swallow therapy – Page 3 – Tale of Two Parents

In my mind, everything was riding on the MBSS

Published on October 10, 2017 by mellowdee55Leave a comment

December 18, 2015. When I started work at 4:00 A.M., everyone else was still sleeping, and the house was very quiet. A couple of hours later, I heard sounds of people stirring in Dad’s room. When I checked on him, he seemed to be moving slowly. He sounded congested, and he used the suction wand a lot. By 8:00 A.M., his coughing had subsided somewhat, and Michell had him ready for the day. An hour later, she donned her drill-sergeant demeanor and started coaching him through his exercises. She had him walk with the walker throughout the tiled areas of the house and work on his core and leg exercises. During short breaks, she brought him a couple of cups of crushed ice so that he could practice swallowing. I appreciated the way that she kept after him to exercise between therapy sessions. By 10:45 A.M., Dad was exhausted and was ready for a nap.

I had a date in Houston that night with my husband, and I wanted to leave Temple before noon. I logged off from work at 10:30 A.M. and started packing up to leave. After a quick lunch, I was out the door by 11:45 A.M. The traffic was light until I got near Houston, and the trip was relatively hassle-free. I arrived home shortly before 3:00 P.M. and treated myself to a short nap on the couch with my two cats, which meant that I merely catnapped.

In Temple, Stephanie, the home-care nurse, arrived at 12:45 P.M. and said that one of Dad’s lungs “didn’t sound all that clear.” She told Michell and my parents that every couple of hours she wanted Dad to take ten deep breaths and hold the last breath. The nurse said that this exercise would make him cough, and I surmised that it was supposed to help clear his lungs, but I doubted that he did it even once.

Kristen arrived at 2:00 P.M. for Dad’s swallow therapy, and she was pleased with his progress. At the end of the session, Kristen seemed excited about Dad’s upcoming MBSS on Monday and said that she thought he’d do well. I sure hoped so.

Kristen was barely out of the house before Michell had Dad walking the halls with his walker, and she then coached him through a few bed exercises. While he was on the bed, he decided that he might as well take another nap.

While Stan and I enjoyed “A Christmas Story” in Houston at TUTS, Michell and my parents played three-handed Oh Hell, and Michell won.

December 19. Dad and Michell woke up at 4:00 A.M. and started getting ready for dialysis. Dad had slept fairly well, but at 2:30 A.M., Michell had awakened to see Dad getting himself back under the covers after sitting on the side of the bed to use the urinal. He made her crazy whenever he moved around the bed without asking her for assistance.

In Houston, Stan and I slept in until the decadent hour of 6:00 A.M. I allowed myself to laze around the house for another hour or so before going to the grocery store for gas and some items to take back to Temple. Over the past several months, I was lucky to have had friends who were quite willing to help me meet deadlines while I was living out of town and careening into Houston on my tight schedules. On my way out of town today, I met one such friend from my photography class for a little bit of a catch-up, and then I delivered some holiday biscotti to some other friends. This would be my last visit to Houston until after the new year.

I had finished all of my errands and was en route to Temple by 11:00 A.M. During my drive to Temple I stopped twice—once to stop at Buc-ee’s and once when the DPS stopped me for speeding. After receiving the warning for driving 75 MPH in a 70 MPH zone, I maintained my speed at two miles over the speed limit and was then tailgated for the remaining 80 miles of my trip.

Meanwhile, Dad and Michell returned home from dialysis at 11:45 A.M. After Michell administered his midday meds and trach care, he was ready for a nap. I arrived at my parents’ home at 1:55 P.M., just as Dad was just waking up.

I was starting to worry about Dad again. We had not received his lab results, but I was fairly certain that he was suffering from CDiff. His probiotic meds arrived today, and I hoped that they would help him. This danged infection weakened him, and I didn’t want him to be too weak to perform well during the modified barium swallow study (MBSS) on Monday.

Later in the afternoon, LoSharris and Tom, my parents’ neighbors, stopped by with some candy and cookies, and the five of us had a nice visit. It seemed almost like old times.

After dinner, we played cards. Dad won, but I gave him a run for his money. By 7:30 P.M., Dad was getting ready for bed and drifted off to sleep in less than 20 minutes after being helped to bed.

December 20. Dad woke up a couple of times during the night to use the commode. Because of the baby monitor in his room, I woke up whenever he woke up or stirred in his squeaky hospital bed. Although he was able to get back to sleep shortly after 2:00 A.M., I didn’t have his gift of falling asleep at the drop of a hat. After a fitful rest, I eventually got up at 7:15 A.M., which was also when Dad woke up.

Our biggest challenge with Dad was that he now tried on a regular basis to sit up on the side of the bed while still plugged into all of his devices, which tended to put a strain on the lines that tethered him to the bed. After coming close to hurting himself last week, I would have thought that he’d ask for assistance. Regardless of how often I reminded him that we had hired aides whose job it was to assist him, he didn’t want to bother them. Our family had never needed outside help and I suspect that he was uncomfortable in asking for it now.

For as many years as I could remember, Mom had baked her traditional Christmas morning bread for close friends. Even the dramatic change in our lives could not deter her from this tradition, and she had been baking steadily during the past week. Today, she brought three loaves of bread with us to church—one for each of our favorite church ladies: Kris, Sue, and Sue’s mother, Joan. I was finally able to connect with Pastor Don and his wife, and I gave them some of my homemade biscotti.

While Mom and I were at church, Michell had had Dad walk 212 feet, which was not as far as Friday but was still a great effort. He also did some other exercises, but he had read about some football games that would be televised today and wanted to watch them. Being interested in anything on the television was significant. He had not shown any interest in watching anything on the television since before his surgery some 7-1/2 months ago. The fact that the Houston Texans were playing the Denver Broncos helped to entice him. At halftime, he thought that the Broncos had won because they had a 20-point lead, so he quit watching. Stan told me later that the Broncos had blown their lead and had lost the game.

Dad expressed some concern about feeling the trach when he swallowed. He had never spoken about the trach, so the comment seemed like it was coming from out of left field. I had a nagging feeling that he feared that he might not do well tomorrow with the MBSS test and was bracing me for a poor outcome.

After happy hour, I followed him to his room and asked him if he was apprehensive about the swallow test the next day. I didn’t get much in the way of a response from him, but knowing him as I do, I suspected that he was nervous. Hoping to allay his concerns, I told him that Kristen was confident that he would do well. Truth be told, I was as nervous as a cat about this test.

By 7:30 P.M., Mom had beaten us at Oh Hell, and Dad was on his way to bed. Less than an hour later, Dad was sleeping, and everyone else in the house was moving in that direction.

December 21. My iPhone alarm woke me at my usual time and I grabbed some coffee and logged on to work at 3:45 A.M. I could hear a little commotion in Dad’s room at 5:00 A.M., when Michell helped him to the bathroom. A few minutes later, she helped him transfer back into the bed and reconnected his tube feed and oxygen lines. The room was quiet until 8:00 A.M., when Michell woke him. By 9:15 A.M., Dad was dressed and ready for his busy day.

Brenda arrived at 10:15 A.M. for Dad’s physical therapy session. She had him walk with the walker and perform a series of sink exercises. He didn’t seem to exhibit any weakness during his session, which eased my fears about him being too weak for his swallow study this afternoon.

While we were waiting for the HOP to arrive, the dispatch office called to tell us that the driver was lost and could not find our house. I stood at the end of the driveway with the phone and provided turn-by-turn instructions for the driver. Fortunately, the schedulers pad the required transportation time, so he wasn’t more than a few minutes late to our house, and we arrived early to the hospital for Dad’s appointment.

While we were in the x-ray waiting room, Holly, Dad’s speech therapist during his hospital stays, stopped by to see us. I was very fond of her, and it was thoughtful of her to stop by to say hello. After introducing Michell and reintroducing Dad to her, there were hugs all around. She was very reassuring, and before she left, she told us that Dr. Sherrard knew every trick in the book to get good results from Dad so that he could pass the test. When the tech escorted Dad to the exam room, she said that there was room for the three of us to observe the procedure without being exposed to the x-ray.

The only thing that I would ever see that’s cooler that this is a total solar eclipse, and that wouldn’t happen for another 20 months. Barium was mixed with a thin liquid, like water, a thickened liquid, like nectar, and a soft solid. Dad sat in front of an x-ray, and the barium additive enabled us to observe how he swallowed the liquid and food items. When Dr. Sherrard saw how something seemed to get caught when he swallowed, she had him repeat the test, but with his chin tucked. The chin tuck made a huge difference that even the three of us could see. The doctor confirmed that he was able to swallow thickened liquids and soft foods, which was such good news! At the end of the test, I hugged Dr. Sherrard and started tearing up. I didn’t know how Dad felt about this day, but I had been worrying and praying about this test from the time that it was scheduled. He had failed this test twice during his hospitalization, and the doctors had written him off as a chronic aspirator—someone who would never be able to swallow food again. As far as I was concerned, everything had been riding on a successful outcome of this test.

Michell and Dad took the HOP back home, and Mom and I left the hospital in my car. On our way home, Mom and I stopped by the pharmacy to pick up another prescription for Dad’s CDiff. We were hopeful that Dad would have better luck with this medication. While we were waiting in the pharmacy, I texted Stan, Sue and Kris, and the pastors to share the good news about Dad’s test results, and they sent back a flurry of amens and hurrahs.

Kristen arrived at the house at 4:00 P.M. She had already received the results of the MBSS from Dr. Sherrard via Adan. She was very excited about the test results—almost as much as I was—and was ready to progress to the next level. She wanted Dad to eat something and suggested applesauce. We didn’t have any, but we had homemade apple butter, which Dad had eaten on waffles every weekend before his hospitalization. He had not eaten since dinner on May 5, so his taste buds weren’t used to anything stronger than crushed ice. From his reaction, you would have thought that we were feeing him pureed jalapenos. He went on and on about the spicy food that we gave him. As Kristen coaxed him to swallow more bites, I tucked my chin as he swallowed, willing the apple butter down his esophagus.

During our very happy happy hour, our neighbor Jane called. I had left a message for her to call me so that I could arrange to return a casserole dish that had held a yummy dinner. During my visit with her and her husband, Mickey, I shared our wonderful news about Dad and caught them up on some of our trials since his return home. They served me wine, which caused me to linger longer than I should have. By the time that I returned home, our dinner was a little overdone. I was too happy to be very contrite over a slightly-burnt dinner.

