago, Dad would retreat to his bedroom while we ate, coming out when it was time to play Oh Hell. We played the card game again tonight, and Dad won.

While Dad was getting ready for bed, I learned that since I had left on Friday, he had started dressing himself.

Before I went to bed, I needed to move my car from the front of the house to the side of the garage. While I was outside, I noticed a large stack of boxes beside the garage. It seemed that UPS had left my order from American HomePatient out of sight of the street and out of our sight too. After using the hand truck to haul everything inside, I unpacked the boxes and saw that they neglected again to send us the saline and 4x4s gauze sponges that I had ordered two orders ago. These supplies were vital for trach care and I had resorted to having the nurses to bring me gauze sponges during their visits.

January 19. Dad had a very good night, waking only once at 3:00 A.M. to use the Yankauer suction wand. When he woke an hour later, he was in a good mood and had a pretty good morning. He and Michell were ready and waiting for the HOP bus when it arrived early at 5:40 A.M.

When they arrived at the dialysis center, Dad weighed in at 66.4 kg. Because his target weight was 63 kg (139 lbs), the dialysis nurse said that they would remove 4800 ml of fluid. Michell had experienced the last time that the dialysis center removed too much fluid. She strongly objected to this news and had the nurse lower the target to 1800 ml. Michell had changed a lot since she first joined us. In November, she had been shocked when I objected to the guidance of the wound specialist. Now, just two months later, she was standing up to the medical professionals. At the end of his dialysis session, Dad weighed 64.8 kg.

After Dad and Michell returned home, I contacted Sue, our friend and the nurse practitioner at the dialysis center, and questioned her about Dad’s target dry weight. Unlike most of their dialysis patients, Dad needed to gain weight. I was trying my best to get Dad to eat more, yet the dialysis center maintained 63 kg target weight for a 6’1” male. Sue agreed that his case was not typical, and increased his dry weight to 64 kg.

While Sue and I were talking, she told me that Dr. Issac, the nephrologist, wanted to talk with Dad about removing the dialysis port and replacing it with either a fistula or graft. She said that she would schedule an appointment for Dad to see Dr. Jaffers, the surgeon. When I told Dad about the call and the possible surgery options, he seemed to become very depressed. It became clear to me that I did a poor job of presenting this information to him in a positive light, and I spent quite a bit of time trying to convince him that he was doing very well and was making great progress. After talking myself blue in the face, I agreed to drop the subject for today. My parents had been determined that Dad would recover to the point that he would not require dialysis. I suspected that surgery to provide a permanent dialysis vessel was a bit disheartening and not what he wanted to hear.

We played Oh Hell after dinner, and Michell won. Dad still seemed a little down, but not as much as earlier. After Dad had gone to bed, Mom thanked me for what I had said to him earlier today, but I don’t think that anything that I said to him had had any effect. She disagreed and thought that he’d feel better tomorrow.

I wondered to myself if it would help if I told him that I believed that he was on day 258 of a 296-day journey, which meant that he was 87% of the way to being better.

January 20. From what I could hear, Dad slept in until 7:00 A.M. I had meetings that started around 4:30 A.M., and couldn’t take a break from work until 10:00 A.M. I took that opportunity to change Dad’s trach, two days past my self-imposed seven-day cadence. The change went well, and Michell noticed that his stoma was becoming smaller. Svenja, the trach nurse, had switched Dad to a smaller sized trach to enable the stoma to begin healing, and it seemed to be working.

At 11:20 A.M., Brenda and the shower tech, Pam, stopped by so that Michell could learn how to apply the shower shield to Dad’s dialysis port and how to help him transfer in and out of the shower. During the process, Dad also got to take a shower. Dad and his shower helpers were finished with Dad’s shower within 30 minutes, and Michell was certified to assist Dad with showers. After Pam left, Brenda spent the remainder of Dad’s physical therapy time working on his walking and balance.

After his lunch of ham and turkey on an English muffin, Dad and Mom worked on some of their finances while I worked. The office seemed just a tad smaller with the three of us in such tight quarters.

At the stroke of 2:00 P.M., Kristen arrived for Dad’s swallow therapy. As she was getting ready to leave, Dianne arrived to relieve Michell. Usually, the aides switched out around 10:00 A.M., but because Michell had had car trouble last week and arrived a few hours late, she had told Dianne that she would stay late today.

Shortly after Dianne arrived, Mom went to the grocery store. When she returned, Mom, Dad, and I got into the car and drove to the church. I was still intent on taking Dad back to church on Valentine’s Day, and I thought that we needed at least one practice run. During the ride there, I shared my plan for his recovery and how I believed that by the time the 296 days were up (148 days of hospitalization and 148 days of home care), he would be ready to be mainstreamed. We all agreed on a plan, but he added that he wanted to end the live-in aides in three weeks. I told him that if he used them to help him exercise, we could terminate our relationship with One On One Personal Home Care. As long as we had the aides, we might as well get out money’s worth from them. He seemed to be onboard. I hoped that this little talk would inspire him to exercise more.

At the church, Dad got out of the car, and we walked part of the way to the door. He became a little winded, but we still had enough time to practice a couple more times before the big day.

For dinner, we ate spaghetti, still one of my favorite comfort foods, and then Dad beat us at Oh Hell.

January 21. Dad woke up at 3:30 A.M. to use the toilet and was ready to get up, but his plans were dashed when Dianne told him that he would stay in bed for another 30 minutes.

Mom was up before 4:00 A.M., and I met her in the kitchen when I made coffee. With the assistance of his walker, Dad went into the closet to select his clothes, and then he dressed himself. After dressing, he wheeled himself into the kitchen and joined Mom for a cup of hot water, which he referred to as weak coffee. Her coffee was somewhat stronger.

When he finished his breakfast of Cream of Wheat and honey, with a peach on the side, I administered his morning meds and trach care. We negotiated the morning routine like a well-oiled machine, and the HOP bus arrived moments after 6:00 A.M.