Dad sat with us during dinner, and we served him a very tiny portion of chocolate pudding. Following our dinner of pudding and burnt casserole, we played a game of Oh Hell, and I won. After his busy and eventful day, Dad was in bed and nodding off to sleep by 8:30 P.M.

http://www.uwhealth.org/voice-swallow/modified-barium-swallow-study-mbss/11461

Why did it have to be a snake?

Published on October 3, 2017 by mellowdee55Leave a comment

December 14, 2015. We had a 9:00 A.M. appointment today with Dr. Pfanner, the gastroenterologist. Before Michell had left on Wednesday, she had mentioned to me that Dad had seemed a bit weaker. His strength had seemed to wax and wane depending on the quality of his sleep. However, yesterday Katherine also mentioned Dad’s weakness and suggested that we ask the doctor to order another CDiff test. Some of Dad’s symptoms were returning, and we suspected that his last course of antibiotics had not completely eradicated the infection.

When we arrived at the doctor’s office, the nurses and doctor were agog about Dad, repeating how much better he looked than he had just a few weeks earlier. The nurse said that seeing him “just made her day.” They were also pleased that he had gained a couple of pounds. His weight was up to 139 pounds. The dietitian said that if he passed his swallow test, she would recommend that we start him on bolus feeds, which would mimic three to four meals per day. I also asked her about putting him on a probiotic diet to reduce the likelihood of contracting CDiff. She thought that that was a good idea and that she would discuss options with Dr. Pfanner. I also asked her if we could have Dad retested for CDiff because for the past couple of days he seemed to be exhibiting some of its symptoms again. Dr. Pfanner told me to order VSL#3 Probiotics for Dad and administer one sachet a day in his feeding tube. He said that he would rather wait a couple of more days to see if Dad’s symptoms persisted before retesting him for CDiff.

The gastroenterologist’s office was located in the clinic at the hospital. While Dad and Katherine waited for the HOP to take them home, I decided to stop by my parents’ cardiologist, whose office was in the hospital. Dr. Elizabeth Ebert was not available, but I was able to speak with Jennifer, her nurse, about removing Metoprolol, a Lopressor, from Dad’s list of meds. To this layperson, this drug seemed at cross-purposes with another one of his medications. Jennifer said that Cardiology would defer to Nephrology about all of his blood pressure prescriptions, so I would need to contact Dr. Issac. After Dad and Katherine returned home, Dad took a nap.

Mom had mistakenly scheduled the physical therapist for 1:30 P.M., which conflicted with Dad’s standing appointment with the speech therapist. Although he had been a little weak during his last session, he had a good physical therapy session today with Brenda. When Kristin, the speech therapist, arrived at 2:00 P.M., she said that she could reschedule Dad’s session for the same time this Friday.

At 4:30 P.M., I changed Dad’s trach tube. It didn’t go as smoothly as most of the other changes, but it wasn’t nearly as horrible the last the time when I got the two trach collars tangled up on the collars’ Velcro. I’m always unnerved when Dad seems like he can’t breathe, and he turns all red, which can happen after 10 seconds. Katherine is a wonderful CMA and had been handling the daily trach care and the meds for me, but she said that she didn’t want any part of the trach changing and she was glad that I was around to do it.

During happy hour, Dad seemed to use the Yankauer suction wand more often than usual and coughed up a lot of secretions. It wasn’t unusual for him to cough more than usual after I changed the trach, and I suspected that the lubricant that I used on the trach tube was the culprit. The addition of ice, which probably hardened the lubricant somewhat, might have contributed to the additional irritation and secretions.

December 15. Dad and Katherine were up at 4:15 A.M. Except for waking up for a few minutes at 11:30 P.M., Dad had had a good night’s sleep. Mom had called the dispatch office yesterday to set up Dad’s pickup schedule for the next two weeks. Because we now understood that we had to schedule time by the target arrival time and not the pickup time, today’s bus arrived at the more reasonable hour of 6:00 A.M., approximately 25 minutes later than before. Katherine mentioned that Dad’s CDiff symptoms were worsening and that the diarrhea seemed to have returned with a vengeance. As much as I liked Dr. Pfanner, I was just a little annoyed that he hadn’t ordered the lab work and wouldn’t do so for another 24 hours.

Today, I drove 65 miles to Austin to attend an annual lunch with a group of former coworkers. It was a long way to go for lunch, but we had been meeting for about 15 years, and I always looked forward to seeing these guys. The luncheon also gave me an opportunity to share more of my holiday biscotti and experience one of my normal activities and traditions.

While I was in Austin, Dad seemed much weaker and stumbled and almost fell when he tried to reach for the urinal. Later, he almost toppled over when he got up from the commode. Katherine was learning that she had to keep a watchful eye on him at all times. Dad admitted to her that he was feeling weak and tired, and by 1:00 P.M., he was ready for a nap.

Dad was waking up from his nap when I arrived home at 2:00 P.M. I worked the rest of the afternoon, stopping at 5:00 P.M. when Dad announced that it was time for happy hour.

While we were eating, Dad was sitting in his wheelchair in his bedroom, but became impatient with us and decided to wait for us in bed. Instead of asking for assistance, he decided that he could make the transfer from the wheelchair to the bed by himself. We didn’t realize what he had done until we went to get him to play cards. Because his tube feed and oxygen were attached to the wheelchair, the oxygen and G-tube lines were pulled taught. Once again, I was relieved that he hadn’t decannulated himself by such a stunt. Katherine thought that he was OK, but I noticed a stain on his shirt. When we lifted the shirt, blood appeared to be seeping from his G-tube stoma.

Instead of playing cards, I called the Homecare nurse and texted Sue. Sue called me immediately. We spoke at length, and she tried to assure me that he was probably fine. While I had her on the phone, I decided to tell her about my conversation with Dr. Ebert’s nurse. Sue said that she wanted to keep Dad on the Metoprolol. In response to my call to the Homecare after-hours number, Leo, the night nurse, stopped by, cleaned around the stoma, checked Dad’s vitals, and left at 9:30 P.M. To avoid any similar incidents in the future, we assured Dad that we wanted him to call us at any time and that assisting him would not be a burden.

It was way past bedtime for all of us, and we prepared Dad for bed as soon as Leo left.

December 16. After our late night with Leo, Dad slept in until almost 7:00 A.M. He had now endured the two additional days of CDiff symptoms, so I called Dr. Pfanner’s office as soon as his office opened. I spoke with Talitha, his nurse, to see if she could order a CDiff test for Dad, but she wanted to check with the doctor. After I tired of waiting for a return call, I emailed Dad’s nephrologist to see if he would order the test. By the time Talitha got around to placing the orders, she saw that the order had already been placed by nephrology.

At 10:45 A.M., Michell returned for her week with us. With all of the folderol last week, her week off was only three days. I’m sure that her time off flew by. After Katherine left, I found a note that she had written:

Mr. & Mrs. Locke & Melody,

I just wanted to say thank you so very much for allowing me the opportunity to meet y’all and care for Mr. Locke.

This week has been a true blessing not only for the work (money) but for getting to be a part of y’all’s lives. It’s been a true pleasure.

Have a wonderful week.
Katherine E. S.

Dad had a full schedule of therapists today. Less than an hour after Michell arrived, Janet arrived for Dad’s occupational therapy session. As soon as she left, Dad wanted to lie down for a nap.

Dad woke from his nap about 30 minutes before the always-prompt Kristen arrived for Dad’s swallow therapy session. She was very encouraging and said that Dad was progressing extremely well.

About 40 minutes after Kristen left, Brenda arrived for Dad’s physical therapy session. She also said that Dad was progressing well and said that she would speak with Kathleen, her manager, about increasing Dad’s goals.

Shortly after happy hour, Timothy from American HomePatient stopped by with 12 more tanks of oxygen and a new tube feed pump. Before he left, he showed me how to use it. This pump wasn’t very different, but it used different-sized bags. We had a huge supply of the bags that fit the other pump, but he could not take them. We had so many boxes of supplies that I decided to stash the extra bags in case we needed them again. After Timothy left with the bleeping Kangaroo pump, we played cards, and Michell won.

When I went upstairs to bed, I called Stan to tell him about the day and say goodnight. He was at the office and would be working all night. He also told me that he was now on call for the next week, which meant that he could not drive up to Temple this weekend. Damn.

December 17. I had been working for about 30 minutes when Dad and Michell got up around 4:00 A.M. Each morning when Mom got up, she stepped out the front door to get the newspaper. My parents had the most wonderful paper carrier on earth. Each morning he would pull into their circle driveway, get out of his car, and place the newspaper on the front porch. On most mornings, my parents could simply lean down and pick up the paper without stepping out of the door onto the front porch.

Today, however, was different. Although the paper was in the right place, Mom saw something on the front porch that kept her from opening the door. When Mom looked out of the front windows, she saw a large snake on the front porch, which wasn’t all that unusual. It scared her enough, though, that she wouldn’t open the door to get the paper, and she came to the office to get me—the biggest wuss in the world when it comes to snakes. When I looked out the front window, I had to laugh. The snake turned out to be a bungee cord that fell off of Timothy’s hand truck during his delivery last night. With the bravado of Crocodile Dundee’s better half, I boldly walked outside, captured the bungee snake, and picked up the newspaper.

Before they left for dialysis, I shared the story of the bungee snake with Dad and Michell, and we all got a good laugh out of the tale, including Mom.

The bus arrived back home with Dad and Michell at 11:25 A.M. After administering Dad’s meds and getting him settled for a nap, Michell and I collected another stool specimen that I dropped off at the Scott & White lab.

With all of the interruptions of the day, I didn’t get back to work until 4:00 P.M. I was exhausted and ate some M&Ms in an attempt to stay alert for the short time that I worked. We lived on a schedule here, so I stopped working at 5:00 P.M. We had happy hour before dinner at 6:00 P.M.

Because we had had a big lunch of meatloaf sandwiches, we weren’t terribly hungry at dinnertime, so we had minestrone. After dinner, the four of us played cards, and Mom won.

It felt so easy and comfortable now that Michell was back with us. I made a point of telling her how glad I was that she was back. I should do that more often. It had been a busy day of snake wrangling, test samples, errands, and even some work. I was in bed by 8:15 P.M and glad to be there.

Not all aides are created equal

Published on September 26, 2017 by mellowdee55Leave a comment

December 8, 2015. Dad woke up at 2:30 A.M. and wanted to get ready for dialysis. Fortunately for Michell, she was able to convince him to stay in bed until 4:00 A.M. Unfortunately, the commotion in Dad’s room woke me and I couldn’t go back to sleep. After tossing and turning, I finally got up at 3:15 A.M.

As I was walking to my office with my first cup of coffee, I heard the annoying alarm of the new Kangaroo pump coming from Dad’s room. Unbelievable.

Dad was dressed and ready to go to by 5:25 A.M., and it was a good thing. The HOP arrived at 5:35 A.M. to take him to dialysis. Dad was fortunate that he had a dialysis catheter and not the typical fistula for dialysis. The catheter patients required an RN to get them set up and could enter the clinic as soon as they arrived. Other patients had to remain in the waiting room until their appointed time. When you get picked up at 5:35 A.M. for a 7:00 A.M. chair time, you could have quite a wait before being called.

At the stroke of 8:00 A.M., I called American HomePatient and asked to speak with Holly, the general manager. I explained to her that the Kangaroo pump that Timothy brought us yesterday had started alarming only 12 hours after we started using it. She suspected that the power cord might be the culprit and told me that she would stop by later in the day with a new one.

Dad and Michell returned home from dialysis shortly after 11:30 A.M. After we administered his midday meds and trach care, he was ready for a nap.

Becky called and told us that she had a temporary replacement for Gale. Her name was Joy, and she would start tomorrow. She didn’t say so, but I knew that Michell was relieved that she would not have to stay an additional week. Dad was a challenging patient, and the aides were somewhat sleep deprived at the end of a week with us. Michell and Gale both admitted that they slept a lot for a day or two after they returned home. We were fortunate that they seemed to like all of us.

After lunch, I went to the pharmacy to pick up more Renvela for Dad. By now, the pharmacy clerks at the Scott & White Pharmacy knew me. When the clerk told me what I owed, I felt something like a wave of nausea. Instead of being charged $187, which was what I had paid in September, the bill was $683.20, which was half of the normal retail cost. Seeing my distress, the clerk asked me if Dad was in the donut hole (the gap in Medicare coverage for prescription drugs). When I told her that I didn’t know, she checked his account, and it seemed that he was. I told her that I didn’t want the drug now and would contact his doctor. I sat in the car and texted Sue, the dialysis nurse practitioner, and asked her how badly Dad needed this drug. She said that his phosphorus levels were good and that we could hold off until January, when his new year’s Medicare coverage would start. I went back inside and told the clerk that I would wait until January to pick up his refill.

At 3:30 P.M., Holly from American HomePatient stopped by with another power cord. She looked at our Kangaroo pump and said that it was not a portable model and that if Dad was going to spend most of his time in a wheelchair, he would need a different pump. Obtaining a new pump would require communication with Medicare before she could order a replacement. She told us that we should have the new pump in 5—7 days. With any luck, the confounded beeping would not drive us mad before the replacement pump arrived. I found this situation perplexing. This was the second time that we seemed to have equipment that required Dad to remain in bed. I had had a heated discussion with an order clerk from American HomePatient who told me that Dad was using too much oxygen and that he should remain in bed and use the oxygen concentrator and nebulizer. Now we seemed to have a pump that was supposed to remain on the IV pole by the bed. It was like home care catered to patients who were destined to get worse. The issue with the Kangaroo pump left me baffled because the pump had an internal rechargeable battery. During the day, we moved it from the stationary IV pole and attached it to an IV pole on a wheelchair—an IV pole that was supplied by American HomePatient. Suddenly, after a couple of weeks, suddenly we weren’t using the pump in the manner it was designed. To top it off, it only alarmed when it was plugged in. What’s the point of a rechargeable battery if you can’t unplug it? On the other hand, Holly was very nice, and we now had her direct phone number, and she encouraged us to call her if we had any problems.

At 5:00 P.M., we were all ready for happy hour. After dinner, we played cards, and Dad won again.

December 9. Dad had a great night’s sleep and didn’t wake up until 5:30 A.M. It was changeout day for the aides, and the transition would take longer today because Michell had to orient a new aide. In preparation for her week off, she changed the linens on her bed and gathered her belongings.

My morning of meetings started at 8:00 A.M. During one of my meetings, I heard the doorbell ring and assumed that the new aide, Joy, had arrived. When my meetings ended at 11:00 A.M., I ventured out of the office to meet Joy. When I entered the kitchen, I was surprised to find only my parents and Michell. I was correct in my assumption that Joy had arrived, but evidently, the orientation had not gone well. As Michell was telling her about dialysis, Joy objected to having to stay with Dad. Before Michell got much further in her explanation, Joy asked when she could take breaks. However, the final straw for Michell was when Joy asked if it was OK for her to smoke outdoors. Michell told her that because of the trach and the oxygen, she didn’t think that smoking was allowed at all. A couple of minutes later, Joy walked out the door to her car—presumably to get her belongings. When she didn’t return after a few minutes, Michell noticed that Joy’s car was gone.

When Mom called Becky to tell her about Joy’s short stay, Becky was horrified—for a couple of reasons. Besides the most obvious reason, Joy had told her that she had quit smoking. Becky asked Michell if she could stay an additional day while she tried to find someone else to fill the position. Michell, who was now very protective of Dad, said that she would stay until Becky could find a suitable replacement.

Shortly after Joy departed, Brenda arrived for Dad’s physical therapy session and Kathleen, her supervisor, arrived to observe Dad transfer in and out of the shower. As Kathleen was leaving, she said that she was satisfied with Dad’s progress. However, the first time that Dad showered, she wanted an aide from physical therapy to assist him and show us how to protect the dialysis catheter. Because we had to protect it from any dampness, I was told to purchase some catheter guards to protect the ports. I had emailed some links about different catheter guards to Sue, and she had approved of a couple that I had ordered online. After Kathleen left, Brenda continued with Dad’s physical therapy session. Brenda had him walk 96 feet. She tried to have him complete multiple sets of exercises, but Dad seemed to be experiencing some weakness and could complete only one set.

After Brenda left, Dad took a nap, and I ate lunch with Mom and Michell.

Kristen arrived promptly at 2:00 P.M. for Dad’s swallow therapy session. I was not able to attend this session, but according to Michell, Kristin was very pleased with his progress. She had Michell get Dad some ice to eat during their session. She encouraged us to keep giving him ice and said that nothing would improve swallowing more than swallowing.

After Kristen left, Michell coached Dad through his occupational therapy weight exercises and some of the bed exercises prescribed by the physical therapist. Michell thought that Dad was a little weak this afternoon and didn’t pressure him to do many exercises.

From what I could observe, we had had a good day. I was so pleased with Michell. She had really stepped up and proved herself to be a valuable member of our little team. I was thankful that we found out about Joy while Michell was still here; otherwise, we could have been without an aide.

After dinner, we played cards, and Mom was tonight’s winner. By 8:00 P.M., Dad was in bed and drifting off to sleep.

December 10. At 2:30 A.M., Dad woke up for a few minutes, but then drifted back to sleep. At 4:00 A.M., Michell woke him so that he could get ready for dialysis.

I had a couple of early morning meetings and didn’t see Dad and Michell leave when the HOP arrived. Becky called and said that she had found a replacement aide for Michell, and her name was Katherine. After yesterday’s experience, Mom and I were practically holding our breath while we waited for her to arrive.

Katherine arrived shortly after 9:00 A.M. and Mom and I seemed to click with her immediately. We were also relieved when we learned about her many years of experience. Except for Gale, the aides were certified nurse aides (CNAs). It seemed that Katherine was a certified medical aide (CMA) and had a bit more experience. She had not changed a trach, but she had experience administering trach care and meds. I would still be responsible for organizing the meds, but it was nice to know that she could administer them when I wasn’t available. Gale and Michell had been willing to step up to help me when I had to leave town, but the responsibility caused them some stress.

I drove Katherine to the dialysis center so that Michell could show her around and orient her to the facility, and Michell had a nice surprise for me. She opened Dad’s gym bag and showed me several sample packets of Renvela. Even with the reduced doses that I gave Dad, it wasn’t enough to last until the end of the year, but it would help stabilize his phosphorous levels. I was relieved beyond words. After we got home, Michell showed Katherine around a little more before she left for the week.

My parents had a large angel trumpet plant in their courtyard, and it was in full bloom. Mom had told their neighbors, Jim and Sharon, about the plant and they stopped by to see it during happy hour. Having friends visit made our day feel almost normal.

I showed Katherine how to change the trach dressing and administer the meds. She had suctioned trach patients in the past, and she had no problem changing the trach dressing. I would be leaving tomorrow for a couple of days, and I felt very comfortable having Katherine in the house.

After dinner, we put Katherine to the real test and taught her how to play Oh Hell. She was a quick learner, but Mom won.

December 11. Today was Katherine’s first full day with Dad. At 4:45 A.M., she experienced the alarm of the Kangaroo pump when it ran out of tube feed. She woke up, added a couple of cans of Nepro, and then slept until 6:00 A.M. when Dad woke up.

Dad was still in bed when I entered the bedroom, and I was horrified to see him lying flat on the bed. I couldn’t believe that Michell and I had forgotten to tell Katherine that he had to maintain an angle of at least 30 degrees. Other than the problems of my omissions, she had been great with Dad and had no trouble handling the daily trach care activities.

Janet arrived at 11:00 A.M. for Dad’s occupational therapy session. Janet and Dad loved to verbally spar with each other and I couldn’t help but laugh as I overhead them from my office. As she was leaving, Janet told me that she was happy with his progress. Before Janet got out the door, Stephanie, the nurse, arrived.

When I had changed Dad’s trach, I noticed blood on it, which was unusual. I had taken a picture of it with my iPhone and asked Stephanie to give me her opinion about what might have caused it. She said that she wasn’t sure, but it could have been caused by the trach tube rubbing against the trachea. Because he seemed to be coughing a lot lately, I also asked her to check out his lungs. She seemed to think that he was OK.

By the time that Stephanie left, I had worked about five hours and needed to eat and then drive back to Houston. I was about an hour away from Temple when Katherine called me. It seemed that I had forgotten to show her how the oxygen tanks worked. My transfer of knowledge session with her had been slightly less than perfect.

I was so sleepy on the drive home that I think I fell asleep for a second. I often became drowsy during the last 20 miles of this drive and Stan had suggested that I eat M&Ms to stay awake. I wished that I had some now. When I arrived home, Stan was playing golf with his coworkers. Before he returned home, I left for the Glassell School of Art to work at the student art sale. When I got back home at 8:45 P.M., I finally had some time to visit with Stan and our cats before calling it a day.

Back in Temple, my parents and Katherine maintained their typical schedule. After dinner, they played cards and Dad won, which seemed to happen more often than not.