While Dad and Dianne were at the dialysis center, I called Gale. I subtly implored her to return for one or two rotations. We would be ending our relationship with One on One Personal Homecare Services soon, and I wanted to see her again, if not for work, then for dinner. Gale would not commit to returning to work, but she agreed to come back for dinner. To get the rotation of aides to align with when I wanted to host dinner for Michell and Gale, I might need to get Michell to stay for a two-week stint. I didn’t want to hurt Dianne’s feelings by excluding her from the dinner, but Michell and Gale were by far our favorite aides.

Dad weighed 66.4 kg when he arrived at the dialysis center. After having 2200 ml of fluid removed, he left weighing 64.4 kg. Dianne and Dad returned home at 11:20 A.M.

We had turkey sandwiches and Fig Newtons for lunch, and then Dad took a nap. After the loss of 2200 ml of fluid, he was feeling pretty punk. He said that he’d rather not gain weight if it meant having so much fluid removed. I explained that we’d work with Sue to ensure that they gradually increased his dry weight. She had just adjusted it a couple of days ago, so it seemed a bit premature to ask for another adjustment.

After sleeping for a couple of hours, he started feeling a little better, and by happy hour he was feeling more like his normal self. After dinner, we played cards, and I was tonight’s big winner. We were finished with cards and starting our nighttime routine at 7:50 P.M. Within 30 minutes, he was in bed and sleeping, and he slept well all night.

Rest stop on the road to recovery

Published on December 12, 2017 by mellowdee55Leave a comment

January 17, 2016, marked the 255th day of my Dad’s healthcare odyssey. Now seemed like a good time to take a timeout to review some of the major challenges of his journey. Also, I’m taking a bit of a timeout myself to prepare for Christmas 2017. I’ll continue with Dad’s healthcare story in my next post.

May 6, 2015: Dad enters the hospital for arterial valve replacement. The procedure went well.
May 15, 2015: After my mother returns home from a day at the hospital visiting Dad, she suffers a stroke. Now both of my parents are in the hospital.
May 18, 2015: Instead of being discharged from the hospital, the doctors inform me that Dad has bacterial pneumonia and severe sepsis with acute organ dysfunction. The drugs won’t be able to address the infection so the surgeon will reopen Dad’s chest to wash out the infection. Mom is discharged from the hospital, but cannot be alone for a period of 30 days.
May 28, 2015: Dad’s kidneys are starting to fail. Today is his first day of dialysis.
June 8, 2015: Dad has a tracheostomy.
June 25, 2015: Dad is transferred from Scott & White Memorial to Scott & White Continuing Care Hospital (CCH).
July 14, 2015: Dad is transported to the X-Ray department at S&W Memorial for an MBSS, which would assess his ability to swallow. Unfortunately, the test that we had yearned for yielded some disappointing results. In short, he was diagnosed with a high risk for aspiration. Adan, Dad’s speech therapist at the CCH plans to continue working with Dad.
July 15, 2015: On Dad’s 71^st day of hospitalization, he and Mom are told that Dad cannot be discharged from the CCH until he is deemed to be dialysis dependent. To obtain that diagnosis, he would have to be hospitalized and on dialysis for a total of 12 weeks.
July 22, 2015: Dad aspirates on his tube feed during dialysis. Early the next morning, the doctor calls my parents’ home to tell me that he can’t do anything more for Dad. He could have Dad transferred back to S&W Memorial hospital, but due to Dad’s age and illness, we’d probably opt to let him die.
July 30, 2015: The doctors tell Mom and me that Dad’s situation is grave and that he has no more than a 10% chance of survival. Two days later, the doctor increases Dad’s chances for survival.
August 7, 2015: Nurses start administering antipsychotic drugs to control Dad’s agitation.
August 13, 2015: Dad’s 100^th day in the hospital. Dad’s delirium now causes him to be restrained most of the time that Mom and I are not with him.
August 19, 2015: Dad gets his speaking valve and the pulmonary fellow requests a meeting with Mom and me to consult with us about Dad’s bleak future.
August 20, 2015: Dad is discharged from S&W Memorial to the CCH.
September 1, 2015: Dad’s delirium seems to be worsening, prompting the nurses to keep him restrained.
September 8, 2015. We’re becoming concerned about Dad’s Medicare hospitalization coverage, which will expire in 23 days.
September 18, 2015: It’s been 136 days since Dad’s surgery and the attending physician tells Mom that Dad has Candidiasis and will die. We are told to make nursing home or hospice arrangements.
September 24, 2015: We switch gears from preparing for hospice to preparing for home care. The nurses start training me to be a caregiver.
September 29, 2015: On Dad’s 148th day in the hospital system, and two days before Dad’s Medicare coverage is due to expire, Dad is discharged from the CCH to home care. The struggle to return home is successful, but Dad’s journey is far from complete.

Killing fire ants: continued progress during caregiver respite

Published on December 5, 2017December 6, 2017 by mellowdee551 Comment

January 16, 2016. It seemed that Dad had had a great night’s sleep, and from all accounts, he woke up feeling chipper. Starting a few days after his return home, every morning, Dad would tell the aides what he wanted to wear and where they could find the clothes in his closet and dresser drawers. After gathering his clothes for the day, they would then help him dress. Today, Dad started dressing himself. To ensure that he was safe from falling, Michell remained nearby while he dressed. By 5:30 A.M., Dad and Michell had eaten breakfast and were ready and waiting for the HOP bus to transport them to dialysis.

After Michell and Dad returned from dialysis, she restarted his tube feed at the slower rate of 55 ml/hour. Julie, the gastroenterologist dietitian, had suggested a faster rate, but Michell and I had agreed to administer the Nepro at the slower rate until Dad went at least a couple of days without feelings of nausea. Meanwhile, it seemed that Dad’s appetite had returned, and he ate tuna with a toasted English muffin and a little applesauce.

After lunch, Michell administered the trach care and midday meds. Her willingness to handle Dad’s trach care had enabled my return to Houston the previous day for a short visit, although I knew that the procedure made Michell very nervous.