During my stay in Temple, the seasons had progressed from the early fall and Halloween to the late fall and Thanksgiving, and now we were getting ready for Christmas. I stayed in Houston long enough to get a haircut, run some errands, and pick up some clothes from home that were more suitable for the coming holidays. Stan left Houston for Temple at noon and by 2:00 P.M., approximately 26 hours after I had left my parents’ house, I was back on the road to Temple, where I arrived just in time for happy hour. It was the first time that Stan and I had been together with my parents in a couple of weeks.

https://www.mfah.org/visit/glassell-school/

Just when everything seemed to be going so well

Published on September 19, 2017 by mellowdee55Leave a comment

December 4, 2015. I left my home in Houston at 5:30 A.M. en route to my parents’ home. In Temple, at just about the same time, Dad was waking up, and Michell was administering his morning meds and trach care. Dad was in a good mood and was in the kitchen eating ice chips when I arrived at my parents’ house at 8:15 A.M.

Shortly after I arrived, I set up my laptop in my parents’ office. As I was logging on to work, Michell was assisting Dad as he walked 68 steps with his walker. I then heard her coach him through all of his physical, occupational, and speech therapy exercises.

After his workout, he wanted to rest for a few minutes, but within a few moments of his lying down, the nurse arrived at 10:45 A.M. Because this was the first time that this nurse had seen Dad, she gave him a thorough assessment and did not leave until 12:45 P.M.

After the nurse left, Dad had Michell prepare a cup of ice chips for him, and then he told me that we needed to talk. It seemed that during the 22 hours that I was away, he and Mom had made some decisions that affected me. In a nutshell, they wanted me to work from my bedroom upstairs so that Dad could use his computer. I balked at this idea, saying that I wasn’t going to spend my sleeping and waking hours in that room. My father had just purchased his Windows 8 HP computer before his surgery and had not bonded with it. I didn’t believe that after a six-month absence he would be ready to use it without some assistance from me. Also, because so many of my work meetings were online, I would prefer to hardwire my laptop to the modem, which was in the office, instead of working over Wi-Fi. We agreed to wait a little longer before I moved out of their office. I told him that I wouldn’t have any problem with them using Mom’s computer while I was working. Back in Houston, I worked in a cube environment. A little noise would not distract me.

I couldn’t believe how well Dad seemed to have rebounded following his debilitating bout of CDiff. He seemed to be feeling great and had Michell coach him through the second round of all of his exercises.

By 4:00 P.M., Dad was ready for a nap. Michell woke him almost an hour later, just before 5:00 P.M., when I logged off from work.

On most weekends, Stan drove to Temple to spend one or two days with us. Today, he flew to Detroit to spend a few days with his sister and her family. While the four of us in Temple were playing cards, I received a text from Stan stating that he had arrived safely in Detroit.

By 7:30 P.M., Dad had finished beating us at Oh Hell, and Michell and I started getting him ready for bed. Before his hospitalization, I had not realized how fast Dad could fall asleep. Tonight, like most nights, he was asleep before we left the room.

His sleep was short-lived, though, and he woke up at midnight, certain that it was time to get up. After Michell assured him that it was barely Saturday, he asked her to wake him at 3:30 A.M. for dialysis.

December 5. As instructed, Michell woke Dad at 3:30 A.M., and he was raring to get the day started. At 5:45 A.M., he was ready and waiting for the HOP. When the bus hadn’t arrived by 6:15 A.M., I called their dispatch office to check on the status of the bus. The dispatcher said that they were running late. Fifteen minutes later, I called them again and was told that the bus was en route and would arrive soon.

HOP paratransit patrons had an assigned bus to and from their destinations, but the aides were getting a bit more assertive, especially Michell. The trip home after dialysis was more successful than the morning ride because Michell was able to snag a ride on another bus. When they arrived at the house, I was a little assertive myself and insisted that Dad spend some time in his room hooked up to the oxygen concentrator and nebulizer. The nebulizer provided the moisture to his throat and lungs, which he needed after almost breathing dry air for almost seven hours. Also, we were running low on oxygen tanks, so I needed him to spend some time breathing the oxygen created from the concentrator.

During my lunch break, Mom and I went to HEB, the local grocery store, to purchase a little sacrificial poinsettia for my art. Before the week was up, I would cut it apart and use it to create a lumen print.

After logging off from work, I finally got around to changing Dad’s trach. What a fiasco. First, I put the trach collar on upside down. Fortunately, I hadn’t removed the old trach from his stoma. Michell helped me to correctly reattach the trach collar, but after pulling out the old trach, the Velcro from that trach collar got caught on the new trach collar. In most cases, I have the aides stand by for moral support. Today, I was grateful that Michell was there to provide actual assistance. If I had had this much trouble during my training, the respiratory therapist would not have cleared me to take care of Dad. Usually, I could switch out the trachs in less than 10 seconds. Today, I required twice that time. The old trach was a bit of a challenge to clean because it contained some hardened secretions, most likely caused by so much time spent breathing from the oxygen tanks. Although we kept the trach bibs wet, they did not provide nearly as much moisture as the nebulizer.

Dad didn’t do any exercises today because he was a little weak after his dialysis session. However, he spent a lot of time zipping around the house in his wheelchair.

We played cards again after dinner, and Dad trounced us. As we were administering his meds and trach care, Michell and I pleaded with him to sleep all night and wake up only for biological purposes.

December 6. Thankfully, Dad, and by extension, Michell and I, slept in until 6:30 A.M. Mom also had a good night’s sleep, so everyone was feeling refreshed and perky. By 8:00 A.M., Dad was dressed and ready for the day.

Mom and I left for church at 10:15 A.M. While at church, I gave several bundles of biscotti to many of the people who had prayed for Dad’s recovery and who had been the angels on our shoulders during the past few months. In appreciation of their pastoral care, I also presented the three pastors with lumen prints of fig leaves. During the summer months, their sermons had worked their way through the book of Genesis, so fig leaves seemed appropriate.

Shortly after Mom and I left for church, Michell coached Dad through his swallow, occupational, and physical therapy exercises. Before they were finished, Dad also walked another 68 feet with his walker.

Dad took a long nap during the afternoon and woke up at 3:00 P.M. The rest of the day was pretty quiet without Stan. It was a nice day outside, and the leaves were practically leaping off of the trees. I spent some time outdoors in the nice weather sweeping a few thousand leaves off of the driveway.

When Dad woke up from his nap, he wanted to put up Christmas lights. We had already pulled out boxes of Christmas lights to decorate the house. In other years, Dad would have used the step ladder to put up some of the lights, but step ladders were out of the question for him this year. Fortunately, Michell was a little over 6’ tall with an arm span to match. Under Dad’s direction, she and I started putting up some of the lights. We weren’t able to finish before happy hour and would try to finish tomorrow.

We had an early dinner, and by 7:45 P.M., Michell had beaten us at cards. Within 30 minutes, we had finished administering Dad’s meds and trach care, and he was sleeping. It had been a good day, and I hoped that I could start the work week after a good night’s sleep.

December 7. The day got off to a bad start when, at 2:00 A.M., the Kangaroo pump started alarming. Only a couple of things caused the pump to alarm. Usually, the danged thing woke me in the middle of the night when the bag was empty. It amazed me that it would wake me but not an aide who was sleeping right next to it. The pump would also alarm when the battery was low and needed a power source. After hearing the alarm sound off every 10 minutes for 30 minutes, I got up and went downstairs to find out why the pump was keeping me awake.

Evidently, each time that the pump alarmed, a message indicated that the battery was low, but the pump was plugged into the electrical outlet. Michell kept pressing the Continue button, which paused the alarm for 10 minutes. We couldn’t figure out what caused the problem, and so the madness continued. The high-pitched sound did not affect Dad, and he slept like a baby throughout the entire ordeal. At 3:00 A.M., we turned off the pump and Michell and I went back to bed. I didn’t get much sleep before my iPhone alarm woke me at 3:30 A.M. I was glad that I had prepared the coffee pot before I went to bed. I wasn’t able to do much more than push the start button.

At 8:00 A.M. sharp, I called American HomePatient and told them that I wanted a new pump. Timothy said that he’d deliver a new pump to us later in the morning. Just when I thought that the day couldn’t get any worse, Gale called to tell me that she would not be returning on Wednesday and she wasn’t sure if she’d ever return. Evidently, her sister-in-law, who had been ill, had taken a turn for the worse and would be starting hospice tomorrow. Not surprisingly, Gale’s family wanted her to care for her sister-in-law during this difficult time. I felt terrible on a couple of fronts. Of course, I felt bad for Gale’s family, but this turn of events put us in a bind. I suspected that Becky, the owner of One on One Personal Home Care Services, would have a difficult time replacing Gale this close to the holidays. Gale had also been on the rotation to work during Christmas.

While I tried to work, the tired Michell coached my well-rested father through his swallow and occupational therapy exercises. As bad as this day seemed to be going for Michell and me, Dad seemed to be having a great day, in spite of the fact that he had not received any nutrition since 3:00 A.M. When Brenda arrived at 12:15 P.M. for Dad’s physical therapy session, Dad wowed her with how well he was walking and by the way in which he executed his shower transfer.

Within a few minutes of Brenda’s departure, Tracy, the nurse, arrived. She said that Dad’s vitals were good and that he was in great shape. She was barely out of the house when Dad enlisted Michell to finish hanging the lights. I didn’t like him to ask the aides to do chores, but Michell was thrilled at the prospect of going outside.

While Michell and Dad were outside, the American HomePatient van arrived and Timothy delivered Dad’s new pump. Dad had now been off of the Nepro for the better part of 12 hours.

I texted Sue, the nurse practitioner at the dialysis center, and told her that I needed her to order a Modified Barium Swallow Study (MBSS) for Dad and that we were running very low on Renvela. Renvela was an expensive drug, and I had been administering less than the prescribed dosage. I had been monitoring Dad’s lab results to ensure that I was giving him enough to keep his phosphorous levels at the right level. Sue later called to tell me that she had ordered a refill of Renvela for Dad and that his MBSS was scheduled for Thursday, December 17, 10 days from today. I told her that I didn’t want Dad to have the swallow test on a dialysis day and asked if she could call the radiology department and change the date to December 18.

Since my call from Gale earlier today, it seemed like we had an elephant in the room, or perhaps in the house. During our game of Oh Hell, I asked Michell if she had heard from Becky today. Michell said that Becky had called her and had asked if she could extend her stay for another week while she looked for an aide to replace Gale. Michell said that she had told Becky that she’d stay longer if Becky could not find anybody to replace Gale, but that she hoped that she could.

Up until this time, Dad wasn’t aware of the situation with Gale, which had made him the most cheerful person in the house. Dad had finished beating us at cards by 7:45 P.M. and I had finished administering his meds and trach care by 8:15 P.M.

Progressing to a new mode of transportation

Published on September 12, 2017 by mellowdee55Leave a comment

November 30, 2015. I woke up at 3:30 A.M., and Dad and Gale woke about two hours later. Dad’s strength had returned to his pre-CDiff levels, and he was in great spirits. Today he would be assessed for an additional 60 days of home care under Medicare. He had been scheduled for this assessment last week but it was canceled when we were temporarily discharged from home care.

The parade of provider assessments started with Kathleen, the physical therapist, at 10:30 A.M. She was followed at 11:30 A.M. by Janet, the occupational therapist, and at 1:30 P.M. by Stephanie, the nurse. During Kathleen’s visit, she asked how Dad was being transported to dialysis. We told her that we had wanted to use the HOP, but were still using the Scott & White wheel chair service. On October 26, we had hand-delivered our application in hopes that we could expedite the process. We were told at that time that the approval process might take as long as three weeks. We had now waited more than a month. Being able to use the HOP’s paratransit service would save us $114 per week, and we were anxious to take advantage of the cost savings. We had tried calling, but could not get through to a human. Kathleen was familiar with the HOP organization and immediately used a seemingly secret number to phone the office to check on Dad’s status. During her call, she learned that Dad had been approved on November 10, more than two weeks ago, but somehow his paperwork was misplaced and not mailed to us. We could either wait to have them mail it to us or we could stop by the office later today to pick up the paperwork.

During my lunch break, Mom and I drove to the HOP office to retrieve Dad’s ID card and a booklet of regulations. We were told that we would have to call the dispatch office to schedule Dad’s pickup times. When we returned home, Mom called the HOP dispatch office, and I happily called the Scott & White EMS wheelchair van service and canceled Dad’s pickups. Transitioning to the public transit system seemed like a huge milestone.

Shortly after Mom and I returned home from the HOP office, our dear friend Mike called to tell us that he would be passing through Temple en route to Houston from Wisconsin. I had not seen Mike since May 15, 2015, the night that Mom had her stroke. Mike is married to Rhoda, who had come to Houston to help me the day after Mom had her stroke. My parents and I looked forward to seeing him again.

At 2:00 P.M., Kristen arrived for her regularly-scheduled swallow therapy session with Dad. At the end of Dad’s session, she said that Dad was “amazing” and that she wanted me to schedule an appointment for a “cookie swallow” test, otherwise known as a modified barium swallow study (MBSS). She also said that next week Dad would advance from ice chips to applesauce. I was excited, yet scared to death. For so long we had made no progress, and some doctors said that he’d never swallow again. Now, after just a couple of weeks with a speech pathologist, he was about to make a remarkable advancement. On the other hand, after just a couple of weeks working with a speech pathologist, he was going to swallow something that could potentially set him back six months. To say the least, my emotions were all over the map. It didn’t help matters any that my father seemed to have a cavalier attitude about what was happening. He seemed to worry more about tomorrow’s bus ride than he did about protecting his airway.

Kristen left at 4:00 P.M., and after a day of visitors and therapy, Dad was ready for a nap. An hour later, he was awake and ready for happy hour and ice chips. By 6:30 P.M., happy hour and dinner were over, and we were ready for a cutthroat game of cards. Gale was on a roll and won again, although not as handily as she had the previous night.

Our bedtime routine started at 7:30 P.M., and Dad was in bed and ready for trach care by 8:00 P.M. Today, it felt like we were finally back in the groove and back on the road to recovery.

December 1. Dad did not sleep well. He was worried about today’s bus ride to dialysis. At 3:15 A.M., he was the first one awake and was eager to get up. At 3:30 A.M., he asked Gale for the booklet of rules and regulations. He had read that booklet so many times that I was certain that he had it memorized. I’d bet money that he had read the guidelines and rules more than any other HOP rider, and he’d been in possession of it for less than 24 hours.

When I came downstairs at 3:45 A.M., I was a little surprised to see him up. I was even more surprised when I returned from the kitchen 40 minutes later with a cup of coffee and saw that he was dressed and ready to go to dialysis. Needless to say, the very tired Gale was not ready. At 5:00 A.M., the parade of surprises continued when the phone rang. The dispatcher from the HOP called to let us know that the bus was en route to our house and would arrive in a few minutes. When Mom had scheduled his pickup time, she gave them the time that the bus needed to arrive at our house, which was 6:15 A.M. The scheduler interpreted that time as the time that Dad needed to arrive at the dialysis center. After we resolved that misunderstanding, the dispatcher said that the bus would arrive at 6:00 A.M. At 5:50 A.M., they arrived and pulled into my parents’ circular driveway. Mom and I watched as the wheelchair lift was lowered. The driver then wheeled Dad into the bus and ensured that the wheelchair was restrained. After Gale entered the bus, Dad paid his fare of $2, and they were off.

While Dad and Gale were at dialysis, Mom made a cake for Gale. Today was her birthday, and we wanted to celebrate it with her. Our friend Mike arrived a few minutes after 11:00 A.M. I had hoped that Dad would arrive home shortly after his session ended, but the bus did not arrive home until 12:30 P.M. Although Mike needed to be on his way to Houston, he stayed until 1:00 P.M. so that he could visit with Dad.

Shortly after Mike left, Dad was ready for a nap, and he slept until it was time for him to swallow some ice chips. As he wheeled himself from his room, he stopped by the office to let me know that I should stop for the day because it was time for happy hour.

After dinner, we presented Gale with her cake, sang to her, and gave her some cheesy gifts. Had she won at cards, her day would have been perfect, but it was not to be. Tonight was my night to win.

By 8:00 P.M., Dad was in bed and I had administered his meds and trach care. Now that he had had one successful day of public transportation under his belt, I hoped that he would sleep well.

December 2. We all had a good night’s sleep. I slept through my alarm and didn’t wake up until 4:30 A.M., and Dad slept until 6:00 A.M., although he wasn’t ready to leap out of bed even then. He was still in bed when I took a break at 7:00 A.M. to administer his meds and trach care. Dad pointed to his various tubes said that he’d be glad when he could get rid of “all of these wires.” I told him that he was in control of when the tubes would be removed. After he rolled his eyes at me, I reiterated the importance of his physical, occupational, and swallow therapy exercises, which he hated doing. After whistling in the wind for a few minutes, I returned to work and let Gale help him to get ready for the day.

An hour or so later, I heard Gale helping him with his swallowing exercises. He and Mom then ran through the exercises that Janet, the occupational therapist, had left for him.

Michell arrived at 11:20 A.M. and met with Gale so that she could catch up on the events of the past week and learn about the bus service. I think that Michell was relieved to hear that the week had been boring in comparison to her drama-week with us. After Gale left, I gave Michell a hug and told her how grateful we were that she had decided to return.

Gale had barely pulled out of the driveway when Brenda arrived for Dad’s physical therapy session. Brenda put him through his paces, having him walk 68 feet, march in place, stand on one foot, and stand on his toes. Dad was exhausted when she left and was ready for a nap. However, instead of sleeping until he woke up himself, he instructed Michell to wake him by 2:00 P.M.

A couple of hours after waking from his nap, Dad wanted Michell to help him with some of his exercises. I didn’t know if I had inspired him to exercise or if he was more interested in exercise because he was feeling better. The reason didn’t matter to me, as long as he exercised.

After happy hour and dinner, we played cards. Michell was tonight’s winner. By 8:00 P.M., Dad was in bed and practically asleep.

December 3. Dad was up at his regular time for a dialysis day and was ready when the HOP paratransit bus arrived at 5:40 A.M., which meant that Dad would be at dialysis almost an hour before his scheduled chair time. Ideally, he would be home an hour earlier, too.

I worked for about six hours and then packed up my laptop and drove back to Houston. Tonight was the last night of the semester for my photography class. I had missed most of the semester, and I wanted to attend the final critique. Not only did this class represent some remnant of normalcy for me, I wanted to share some of the holiday biscotti that I had baked.

Dad was finished with dialysis at 10:30 A.M. and was on the bus by 11:00 A.M., but because he was the last stop, he and Michell didn’t arrive home until almost 1:00 P.M. By 1:45 P.M., he was ready for a nap. While I was in Houston, Michell would assume responsibility for the trach care and meds. As has been the case with Gale, I had laid out all of the instructions and refilled the pill dispenser. I would be gone for less than 24 hours, so Michell and I both felt that she would get along fine without me.

During happy hour, Michell prepared more ice chips for Dad. After dinner, the three of them played Oh Hell, and Michell won again. After administering the meds and trach care, Michell had Dad ready for bed by 8:00 P.M. and he was asleep before she was ready for bed.

Unfortunately, Dad didn’t stay asleep very long, and by 11:50 P.M. he was fast awake. When Michell asked him why, he told her that he was thinking about problems. Fortunately for both of them, he drifted back to sleep within 30 minutes.

From flying monkeys to angels

Published on August 29, 2017 by mellowdee553 Comments

November 25, 2015. After not getting to bed until 2:00 A.M., the morning seemed to come very soon. I had worked for about an hour when I heard Dad and Michell waking up at 6:00 A.M. I took a break from work to administer Dad’s meds and trach care. My plan had been to work half days this week and then bake for the remainder of the day.

I was worried about the events from the previous night, so at 8:00 A.M., I called the Bell county sheriff’s office to see who had requested our visit from Deputy Blankemeier. After a couple of minutes, a very pleasant woman at the sheriff’s office told me that Adult Protective Services (APS) had placed the call. As I hung up the phone, I called for my mother to tell her what I had learned and that I was fairly certain that we were up the proverbial creek.

Only a few minutes later the phone rang, and it was Tracy, our nurse. Instead of calling to see what time she could stop by, she was calling to tell me that because we signed the AMA last night, Dad had been discharged from Home Care and that all of the appointments for the day were canceled. I felt physically ill, and it seemed as if my peripheral vision was closing in. Being discharged from home care meant that Medicare would no longer be paying for all of the equipment in our house and that all of Dad’s therapies would cease. The financial and health implications were enormous, and I felt guilty for putting us in this position. I should not have taken Dad to the hospital, regardless of what Dr. Pfanner’s nurse had said. I asked Tracy how we could get Dad reinstated. She told me that the only way that we could get readmitted was to have a doctor refer us again. I asked her if it had to be the same doctor, because we hadn’t seen the CCH doctors in two months. She checked and called back, saying that any doctor would do.