When Dad woke up from his afternoon nap, he told Michell that his throat felt scratchy, similar to the way it had felt yesterday before he vomited. Michell wasn’t sure what to do, but Dad agreed to chew on some ice chips to see if that helped his throat, or perhaps his stomach, to feel better. The scratchiness seemed to disappear, and Dad didn’t get sick.

Mom felt very encouraged about Dad’s good spirits today and asked Michell if she could help to get Dad into the sunroom for happy hour. Although she did assist Dad into the sunroom, she probably could have literally carried him, considering her strength and his extreme weight loss.

Mom, Dad, and Michell played a game of three-hand Oh Hell, and they agreed that the game was better with four or more players. By 8:00 P.M., Dad was getting ready for bed. After yesterday’s bouts of coughing and vomiting, Dad seemed to have had a good day, and the secretion reservoir did not show any signs of aspirated food particles.

January 17. Dad had another restful, uneventful night and slept until 6:00 A.M. By 6:15 A.M., he had identified the clothes for Michell to gather for him, and he was at the bathroom sink getting washed up for the day. For breakfast, Dad had 1-1/2 English muffins, a soft-boiled egg, and some home-made jam. The egg and muffin breakfast reminded me of the October morning shortly after Dad had been discharged from the CCH. He had wheeled himself into the kitchen and asked Mom if she would fix him a soft-boiled egg. At that time, he couldn’t eat anything and we weren’t sure if he’d ever be able to eat.

While Mom attended church, Dad and Michell strolled around the yard and inside the house. While outside, Dad noticed some large fire ant beds. Fire ants are a nuisance and somewhat of a danger for those of us who live in warmer climates. Back in the days of being an able-bodied person, he had kept a close eye on pesky insects, such as wasps and fire ants.

Dad had become accustomed to playing cribbage on Sundays, but this weekend, his cribbage buddy was in Houston with me. Fortunately, Michell had agreed to learn the game, and she and Dad played a game before their lunch of grilled cheese and angel food cake.

After lunch, Dad was on a mission to get rid of the fire ant mounds that he found during his morning walk. With a little assistance from Michell, he went out to the garage, grabbed a trowel and the ant poison, walked back through the house and out the patio door to the backyard. Dad dug some dirt from the top of the mound and then treated the mound with the poison. The danged ants probably recolonized a few feet away, but this mound was just below the kitchen window, and he wanted to get rid of it.

All of the walking and ant killing had tired him, and by 3:00 P.M. Dad was ready for a short nap. When he woke up at 3:30 P.M., he astonished Michell by asking for a cup of ice. He wasn’t a fan of the crushed ice and often complained that it made his mouth exceptionally cold.

Mom and Dad had lived in Grand Junction, Colorado, for 21 years, and they were both still fans of the Denver Broncos football team. Dad had specifically requested that he be awakened from his nap at 3:30 P.M. so that he could watch the Broncos beat the Pittsburgh Steelers. During the game, he snacked on green grapes.

After his big lunch, the Nepro tube feed, and some grapes, Dad wasn’t very hungry for dinner, but he did eat some green beans and ice cream. Even if he wasn’t very hungry, he rarely skipped dessert.

The three of them played cards again tonight and at 8:45 P.M., Dad started heading to his bedroom to start his nightly routine. He had now had a couple of good days in a row under his belt, and Michell hoped for another night of rest.

I was relieved that Dad had fared well while I was gone. After the fall that he had had during my absence in December, I was all in favor of uneventful days and nights.

Finally! A proper toilet and a trip to the barber

Published on November 28, 2017 by mellowdee551 Comment

January 12, 2016. Shortly after 1:00 A.M., Dad’s incessant itching woke him and he told Dianne that he wanted to take a shower, which was not permitted without the assistance of a physical therapy aide. Instead, Dianne applied more anti-itch lotion, which enabled him to fall asleep again. By 4:00 A.M., the Kangaroo alarm had sounded and woke Dianne, who then woke Dad.

By 4:30 A.M., with some assistance from Dianne, Dad had washed his face, brushed his longish hair, and was dressed for the day. Keeping with his normal routine, he wheeled himself to the kitchen and read some of the newspaper while Mom prepared his breakfast of Cream of Wheat with honey and a small bowl of peaches and pears. He was finished with breakfast and ready to go long before the HOP arrived at 6:00 A.M.

His secretions had decreased significantly. The reservoir on the suction machine had measurement markings, and it might sound a little disgusting, but Dad’s secretions now measured less than 1/2 cup per day, which was a fraction of earlier quantities.

Now that Dad could transfer in and out of the SUV, Mom scheduled appointments with the hearing aid center and the dermatologist. She told me that Dad also wanted to see the barber on Thursday. He was usually a little weak on Thursdays because of dialysis, so strength-wise, Wednesday would have been a better day, but his Wednesday dance card was already filled with nurse and therapist appointments.

Dad and Dianne returned home from dialysis shortly before noon. Dianne told me that his check-in weight had been 64 kg and 62.8 kg when he left. After pulling out my calculator and converting kilograms to pounds, it appeared that he had gained a couple of dry-weight pounds. I didn’t want to tell Dad about his weight gain for fear that he’d quit eating so that he wouldn’t get fat.

Mom had prepared grilled cheese sandwiches, a comfort-food favorite, and V-8 Juice for him for lunch, and he ate it without a thought about his weight. He had had 1,500 ml of fluid removed during dialysis, and he was tired. Whenever Dad napped, Dianne took advantage of his downtime and also took a nap, and they both slept for a couple of hours.

During dinner, Dad’s appetite didn’t disappoint. He ate hot dogs, beans, and a couple of crescent rolls for dinner.

After our nightly game of cards, Dianne and I were finished with Dad’s nightly meds and trach care by 8:15 P.M., and by 8:30 P.M., he was sleeping. An hour later, he started coughing, but Dianne was able to get him to suction himself, and he was soon sleeping again.

January 13. When I woke up at 3:30 A.M., I heard Dad tell Dianne that he wanted to go to the little room, which was how he referred to the room that housed the proper toilet in my parents’ master bathroom. During his last visit, Stan had installed grab bars in the little room, enabling Dad to finally use the proper toilet in that bathroom. Dianne responded to Dad’s request by asking why he wanted to go to the living room. He wasn’t wearing his hearing aids, and she couldn’t understand him, so this insane exchange about the little room and living room lasted until I came downstairs and interpreted for them. They both laughed and agreed to refer to this room as the small room. After Dianne helped him back to bed, they both went back to sleep.