I indulged myself to a mini panic attack, and then I remembered our friend Sue, the nurse practitioner at the dialysis center. It was 8:30 A.M., so I called her cell phone. Not knowing that Sue was a night owl, my phone call woke her. Because I had texted her last night from the hospital, she knew that Dad had been in the emergency room. When I told her about our current situation, she came wide awake and said that she and Dr. Issac would refer us. She said that she could not make the referral, but she could write the order and Dr. Issac would sign it. The referral seemed to move from Sue to the Home Care office at warp speed. In a matter of minutes, Tracy called and said that she would arrive shortly to readmit Dad to Home Care. She arrived a few minutes after 9:00 A.M., just 30 minutes after my call to Sue.

Feeling like I could exhale again, I returned to work. Within 20 minutes, the doorbell rang, which was not unusual with all of the deliveries of medical supplies. A couple of minutes later, my mother entered the office and told me that an agent from Adult Protective Services was here to investigate our case. I took a deep breath and went to the family room to meet Brandi. She and I were quickly joined by Mom, Michell, and Dad. With a little assistance from Michell, Dad moved his wheelchair next to my chair. Brandi told us that although charges are made anonymously to APS, we could probably figure out who claimed that we were jeopardizing my father’s well being by removing him from medical care against best medical advice.

Before I responded to the charges, I felt that I needed to establish my credibility as someone who could be entrusted with the care of my father. I told her that I was very familiar with Child Protective Services (CPS), a similar state organization. Not only did I have friends who worked at CPS, but my husband and I had also been licensed by the State of Texas through CPS to adopt and foster children. I then proceeded to respond to the charges by listing all of the stellar medical advice that we had received from Scott & White, beginning in late April, and explained that because of our experiences, we were hesitant to accept medical advice. At the end of my story, which I relayed from copious notes on my iPad, she asked me why we still used the hospital. It seemed that she had also had a bad experience with Scott & White. The truth of the matter is that in central Texas, patients don’t have any decent viable alternatives. For all intents and purposes, Scott & White is the only game in town. At the end of our hour-long meeting, she said that she was closing the case as “an invalid claim.” Before she left, I gave her Sue’s office number so that she could speak with a health care provider who saw Dad on a weekly basis and who knew about the care that we were providing my father. I learned later that she had indeed called Sue before she closed our case.

I still hadn’t given dad his second dose of Flagyl. Because I had been concerned that Dad had had a bad reaction to the Flagyl, Dr. Clark had written me a prescription for a different antibiotic. I called Dr. Pfanner’s office and talked with Angie, the nurse, and she said that she would defer any decision about the two antibiotics to the nephrologist. I called Sue again and she urged me to give Dad the Flagyl. She said that Dad was probably dehydrated or was suffering from “dialysis dementia.” She was surprised that we hadn’t seen it earlier. She also said that until Dad was over the CDiff, they would limit the removal to 1,200 ml and then add fluid, which meant that I no longer had to worry about him becoming dehydrated from dialysis.

During Tracy’s visit earlier this morning, she told me that our aides needed to wear gowns when they cleaned up after Dad. American HomePatient didn’t have any, so I ordered some gowns from a company that I found on the internet, but they wouldn’t arrive for several days. In desperation, I drove to the dialysis center and spoke to Susan, Dad’s dietitian, about my dilemma. I asked her if I could borrow a few gowns and pay them back with new ones when I received my order. She left for a few minutes, and when she returned, she handed me an entire pack and told me that Sue said that we didn’t have to give them any of our gowns. As much as I complained about Scott & White, they did employ a host of angels of mercy.

Michell left this morning shortly after Gale arrived at 10:00 A.M. Before she left, Michell told me that she didn’t know if she would return and that she’d have to pray on it. Not only was she upset by Dad shoving her yesterday afternoon, but the deputy storming the house last night, followed by the investigation this morning, had shaken her up and taken her very much out of her comfort zone. I would do a little praying myself during the next week.

We spent the next hour updating an incredulous Gale about the events of the previous 24 hours. I wrapped up my day of work and finally logged off for the Thanksgiving weekend.

After lunch, I retired to the kitchen to bake some more biscotti. Gale worked with Dad on his exercises prescribed by Janet, the occupational therapist, and Kristen, the speech therapist. Gale also crushed ice for him to swallow.

By 2:30 P.M., Dad was ready for a nap. About an hour later, he was up from his nap, and he was ready for happy hour by 5:00 P.M. Since he had started swallow therapy, he had become a more active participant during happy hour and used this time to swallow ice chips, although he complained of a cold mouth.

What’s next, flying monkeys?

Published on August 22, 2017August 16, 2017 by mellowdee553 Comments

November 24, 2015. Dad and Michell woke up at 4:15 A.M. Dad still had some problems overnight, but I hoped to have him on the road to recovery quickly. I had Michell administer the trach care again this morning. I had to assist her a couple of times, but she was a little less nervous than she had been during her first attempt last night. During the administration of Dad’s morning meds, I added a couple of crushed Imodium tablets. Dad and Michell were able to get ready without much difficulty.

Kristin, Dr. Pfanner‘s nurse, called to tell me that the doctor had decided on an antibiotic for Dad that would take a couple of weeks to clear up the CDiff. The nurse also provided me with some guidance about laundering and cleaning anything that Dad had come in contact with. She also recommended that we purchase some isolation robes to protect ourselves and encouraged us to wear gloves. I told her that we would abide by her guidelines, but it sure seemed like the horse was already out of the barn. Dad had probably been sick with CDiff for several days. Because prolonged antibiotic use probably contributed to Dad’s CDiff, before hanging up, the nurse encouraged me to contact Dad’s pulmonologist to see if they would change his antibiotic. This was a difficult request. We weren’t going to meet Dad’s pulmonologist for a few weeks. I also thought that it was the infectious diseases doctor at the hospital who had prescribed the doxycycline, and I didn’t know when or if we would see her again.

I thought that the dialysis nurses should know about the diagnosis. I texted Sue, our friend and nurse practitioner at the dialysis center, to let her know that Dad had tested positive for CDiff.

When Dad and Michell returned home at 12:15 P.M., Dad was in a rush to get to the bathroom. As I was pushing him past the piano, I caught his hand between the wheelchair and the piano and gouged him good. His skin was very fragile and susceptible to tears, so now he was also bleeding. Because I had already helped enough, I left the chaos that I had created and drove to the pharmacy to pick up the antibiotic prescription. I returned around 12:30 P.M. and gave Dad his first dose of Flagyl. When I had a couple of minutes to talk with Michell, she told me that Dad had had 1,100 ml of fluid removed during dialysis. With his weight so low, this news wasn’t good, but at least the quantity wasn’t excessive.

It was Thanksgiving week, and I was working half days, starting at 3:45 A.M., so my day was over by the time that Dad returned from dialysis. Michell, Mom, and I ate lunch, and then I resumed the baking that I had started yesterday.

At 4:00 P.M., Mom tried to wake Dad, but he just grunted at her. He finally responded when she told him that he had his head on his sore hand—the one that I had injured. He then tried to get up by himself to go to the bathroom, which he’s incapable of doing. Michell tried to help him, but he told her to get out of his way. She finally got him into the wheelchair, and he kept telling her (and now me) to get out of his way. Michell kept trying to help him, but he kept shoving her away. She then got him the walker, but he pushed it into me and told me to get out of his way. During the arguing and raised voices, he called me by my mother’s name a couple of times, which I found a little disconcerting. He kept insisting that he could walk by himself. I finally stepped back and told him to walk. It took him about one second to realize that he couldn’t walk, and then he let us help him, although he still didn’t seem like himself.

In addition to the drastic personality change, he woke up looking different and years older than he had just four hours earlier. I checked the printout of precautions and side effects that came with the meds, and a couple of the severe side effects included confusion and irritability. I called Dr. Pfanner’s office and talked to the nurse about his drastic change and our concerns, and she said that she would consult the doctor and call back. When she called a few minutes later, she said that we wouldn’t like the answer, but the doctor wanted us to take him to the ER.

And then it got crazy.

When I called 911, I told them about Dad’s symptoms, and mistakenly used the word aggressive to describe his behavior. The 911 operator then started asking questions about weapons and alcohol and drug abuse, but I assured him that we didn’t have those concerns. Before hanging up, the 911 operator asked whether I felt safe hanging up the phone. I assured him that I did and made a mental note to never use the word aggressive during a call to 911.

Just a few minutes later, I heard the sirens, and a black SUV belonging to the sheriff’s department turned into the driveway. The deputy told me that the sheriff’s department is called whenever 911 receives a psych call. I assured him that I had not placed a psych call and that my father did not pose a physical threat to us. While we were talking, the deputy spoke into his shoulder mic and told two other deputies to “stand down.” Moments later the first fireman from Little River-Academy arrived. A couple of minutes later, the ambulance arrived, followed by another Little River-Academy fire truck. The EMTs, deputy, and I chatted on the front porch about Dad’s willingness (or not) to go with them. They asked about Dad’s wife and whether either of us had medical power of attorney, which we both possessed. The entourage of deputies and EMTs followed me into the bedroom, and I was able to talk Dad into going to the hospital. Michell rode in the ambulance with him and Mom and I followed them in my car. We sat in the driveway for what seemed like 10 minutes before the ambulance finally pulled out of the driveway. We finally arrived at the hospital at 6:00 P.M.

EMTs take the patient into the hospital through a designated door, separate from any visitors, including those who ride in the ambulance. I parked the car and Mom and I met Michell in the waiting room. While Michell left us to find a restroom, Dad, Mom, and I were ushered into an exam room. When the nurse arrived, I told her about the events of the day. When the resident, Dr. Stephanie Katrin Clark, arrived, said that Dad’s mentation problems could be from the CDiff and not the meds. She then ordered a chest x-ray to see if the lack of lung capacity was causing his confusion. She also ordered an EKG. Finally, the nurse arrived to take Dad’s blood. It was then that we learned that the reason why Dad’s ambulance stayed in the driveway so long was that the EMT was starting an IV. Having an IV in place simplified the nurse’s task, and she quickly acquired the necessary samples and turned them in to the lab shortly before 7:50 P.M. Before the nurse left the room, she started Dad on a saline drip.

At 7:49 P.M., I texted Sue to inform her that Dad had had 1,100 ml removed this morning and that he was now in the ER getting 500 ml of saline. I didn’t know if she could provide us with any information that might help our situation.