Mom had been successful at scheduling an early appointment today with the dermatologist and had to wake Dad and Dianne at 6:00 A.M. This trip to the dermatologist would be his first excursion in the car since May 6, 2015.

While getting dressed, Dad’s dialysis catheter dressing fell off. Unbelievably, Dianne picked it up off of the floor and put it back over his dialysis ports. When I heard what had happened, I had her remove the soiled dressing, and I called the dialysis lab and spoke with Dad’s nurse. The nurse told me that he could stop by the dialysis lab at any time today to have the dressing replaced.

After Mom, Dad, and Dianne returned home from the doctor and the dialysis lab, I told Dad that he needed to eat something. He had been off of the tube feed since 4:00 A.M., and had only eaten 85 calories worth of food. He finally agreed to eat 1/4 cup each of cottage cheese and applesauce. This paltry amount wouldn’t make much difference, but at least he agreed to eat something. When he ate only a portion of each, I told him that he needed to eat more, which prompted an argument. After exchanging a few harsh words, he said: “Melody doesn’t really care if I’m around or not.” Dianne, who had been present during our little exchange, had the good sense to hightail it out of the kitchen before my anger exploded. I grabbed the arms of his wheelchair, and I shook it hard and long while shouting, “How dare you say that to me!” The shouting brought my mother to the kitchen to see what we were arguing about now. I gave her the condensed version and stormed out of the kitchen to the office.

I stayed mad at him all day and was glad that I could stay in the office and work. When Brenda arrived at 10:30 A.M. for Dad’s physical therapy session, she informed us that Pam, the shower aide, would be arriving in a few minutes to help Dad with his shower. This shower session had been scheduled to train Michell how to help Dad with a shower but Michell had had car trouble and had not yet arrived, which annoyed Brenda. This shower session was somewhat less of a fire drill than his first shower, and I think that soap might have been involved this time. After lunch, Janet stopped by for Dad’s occupational therapy session, and Kristen stopped by at 2:00 P.M. for the swallow therapy session.

After dinner, I told Mom that I needed to prepare either tonight or tomorrow for my trip home on Friday. She said that I should make my preparations tonight, which meant that she was canceling tonight’s card game. My parents have a high-efficiency washing machine, and like most of these machines, they’re prone to mold. After using it, I mentioned to her that I had noticed some mold on the seals. In response, she told me that she didn’t like my attitude. I was becoming more eager to leave here with every passing hour.

After Dad got into bed, he started coughing hard and then started vomiting. The vomiting didn’t last very long and he seemed fine. He fell asleep until 10:00 P.M., when his coughing woke me, and I went downstairs to his room. I notice that his red cap was missing. Once again, he had blown off his red cap while coughing. Luckily, I had a few clean ones on hand. I suctioned him again, and I became worried when I noticed the pink color of the secretions in the suction tank. During dinner, Dad had eaten some strawberry ice cream and I feared that he had aspirated some of it. When I tried to take his hand to check his oxygen saturation, he grabbed my hand and held on to it, and I melted. I guess only the ones who you love the most can provoke such opposing emotions in the span of a few hours.

While he had been vomiting, his heart rate had reached 141, but his oxygen saturation stayed about 95% and his temperature remained normal. After his coughing subsided and his vitals were normal, he was ready to go back to sleep, and so was I.

January 14. Dad woke up before 3:30 A.M. and was ready to get up and get the day started, not seeming to have suffered any ill effects from last night. He ate a little breakfast and was ready and waiting for the HOP bus to take him to dialysis.

I had logged on to work around the time that Dad woke up, and my morning was full of scheduled meetings. Michell and Dad arrived home from dialysis around 11:30 A.M. and had already eaten lunch by the time that I was free for lunch.

Although Dad seemed to be in a good mood, he was coughing a lot more today. He was tired from dialysis and wanted to take a little nap, but he insisted that he be awakened by 2:00 P.M.

As instructed, we woke him at the appointed time, and he prepared himself for his second excursion in the family SUV, this time to the barber shop. His barber said that he had wondered what had happened to him. The last time that Dad had seen the barber, Dad told him that he was going to the hospital for some surgery. The barber did a great job on Dad, transforming him into his former well-groomed self.

Shortly after returning home from the barber, Dad said that he wasn’t feeling well and wanted to lie down again. He slept for another hour and Michell woke him just before 5:30 P.M.

Because of his coughing spells today, I decided to resume the saline breathing treatments for at least for a day or two. His secretions seemed to contain some “solids,” which was somewhat disturbing. After the breathing treatment, he started coughing hard again, blowing off the red cap. The way that that red cap flew off of the trach reminded me of a cork flying off of a champagne bottle. After his coughing spell, his oxygen saturation level was 99%, higher than it had been since the day that he was red-capped, so it seemed that his cough had been productive.

January 15. Dad slept most of the night and started coughing around the same time that my alarm sounded. By the time that I got downstairs to his room, he was sleeping again. After working a little over two hours, I heard Michell and Dad talking in the other room, and I stopped for a few minutes to see how he was doing.

As soon as he was up and moving around, he started coughing a lot, and his secretions still looked like they contained solid material. Concerned that he might have aspirated some of last night’s dinner, I texted Kristen. (I don’t know what I would have done without text messaging. It saved so much time so many times and alleviated so much worry.) She replied, saying that some of the solid material in the tank could have come dislodged from pockets in his mouth, and that she didn’t think that he exhibited any of the symptoms of silent aspiration.

Mom and I talked about finding another primary care physician for Dad—one that was part of the Scott & White network. We spent some time online looking for physicians and called the office of our neighbor and doctor, Barbara, to see if she was still taking new patients, but we had to leave a message. We had not received a return call or email by the time that I left for Houston.

Mom and Michell took Dad to the hearing aid center to see the audiologist. She adjusted the volume of Dad’s hearing aids and cleaned them. They returned from their excursion in time for lunch. Dad ate another good meal of a ground roast beef sandwich, tomato juice, and fruit for lunch. Because of its consistency, tomato juice is considered a thick liquid, so Dad was permitted to drink as much of it as he wanted without having to thicken it.

Shortly after I left Temple for Houston, Stephanie, the nurse, arrived. She told Mom and Michell that Dad’s lungs sounded like they were clear, and that he seemed to be doing fine. When she left, Michell coached Dad through his occupational and physical therapy exercises, and then he walked a little on the front porch of the house.

A little after 2:45 P.M., Dad started coughing hard and then started vomiting. Fortunately, I guess, he vomited only tube feed and did not lose his lunch. After a few minutes, he said that he felt better and that he wanted to take a nap.

I arrived home shortly before 4:30 P.M. When I called my mother to tell her that I had arrived, she told me about the events of the afternoon. I spoke briefly with Michell and had her give Dad a Zofran pill for his nausea and cut back on the rate of his tube feed. We had increased the rate from 55 ml/hour to 130 ml/hour. The dietitian at the gastroenterologist’s office had assured me that this rate shouldn’t cause a problem, but all evidence pointed to the contrary. He needed the Nepro to supplement his dietary intake, but he wouldn’t get it if he kept vomiting.

It was good to get home to what seemed like a parallel universe. I don’t know how I would have survived without these periodic respites to Houston and I wondered how so many caregivers—primarily women—did.

Capturing the elusive red cap

Published on November 7, 2017 by mellowdee554 Comments

January 1, 2016. A couple of minutes after midnight I heard grunting, sounds coming through the baby monitor. When I went downstairs to check on Dad, he said that he needed to get up now. As I started to unhook his feeding tube, I asked him why he needed up. He said that he was annoyed because he had overslept and had missed the Rose Parade. When I explained to him that it was midnight and not noon, he looked relieved and smiled. As long as I was there, I suctioned his trach, and after we wished each other Happy New Year, I was on my way back upstairs by 12:45 A.M. He had had a lot of secretions, so I was grateful for the false alarm.

At 6:00 A.M., I heard Dad and Michell talking and decided that it was time for me to get up to administer Dad’s morning meds and breathing treatment. His secretions seemed a bit thinner now, but his oxygen saturation was still too low for me to consider lowering his oxygen.

As I had learned at midnight, Dad’s big plan for the day was to watch the Tournament of Roses Parade, a New Year’s Day tradition. However, the parade wouldn’t start for almost three hours, which allowed him time for a delightful breakfast of green oatmeal, and some walking and sink exercises. The best place to watch the parade was in my parents’ sunken sunroom. Stan, Michell, and I spent a few minutes working out the logistics for getting him out of the wheelchair, down the step and transferred back into the wheelchair so that he could continue receiving tube feed and oxygen without damaging the floor. It seemed like it should be a simple maneuver, but Dad’s tubes and wires complicated his already-limited mobility.

Tracy, the nurse, dropped by at 1:00 P.M. and said that although Dad was still suffering from the effects of his cold, she thought that we were doing everything right. At 2:00 P.M., Kristen arrived for Dad’s swallow therapy. I was continually impressed by the home-care caregivers as they kept up their regularly-scheduled visits during the holiday. I had worked in corporate America for more than 20 years, and only the newest employees worked around, let alone on, the holidays.

Dad was still very congested today. Before we played cards, I had to suction him so that he could enjoy our game. By 8:30 P.M., the first day of 2016 was just about over. After I administered Dad’s meds and a breathing treatment, I treated myself to a breathing treatment to combat my own chest cold. I had never used a nebulizer and was surprised at how well it was clearing up my congestion.

January 2. During the night, I heard coughing and talking through the baby monitor. Dad’s secretions had kept him awake, but Michell was able to convince him to suction himself. Michell was concerned when she saw blood in his secretions, but attributed the blood to a nosebleed that he had had a few hours earlier.

When Michell helped Dad out of bed at 5:00 A.M., I also got up, and after changing into my scrubs, I went downstairs to see how he was doing. After administering a breathing treatment, the morning meds, and letting Dad wash his face and brush his teeth, Michell washed his hair with some no-rinse shampoo. Before Gale had left us, she had encouraged me to purchase some no-rinse shampoo, but I couldn’t find it in our local stores. I finally found it online on December 26, and it had arrived a couple of days ago. I was pleasantly surprised at how well it worked.

After Dad was as clean as Michell could get him without a shower, we all ate breakfast together. Mom prepared Dad a special breakfast of Cream of Wheat topped with a couple of peach slices. When we finished breakfast, I administered another breathing treatment, and then Mom and I went shopping in Waco, approximately 35 miles north of Temple, leaving Stan and Dad to play cribbage and stay out of mischief until our return at 1:00 P.M. Between Dad’s long hospitalization and Mom’s stroke, Mom had lost a lot of weight and needed some new clothes. The shopping trip also gave us a much-needed respite and a chance to spend some time together.

After Mom and I returned home, I ran a few errands in Temple and picked up another prescription for Dad. Before I left, I told Dad that I would change his trach when I returned, but by the time that I had returned, he was sleeping. Not to be deterred from my goal, I changed his trach as soon as he woke up. In the seven days since I had last changed it, it had become pretty gunky, but the secretions had not solidified in the trach. Dad hated to stay in the bedroom, which was the only place where he received the moistened oxygen. I often worried that secretions were hardening in his trach, which would then narrow his airway.

Dad never kept the outside Christmas decorations up past New Year’s Day, and he was chomping at the bit to have them taken down. With the assistance of Stan and Michell (the tallest person in the house), Dad had the decorations removed and packed for next year.

Now that Dad was able to eat, Mom and I tried to come up with menus that were appealing to everyone in the house. We also had to ensure that the food was not red or white so that I could monitor Dad’s secretions for signs of aspiration. Mom wanted a side dish to accompany the roast that she planned for dinner. I reminded her that many trendy restaurants offered mac-and-cheese as side dishes. Not only was mac-and-cheese tasty, but it was also orange. Keeping with the orange theme, Mom also made butterscotch pudding for dessert. As we had hoped, Dad was able to eat the mac-n-cheese and pudding.