A little over an hour later, Dr. Clark returned to the exam room and said that she wanted to admit Dad. She said that his blood pressure was soft and he seemed dehydrated. I told her that we had to be home tomorrow for his 60-day home-care assessment. She said that she would give him another 250 ml of saline to improve his blood pressure. The next thing I knew, a tech arrived and said that she was to take Dad to radiology for a CT scan. I told her that it was our understanding that Dad could leave after he had received the 750 ml of saline and that I didn’t want him to have a CT scan. I also told her that he was out of Medicare days (and S&W Senior Care days), so admitting him was out of the question. After the tech had left the room, I explained to Dad and Mom that Dr. Smith had told me that Dad’s CT scan in August had not been normal, but he had then added that the CT scan of someone his age wasn’t normal anyway. I didn’t trust this doctor to say that the results of a CT scan weren’t normal, which would be another reason to admit him.

Shortly after the radiology tech left the room, we heard a knock on the door and a woman entered, identifying herself as the social worker and a problem solver. I again explained why we had to go home. My argument didn’t seem to sway her, so I told her that Dad was uninsured and that unless she could pay his hospital bill, I wasn’t interested in anything that she had to say. She left the room and returned a couple of minutes later with Dr. Clark and with the charge nurse. The doctor then informed me that Dad had suffered a heart attack. Today would mark the second time since July 22 that I had heard this, and I suspected that she was no more correct than the previous doctor had been. When I pressed her for details, she said that his numbers were elevated so that he might have suffered a heart attack. She also said that his kidney function was very high and that according to his medical history, he was very sick. I explained that his kidneys were in terrible shape and that he was ERSD and on dialysis. One of our problems was that the Scott & White Home Care department was not on the same records program as the hospitals, so the latest information accessible to the medical staff at Memorial was from September 29, some 57 days ago.

The social worker and charge nurse explained to us that to take Dad home, we would have to sign an AMA, which would ensure that he could not be recertified. They had effectively trapped us into a no-win situation. We didn’t trust them or the hospital, and even if we did, Dad was uninsured, and we had to get out of there. I told them that I wanted to make some phone calls. I called the Home Health after-hours phone number and told them about our situation. I was transferred to Leo, the night nurse who had originally admitted Dad into home care. My phone died, and when I used Mom’s phone, Leo and I kept getting disconnected. When the nurse returned to the exam room, we told her that we would sign the AMA so that we could take Dad home.

At 10:38 P.M., I texted Sue again and told her that Dad had been dehydrated and that we might need to rethink the amount of fluid we’re pulling off of him, especially when he has diarrhea. At the rate that he was receiving fluids at the hospital, it wouldn’t be long before they replaced everything that had been removed during dialysis.

Eventually, the nurse came back, and my mother told her that we were ready to leave. After we signed the AMA, the nurse removed the IV lines and called for an ambulance to transport Dad home. About 30 minutes later, the EMTs arrived with a gurney. Mom and I recognized both of the EMTs. One of them had been by the house several times and the other, a woman, had brought him home from dialysis earlier today. When the EMTs took Dad to the ambulance, Mom and I passed through the waiting room, where we found Michell, who had been waiting patiently for almost five hours. Michell quickly left the waiting room and joined Dad for the return ride home in the ambulance. Fortunately, we had been able to text with Michell, so she had some idea of what was happening.

The four of us finally arrived home around 11:15 P.M. I started cleaning up in the kitchen and toasted the biscotti that I had baked earlier. We were hungry and too wired to sleep, so Mom also prepared a plate of cheese and crackers. Michell was with Dad in the bedroom. The poor guy was suffering from CDiff and had been trapped in the ER for more than five hours.

At 11:45 P.M, we heard a loud pounding at the door. I peeked around the corner to see if I could tell who was at the door and was momentarily relieved when I saw the uniform of a sheriff’s deputy. When I opened the door, I met Deputy Ryan Blankemeier. He said that his department had received a call that we had taken Dad home from the hospital too soon and he was here to ensure that my father was OK. Deputy Blankemeier looked pretty confused when I told him that it was the nurse at the hospital who called for the ambulance to transport Dad home.

I told the deputy that Dad was on the commode and that he would have to wait until Dad was decent. From where we were standing in the hall, the deputy could hear Dad and Michell talking. After a while, the deputy said that he felt like he could leave, but I insisted that he stay. Eventually, Dad was decent, and I escorted the deputy to the bathroom to see him. I told Dad that the deputy wanted to ensure that he had gotten home OK. He said that “she” got home OK. I told Dad that it was him that the deputy cared about, and Dad said that he was fine, but it was “touch and go there for a while.” Dad laughed, and the deputy smiled. I eventually escorted the deputy to the front door shortly after midnight.

It was well after midnight before Dad was in bed and approaching 2:00 A.M. before I got to bed.

I hadn’t realized how upset Michell had been about the day. I had mentioned in an earlier post that she was astonished when I openly disagreed with a doctor. To sign an AMA and bring Dad home, followed by the visit from the sheriff’s department, was just a bit too much for her. After Dad had gone to sleep, she called a friend and cried about the day and then cried herself to sleep. At this point, she wasn’t sure if she would return next week and would have to pray for guidance. I hoped that she said a prayer or two for all of us.

The diagnosis

Published on August 15, 2017 by mellowdee55Leave a comment

November 21, 2015. Despite the howling winds that blew through town overnight, I slept well, waking up only a couple of times when I heard Dad coughing. I got up early and woke Dad and Michell shortly after 4:00 A.M. Dad woke up slowly and had another difficult morning. I administered another dose of Imodium in his G-tube, along with his morning dose of Midodrine, which would help raise his blood pressure during dialysis. Michell and I also had the fun task of collecting a stool specimen that we had to drop off at the dialysis center.

When Michell and Dad were picked up by the EMS wheelchair van service, Stan and I drove to the dialysis center. I had been very upset that they had removed 2,500 ml from Dad on Thursday, and I intended to express my concern to the charge nurse. For each 1,000 ml removed, a dialysis patient loses 1 kg. After I had explained Dad’s situation, she said that they would just clean his blood today and not remove any fluid from him.

I remained at the dialysis center with Dad until he was weighed, which would determine his wet weight. Instead of gaining weight since his last session, which is what typically happens with dialysis patients, he had lost weight. He now weighed 128 pounds, five pounds less than his dry weight on Friday. Although two dietitians were now monitoring his nutrition, I was very concerned about his weight. I know that Michell was concerned when she learned how much the nurse planned to remove, she didn’t feel that she was qualified or entitled to question their judgment.

After I saw Dad weighed, Stan and I left Dad and Michell at the dialysis center so that we could run several errands before Dad returned home. Everything worked in our favor, and we were home by 10:30 A.M. As it turned out, Stan and I didn’t have to rush. Dad and Michell had to wait for the van and didn’t return home until after noon.

As soon as he got home, I administered Dad’s trach care and meds. Following dialysis, Dad usually was ready for a nap, but not today. During the storm last night, we had wind gusts up to 40 MPH that ushered in a cold front, and we lost a roof shingle. As soon as I was finished with Dad, he was ready to discuss with Stan how to replace the shingle.

Shortly before 2:00 P.M., Dad took a long nap on the couch while we were in the living room because he didn’t want to be away from us. I think that he thought that sleeping on the couch would ensure that he didn’t miss happy hour, but he slept through it. Dozing on the couch might not seem like a big deal, but it was another first for him in his post-hospital life. We had to rely on the oxygen tank and trach bib because we couldn’t bring the oxygen concentrator and nebulizer to the living room, but he was able to receive Nepro during his nap. He slept for about four hours, and we woke him when we finished dinner.

We played cards again, and Stan was tonight’s winner. Shortly after 8:30 P.M., we started our bedtime routine, and by 9:10 P.M., I was heading upstairs. I had been concerned that, after sleeping for so many hours today, Dad wouldn’t be able to sleep, but he was snoozing before I left the room. Since lunchtime, I had been feeling like I was coming down with a cold, so I took some Nyquil before bed. Even if it didn’t help fend off a cold, it would help me sleep.

At 10:30 P.M., the baby monitor station in our room started alarming. After quickly putting on my glasses, I could read the message on the display that indicated that our station was unlinked from the base station. As I tried to turn on the light, I discovered that the power was out again, which was why the monitor was unlinked. I called the power company, whose phone number was now stored on my iPhone, and listened to the recorded message stating that the power would be restored by12:30 A.M. I went downstairs and checked on Dad and Michell. Although the baby monitor alarm was also sounding in their room, it was the silence of the oxygen concentrator that first woke Michell. When I entered the room, she was setting up an oxygen tank next to Dad’s bed. I called the power company again, and the recording had been changed and now stated that they didn’t know when the power would be restored. The power came back on at 3:30 A.M. as Michell was replacing Dad’s empty oxygen tank.

November 22. After the interrupted night’s sleep, I finally woke up when I heard Michell telling Dad that it was 6:00 A.M. When I entered the master bedroom, my first thought was that Dad seemed as sleepy as I felt. However, his movement seemed unnaturally slow. Right after he finished washing his face and brushing his teeth, Michell checked his oxygen saturation level, and it was 74%, a severely low level. I then noticed that I didn’t hear the soft hissing sound from the oxygen tank that I heard when the oxygen was flowing. When I checked the tank, the valve was in was in the off position, which surprised Michell. She was sure that it had been on and thought that Dad must have leaned against the key and turned it off. We quickly put him back on the bed, removed his speaking valve and gave him unobstructed oxygen from the concentrator and nebulizer. After 30 minutes, I still wasn’t happy with his oxygen levels, so to rule out any chance of an obstructed airway, I changed out his trach. For the past couple of weeks, we had been slowly reducing the amount of oxygen that we administered from the oxygen tanks and his oxygen saturation levels had remained high. I now decided to increase his oxygen level back to two liters, which is where it was when he was discharged from the CCH almost two months ago.

By 8:00 A.M., Dad was back in the wheelchair and was reading the Sunday newspaper. When Mom and I left for church, he and Stan were playing cribbage. After a couple of games of cribbage, Dad wanted to lie down and rest. According to Michell, he fell asleep as soon as his head hit the pillow. Usually, he liked for us to wake him before Stan left for Houston, but today he asked that we let him sleep.

We finally woke Dad and helped him out of bed shortly after 3:00 P.M. He was up for the rest of the evening, and Michell was able to get him to run through some of his swallow-therapy exercises. Dad rested in his room again while we ate dinner, and he was ready to play cards when we were finished eating. By 8:20 P.M., we were finished with cards and starting our nighttime routine. Less than 25 minutes later, we had finished administering the meds and trach care, and Dad was sound asleep.