After dinner and our daily game of Oh Hell, I gave Dad another breathing treatment of albuterol. This treatment seemed to kick up his secretions, and I had to remove a lot of secretions before he went to bed.

Shortly after Stan and I went to bed, we heard an exchange between Dad and Michell through the baby monitor. Evidently, Dad was itching so much that he agreed to let Michell give him a mini sponge bath. More startling than him agreeing to the bath was that he agreed with her that he should have let her do it several days ago when she first suggested it.

January 3. When the alarm went off at 3:40 A.M., I could barely drag myself out of bed, and Michell was also forcing herself to get up. After walking around like a zombie for about 30 minutes, I finally woke Dad at 4:10 A.M. I wanted to let Mom sleep, so I fixed him a breakfast of Cream of Wheat and peaches. To ensure that I fixed his breakfast as Mom would, Dad monitored and corrected me while I prepared his meal. After breakfast, we were able to squeeze in a saline breathing treatment before the HOP bus arrived to take him to dialysis.

While Dad and Michell were at dialysis, Mom and I went to church. When we returned home at 12:30 P.M., we found Dad and Stan involved in a game of cribbage. After Dad played a most spectacular hand and beat Stan, we had lunch. Dad ate only a small portion of applesauce, so I was glad that he was still receiving Nepro. Dad had lost so much weight that we, and the dietitians, could not justify reducing his Nepro.

As soon as lunch was finished, Stan returned home to Houston. The holidays were over, and tomorrow was the first working day of the new year. Dad was ready for a nap, but because of his aspiration precautions, he could not lie down for an hour after eating. Because he had to sit upright, he decided to go into the sunroom to watch the Texans football game. Michell and I were getting better at this transition. We still hadn’t told the physical therapist that we were letting him step into this room. By 3:00 P.M., the football game finally lulled him into a drowsy state while sitting in his chair. Before he fell asleep, we helped him out of the sunroom and into his wheelchair so that he could go to his room for a nap.

I woke Dad at 4:30 P.M. so that I could administer some meds and a breathing treatment before happy hour. Unfortunately, our happy hour was anything but happy. I don’t remember how it started, but we had a terrible argument about his exercising. Lately, Michell had been unable to get him to exercise, and he made it very clear that he would exercise when and if he felt like it, and it wasn’t doing any good anyway. We had a terrible argument about this, his new lot in life, and my new terse way of talking to him. The primary reason that we had hired aides to assist us was to ensure that we could maintain some semblance of normal familial relationships. When a family member changes roles from child or spouse to the caregiver, it can strain normal relationships. I had been responsible for taking care of him for a few months and had been his uber-advocate during his hospitalization. Now that he was getting better, he was beginning to resent my telling him what to do. The more that he angrily pushed back on my efforts to care for him, the more ready I was to pack my bags and go home. Following our exchange, I heard Dad tell Mom that “she was the only one that mattered.” I was beginning to feel a bit unappreciated.

I had prepared a salmon casserole for dinner, which Dad was able to eat. My parents have a fig tree, and during the summer Mom had made some fig jam, which Dad enjoyed for dessert. Everything seemed very civil for the rest of the evening, but I was still a bit miffed.

No amount of arguing would keep us from playing Oh Hell after dinner. When we finished playing cards, Michell and I administered his meds and breathing treatment, and Dad was ready for bed by 8:30 P.M. From what I heard through the baby monitor, Dad needed the Yankauer suction wand around 10:30 P.M., but I didn’t hear him again that night. During my regular call with Stan, I unloaded my frustration about my situation here and my desire to leave. At the end of our call, I was somewhat less agitated.

January 4. Today was the first working day of 2016, and I was up and logged on to work before 4:00 A.M. Today was an important day for Dad, and one that I had been looking forward to and nervous about for a couple of months. The appointment with the pulmonologist was very important, although I didn’t think that Dad realized its importance.

Tracy, the homecare nurse, stopped by at 9:15 A.M., and said that Dad’s lungs were clearer, so it seemed that the breathing treatments that she had recommended had helped. I took a break from work at 11:15 A.M., and the four of us had a quick lunch. Shortly after lunch, the HOP picked up Dad and Michell; Mom and I followed the bus to the clinic for Dad’s 1:00 P.M. doctor’s appointment.

When we were ushered into the examination room, Dad’s world began to change. After Mom and I provided a short update on Dad’s condition and treatment since his discharge, Dr. Badri Giri said that he was surprised that Dad had not seen Svenja (the trach goddess), or anyone else in the medical profession, about the trach. He immediately paged Svenja for a trach consult. Although she was available, she was about as far from us as she could be while still on the hospital grounds, but would be there within 10 minutes. While waiting for Svenja, Dr. Velazco stopped by, and there were hugs all around. Dr. Velazco, another pulmonologist, had not seen Dad since late August, and he was thrilled to see how Dad’s condition had improved. The hugs continued when Svenja arrived. She and I spent a few minutes catching up and then she started to check out Dad’s trach and stoma. I respected and liked Svenja and was nervous that she would find a problem that was related to Dad’s care. When she said that Dad’s stoma looked good, I exhaled the breath that I didn’t realize that I had been holding. After she and the doctor conferred for a few minutes, they decided to downsize Dad’s trach from a size 8 to a size 6 trach, which meant that the outside diameter of the trach was smaller. The smaller diameter would still be large enough for us to keep using our FR14 suction kits and would enable the stoma to start closing. She deftly replaced the trach within a few moments. Svenja and the doctor had considered removing the trach but decided to wait about a month until he completed more swallow therapy. Instead, she red-capped the trach, which meant that Dad was now breathing through his nose and not the opening in his trach. Dad had not breathed through his nose since June 8, 2015, almost six months earlier. On the way out, we saw Dr. Hayek in the hall and stopped to say hello to him. Dad had no recollection of Svenja and Drs. Hyack and Velazco, but these three health care providers had been important players in Dad’s recovery at Scott & White Memorial, especially after he aspirated in July. On our way out, we scheduled Dad’s follow-up appointment in February.

We returned home from the doctor’s appointment at 3:00 P.M. Michell was able to engage Dad in some swallow-therapy exercises, and I logged back on to work for another couple of hours.

The red-capped trach introduced many changes in our lives. For starters, we no longer needed the very noisy and heat-generating oxygen concentrator and attached nebulizer. We also would not need to use the oxygen tanks. The difference in Dad’s bedroom was startling, starting with the quiet, which was almost deafening. The temperature dropped at least five degrees, which would be a welcome change for the aides, who sweltered during the night. I would still need to administer trach care, which included changing out the trach every week and checking for aspirated food particles in his secretions. The smaller diameter of the trach would make handling secretions easier for Dad, too. When I checked Dad’s oxygen saturation, it was 100%!

We were all in much better spirits during happy hour and dinner, not to mention cards. Once again, I was practically giddy with excitement about Dad’s progress, yet on edge that something would happen that would cause Dad’s condition to regress.

After our full and exciting day, Michell and I administered Dad’s meds and trach care, and he was drifting off to sleep by 8:15 P.M. After the wonderful events of the day, I couldn’t wait to call Stan to share the good news.

Two bad colds, and a partridge in a pear tree

Published on October 24, 2017 by mellowdee55Leave a comment

December 25, 2015. At 3:45 A.M., I was awakened again by the gurgling sounds coming through the baby monitor, and hurried downstairs to check on Dad. As was the case yesterday, his speaking valve had come off and secretions were running out of the trach and onto his chest. I suctioned his trach, changed his dressing, and got him cleaned up. As Dianne was helping Dad change into a dry nightshirt, we noticed blood on his blanket. We quickly discovered that he was bleeding from his elbow. His fragile skin was susceptible to skin tears, and he often got them by just rubbing against fabric. We cleaned up the blood and bandaged him, and helped him back into bed. He then used the Yankauer wand to suction himself. Fortunately, his secretions were not as bad as they had been last night. While I was in his room, I took his temperature, which was slightly elevated again. By 4:15 A.M., Dad was drifting back to sleep and I was headed upstairs to bed. I slept until 6:45 A.M., when I was awakened by the sound of him coughing. I also heard Mom in the kitchen. It was Christmas morning, so I thought that I should get up and join her. Historically on Christmas morning, I was the one who leapt out of bed before dawn, turned on the lights on the tree, and started the music and the coffee, and hollered for everyone to get up, but I was really dragging this year because of this awful cold.

While I was finding my first cup of coffee, Dianne tried to interest Dad in a sponge bath, but he wouldn’t entertain the idea. During recent physical therapy sessions, he had practiced transitioning in and out of the shower, and he would have a “proper” shower after the holidays. Unfortunately, while he was holding out for a proper shower, he was accumulating several layers of dead skin, which caused flakiness and bumps to appear on his extremities. When I returned to his room to see how he was feeling, he said that he felt better than yesterday, but he wavered a bit when I helped him transition to his wheelchair.

Before I left his room, he instructed me to get out his red shirt and gray-blue trousers for Christmas. I was already wearing a red shirt and was encouraged that he wanted to wear his traditional Christmas attire. He and I weren’t feeling festive, but we still wanted to look the part.

After we all opened our presents, Mom, Stan, Dianne, and I enjoyed our family’s traditional breakfast of Christmas morning loaf and bear claws. After tidying the kitchen somewhat, I accompanied Dad as he wheeled himself from the bedroom to the sunken sunroom where we had the tree. Stan and Dianne helped Dad step down into the sunroom and over to a chair—a real chair and not the wheelchair. My parents and husband had long since resigned themselves to my insistence on our traditional family photo session on Christmas Day, but no one seemed to mind it this year. I usually came armed with fancy hats or other props, but this year I was just happy that our Christmas photo included the four of us.

After all of the excitement of opening packages and navigating the step to the sunken sunroom for photographs, Dad was ready for a nap.

After Dad woke up, he and Stan played several hands of cribbage, and Stan finally won, which was a major feat as Dad was darn good at the game. Dad was still fighting a chest cold and Stan was fighting a migraine, so they were both ready for naps when they finished their grueling match. Mom and I didn’t want to take naps, but we eventually fell asleep while sitting on the couch.

By the time that happy hour rolled around, we were all awake. Dad snoozed during our dinner and joined us for a rousing game of Oh Hell, in which he tied with Dianne for first place. His temperature had been slightly elevated today, but not enough for me to call the after-hours home care nurse.

December 26. Shortly before 1:00 A.M., the grinding sound of the suction machine blared through the baby monitor. After a few minutes, it stopped, but started again at 1:45 A.M. Dad resisted suctioning himself during the night, so I knew that he must be suffering. As soon as I entered his room, I checked his vitals; his oxygenation levels were borderline and his temperature was 99.6 degrees. I suctioned his trach and removed some very thick secretions. As much as I knew that he would hate it, I told him that I had to remove his speaking valve because it was restricting some of the oxygen intake.

Removing the speaking valve meant that he couldn’t call out for help, so I returned to his room a couple of more times before 4:00 A.M. to check on him, and then stayed with him until he woke up.

When he and Dianne were awake, I went to the kitchen for some coffee and to visit with Mom. I checked on Dad again and suctioned his trach, and then returned to my bedroom. Stan was just waking up, and I asked him to let me sleep for another 30 minutes and then wake me so that I could administer Dad’s meds. When I knew that Dad was up and about, I went back to bed and slept until 9:00 A.M.

After I had been up for awhile, Dad wheeled himself into the kitchen and thanked me and apologized for keeping me awake for most of the night. I told him that I would accept his thanks but not his apology. He could not help being sick any more than I could, but I couldn’t sleep if I knew that he was suffering and unable to help himself. As much as I liked having the aides in his room, we had hired quite a few sound sleepers. They often didn’t wake up until after I entered the bedroom.

Stan had purchased a turntable that could convert LP recordings to audio files. My parents have a large collection of 78 RPM records that Stan wanted to save, and he and Dad spent the remainder of the morning trying to get it to work. We were much more successful getting Dad to eat ice and walk around the house than recording music. Dianne was also able to interrupt the post-holiday festivities to get Dad to practice his swallowing exercises.

After lunch, Dad was ready for a nap. A cold front was moving through the area and weather changes usually triggered migraines for Stan, so he also took a nap. When Dad woke up from his nap at 2:30 P.M., I changed out his trach.

He and Stan played a couple games of cribbage, each winning one game. We were able to get Dad to consume one cup of crushed ice during happy hour, which made three cups for the day. I kept reminding Dad that Kristen had told us that nothing improved swallowing more than swallowing. After dinner, we played Oh Hell, and I won on the last hand, beating Mom by two points.

About the time that we finished playing cards, Dad started coughing again. I was a little surprised, because he had coughed only a few times since getting up this morning. It seemed that his secretions thickened and the coughing started with the approach of bedtime. When we got to the bedroom, I checked his oxygen saturation, and it was down to 90% and then dropped into the 80s. Had I not changed out his trach earlier today, I would have thought that his trach might be partially blocked. He hadn’t had his oxygen saturation level drop below 90% in many months. I told him that I’d need to remove the speaking valve again so that we didn’t restrict his oxygen intake.

I set my iPhone timer to wake me every hour so that I could check on him, but I might have been up more often than that. He seemed to be struggling with the secretions and I suctioned a lot of thick secretions from his trach. My goal was to keep his oxygen saturation level at a minimum of 92%, and I would not replace the speaking valve until he reached 93%. At midnight, his oxygen level was up to 92%.

December 27. At 2:00 A.M., I heard the sounds of coughing through the baby monitor. When I approached Dad’s bed, I saw that he had moved the oxygen trach mask away from his trach. In my bleary-eyed state two hours earlier, I had not returned the oximeter to its normal spot, and now I couldn’t find it to check his oxygen saturation. After I finished suctioning him, Dianne found the oximeter, and we saw that his oxygen level was at 93%. When I returned to his room two hours later, it was time for him to get up and get ready for dialysis. Thankfully, his oxygen level had now reached 95%. Dad didn’t usually have dialysis on Sunday, but the schedule had been modified to accommodate the Christmas holiday, which had fallen on Friday this year.

Dad was ready to go at 5:45 A.M. The weather was bad, and when the HOP had not arrived by 6:15 A.M., we were concerned that the bus was not coming; thankfully, they were just running late. After Dad and Dianne left, I went back to bed. Stan woke me about an hour later because he saw a text message arrive on my phone from Dianne about Dad’s low blood pressure. Although I appreciated that she wanted to keep me informed, I was pretty sick and wanted to sleep. Low blood pressure was always a possibility during dialysis and the nurses could adjust the dialysis machines to alleviate most problems.

In all the time that I had been living with my parents since my father’s discharge from the hospital or during weekend visits, I had not missed church on Sunday, but I was pretty certain that the entire congregation would be grateful if I stayed home today. Stan drove Mom to church and I tried to go back to sleep. No sooner had I closed my eyes than I heard the chime of my phone announcing the arrival of another text message. Dianne now informed me that Dad’s oxygen saturation levels were low. It was 10:15 A.M. and I was wearing my scrubs, so I decided that I should get up and go to the dialysis center and suction Dad–something that the nurses would not do. I had not told Dianne that I was coming, so she and Dad were surprised to see me. Between the suction machine and the Yaunaker provided by the dialysis center and our supplies in Dad’s dialysis bag, I had everything that I needed and was able to suction him in a matter of minutes. His oxygen levels were low and he was coughing, but I didn’t find any secretions in his trach. I couldn’t provide any more assistance, so I returned home.

By noon, Dad and Dianne were back home, and Dad was ready to lie down for a nap. After we transitioned him to the bed, I administered his meds and suctioned him again, and this time I pulled quite a bit of thick secretions from his trach. When he woke from his nap at 2:00 P.M., his oxygen saturation level was down to 88%, a reading that would have set off the alarm on the hospital monitors. I decided to administer the contents of a saline bullet before I suctioned him. I had been provided with a box of saline bullets when Dad came home, and each bullet contained 30 ml of saline, which would break down the secretions. I later learned that the use of saline bullets is a disputed practice, with some nurses professing that it can do more harm than good, but was what I was taught by the respiratory therapists at the CCH. When I tested his oxygen saturation a few minutes after I had suctioned him, his oxygen level had improved to 91%.

Dad was ready to get up from his nap. When Stan was here, Dad liked to play cribbage, and he needed to get his cribbage fix before Stan left. When they were finished, Dad was ready for another nap, but gave us strict orders to wake him before happy hour.

When I went to Dad’s room to wake him for happy hour, the oxygen trach mask was nowhere near his trach and his oxygen level was down to 79%. This wasn’t turning out to be one of my better home-care days. I placed his trach mask over the trach and increased the oxygen levels on the concentrator and his oxygen level soon returned to the 90% range.

Because I had been removing Dad’s speaking valve during the night, Stan wanted to find a way that Dad could notify Dianne and me if he needed assistance. Stan returned from a shopping trip with a doorbell and a duck call, neither of which was met with any enthusiasm. We decided to stick with our current process where I would check in on him every hour or so during the nights that he didn’t have the speaking valve.

After playing a spirited game of Oh Hell, where Mom won, we had Dad ready for bed shortly after 8:15 P.M. After Mom went to bed, Stan and I puttered around the house and talked for a while before we went to bed. Although we spoke every night on the phone, we had been living a sort of strange existence for the past few months, and it was nice to just sit and talk. We knew of couples who lived in different cities and “visited” occasionally, but I couldn’t live like that.

When we finally went to bed at 10:00 P.M., I set the timer on my iPhone to wake me every two hours, but I was so sensitive to the sounds emanating from the baby monitor, I was pretty sure that I’d be up more often than that to check Dad’s oxygen saturation levels and to suction him, and I was.