November 23. Dad was very slow in waking up this morning. When I heard him and Michell talking, I took a break from work to administer his morning meds and trach care. Tracy, one of our RNs, called around 9:00 A.M.to see if we could be her first stop this morning. I was very low on the Mepilex dressings that American HomePatient didn’t provide and asked Tracy if she could bring me a few to tide me over until I could order more from Amazon. She said that she would stop by the office and pick up a couple for me. I was very fond of Tracy. She was a wonderful nurse and the mother of a special needs child. She was one of my favorite nurses and a very caring person. She arrived at my parents’ home at 10:00 A.M. with my requested dressing in hand. After her brief examination of Dad, she said that his bed sore was practically healed. With the way that Dad had been feeling, I didn’t want to take him back to the wound care doctor, which would most likely take the entire afternoon. She said that I could safely cancel his appointment with wound care today. Also, she didn’t think that I would need any more of the expensive Mepilex dressings. I happily accepted the good news and canceled the appointment with the doctor and the EMS wheelchair van service.

While Tracy was visiting, Dad spent the entire time either sitting or lying on the bed, so she didn’t see how weak he had become. Shortly before Tracy arrived, Michell had had to hold up Dad to keep him from falling when he was trying to get dressed. I hoped that we would hear something soon from Dr. Pfanner’s office.

I contacted Kathleen, the physical therapist, to see if she could come over today to take care of Dad’s 60-day assessment for Medicare. As part of the assessment, the Scott & White Home Care providers would recommend an additional 60 days of home care. Unfortunately, because the health care providers can’t perform their assessments more than five days before the assessment due date, which was this coming Saturday, the earliest that she could stop by would be Tuesday, which was a dialysis day. According to Kathleen, the therapists and the nurse would arrive on Wednesday to perform their assessments. After a couple of phone calls, she and I decided that to avoid a massive traffic jam of providers, she would conduct her assessment on Thanksgiving Day. I was impressed how everyone was willing to work on and around one of the biggest US holidays of the year. For us, every day had become basically the same, but these people all had families and lives outside of work. My only concern had to do with Dad’s diminishing strength and that he might not be able to exhibit progress during his assessments.

Shortly before noon, Michell helped Dad with some of the exercises prescribed by the occupational therapist and then she, Mom, and I helped him walk from the kitchen to the bedroom.

Kristen arrived at 2:15 P.M. for Dad’s speech therapy session, but he was sleeping. I had thought that we would not see any of the therapists until next week, but Kristen said that she was not part of Kathleen’s team, plus, she had just started treating Dad. To enable Dad time to wake up, she said that she would visit with her next patient and return in about 90 minutes. She returned shortly before 4:00 P.M., and she and Dad had a good session.

I worked only a half day today and ended the day around the time that Dad woke up. I retired to the kitchen and baked a couple of batches of biscotti. I needed to get my annual baking underway, but I felt guilty for baking something that Dad liked but could not eat. It didn’t help that the aroma of the biscotti wafted throughout the house.

Late in the day, Dr. Pfanner’s nurse called and said that Dad tested positive for CDiff. She and I discussed some antibiotics that he could take for it, but she would need to consult with the doctor and get back to me. Evidently, Dad’s G-tube was causing them to rethink which medication to prescribe. It was ironic that this infection was probably caused by Dad’s long-time usage of antibiotics, yet it would take another antibiotic to get rid of it. It was terrible that he had contracted this infection, but at least we knew why he had had this terrible diarrhea and that he would soon have medication to treat it.

I would need to leave town again for a day or two in early December. I had asked Michell if she would consider administering trach care and the meds while I was gone. I told her that Gale had performed these same tasks while I was gone a couple of weeks earlier. Michell had worked in nursing homes before she took a position with One On One Personal Homecare Services. In nursing homes, she would not have been permitted to perform either of these tasks. The rules of home care were at the discretion of the home care providers, namely me. I encouraged her to speak with Gale to see how she had managed. Truth be told, Michell had already performed tasks here that would have been off limits for her in a nursing home. Fortunately, Michell said that she would agree to be trained by me and give me her final decision after she had a chance to speak with Gale. During our nighttime routine, I showed her how to administer the trach care. She was nervous, and it would take a bit more practice with her, but I had to give her credit; I don’t know if I would have been willing to assume responsibility for the trach care had I been in her shoes.

Derailed on the road to recovery

Published on August 8, 2017August 9, 2017 by mellowdee55Leave a comment

November 18, 2015. Dad had a good night. I slept well and woke up a bit earlier than usual, getting an early start at work. I didn’t know when Gale and Dad woke up, but I started hearing Gale’s voice coming from the bedroom a few minutes before 7:00 A.M. The Imodium that I administered in Dad’s tube feed last night seemed to be working, and he looked very perky when I administered his meds.

Because he was feeling better, it seemed like a good time for me to take a break and change his trach. I set up my TV trays to do that. I still hated this weekly task, and I had a knot in my stomach throughout the procedure, but I was accomplishing it in less time.

Michell arrived for her week with us shortly before 11:00 A.M. Gale updated her on Dad’s recent health challenges and progress and showed her the handout of Dad’s new swallowing exercises. Shortly after Michell arrived, I administered another dose of Imodium into Dad’s feeding tube, along with his midday meds.

Brenda was scheduled to arrive for Dad’s physical therapy session at noon. When she hadn’t arrived by 12:30 P.M., Dad decided to lie down and rest. Brenda finally arrived at 1:00 P.M. for Dad’s session. Considering that he had not felt well enough to exercise the past few days, he did pretty well during his session and had a very good workout.

Kristen arrived promptly at 2:00 P.M. for Dad’s second swallow therapy session. Mom’s book club met on Monday, so Mom hadn’t been at home for Kristen’s first session with Dad, but Mom met Kristen today, and she really liked her. Kristen put Dad through his paces, exercising his neck muscles. Like Gale, Michell sat in on these sessions so that she could coach Dad with his exercises on days when he did not have therapy. Earlier in the day, Adan, the manager of the therapists with Scott & White Home Care, had called me to ask about our Monday session with Kristen. I told him that I had been very pleased and was very optimistic about Dad’s chances. He told me that to ensure that Dad would be successful, he, Kristen, and I would work together to determine the perfect time for Dad to have the modified barium swallow study (MBSS).

About 30 minutes after Kristen left, Sally and Ray, dear friends of my parents (and me) stopped by for a visit. In about a month from now, they would move from Temple to New Braunfels. I saw Sally only a few times a year, but she is a delightful person and fabulous quilter and crafter of cards. Her husband, Ray, is also an interesting person who had been involved in the space program, another one of my interests. I could practically recite the dialog from the Apollo 13 movie, and Ray had been involved with this launch at NASA. I would miss them both after they moved from Temple. Dad came out for a few minutes to visit with them. The visit lacked our usual spontaneous conversation. They hadn’t seen Dad in almost a year, and I suspect that his appearance was a little shocking and was the proverbial elephant in the room. It didn’t help that Dad wasn’t feeling well.

Shortly after Sally and Ray left, I administered another Imodium pill into Dad’s feeding tube. Although he was feeling a bit better, he still was not better.

After dinner, we played cards, and I won, which indicated that I was improving as a scorekeeper.

After Michell helped Dad get ready for bed, she went to her room to change her clothes for bed. While she was out of the room, I administered Dad’s nighttime meds and trach care. During the trach care, I noticed that his trach was moving around—a lot. I quickly saw that there wasn’t anything holding it in place. Seconds later he said that he felt sick. I grabbed a small red plastic basin from the bathroom, applied some pressure to his trach, and turned on the suction. Eventually, he felt well enough to hold the front of his trach while I tightened the collar which had somehow become loose. It took about 30 minutes to get him to the point where he felt well enough to lie down and try to sleep. From what I could surmise, one of two things had loosened his trach collar since this morning. Either the swallowing exercises had loosened the trach collar, or his shirt collar had been caught under his trach collar when I changed out his trach. Regardless of the reason, Dad and I were both a little rattled by the experience. Michell returned to the bedroom shortly after I had adjusted the ties on the trach collar. This incident was another example of how quickly his situation could change and why we couldn’t let down our guard for a minute.

November 19. I woke Michell and Dad at 4:00 A.M. Michell got up, but Dad continued to doze. Michell had a difficult time getting him out of bed, and when she did, he kept falling asleep on the commode. When Dad moved home after being discharged from the CCH, we had purchased a box of Depends. Dad had flatly refused to consider them, but today he didn’t want to go to dialysis without them, which was an indication of just how bad he felt. It seemed as if his condition was becoming serious. I was thankful that we had an appointment with a gastroenterologist tomorrow.

For the first time since he had come home, some 52 days ago, he was not ready when his transit service arrived.

During his dialysis session, Dad had the nurse call the EMS dispatch office 15 minutes before his session was scheduled to end so that he wouldn’t have to wait any longer than necessary for his ride home. When Michell told me that they had removed 2500 ml from him, I was flabbergasted. When he left there, his dry weight was 138.28 lbs. He was probably dehydrated when he got there, and then they removed over two liters of fluid from him. I couldn’t help but question the judgment of the nurse who made the decision to remove almost twice the usual amount of fluid.

When Dad and Michell arrived home at 11:15 A.M., Dad was wiped out and was not feeling well. Within a few minutes after getting back on the bed, he was nauseous, and his trach collar was loose again. I tightened the collar, but he still didn’t feel well. I was becoming very concerned about him and called the Home Care nurse. Stephanie was working today and arrived shortly before 1:00 P.M. in response to our call. After checking Dad, she said that heard congestion in his lungs that she had not heard before. Also, his oxygen saturation never exceeded 93% while she was there. My concern for Dad escalated when Stephanie advised me to call 911.

Stephanie stayed with us until the ambulance arrived and then provided the EMTs with his current status. When she left, the EMTs listened to his chest and ran a bedside EKG. They said that they didn’t notice the congestion that Stephanie had mentioned and that his EKG appeared to be normal. Dad was still complaining about his stomach and nausea. They said that they didn’t see any urgency in taking him to the emergency room, but they would take him if we wanted them to. Dad was already taking a cocktail of drugs that included antibiotics, so I decided to get him something for nausea and let the EMTs leave.

Although Dad’s condition wasn’t any better, I was somewhat relieved by the EMTs’ assessment, and that we were able to avoid the emergency room. Dad was scheduled to see the gastroenterologist tomorrow, so I just needed to get him through the night. I called Sue, and she refilled Dad’s prescription of ondansetron (Zofran). Mom drove to the pharmacy as soon as I got off the phone with Sue. By the time that she returned home with the prescription, Dad was in a deep sleep. I eventually administered the Zofran in his feeding tube shortly before 5:00 P.M.

We finally woke Dad around 7:00 P.M. He said that he felt better, and his sense of humor was on display. I gave him his evening meds and then encouraged him to get up, which was a mistake, because he thought that it was morning. He was very confused and disoriented and wanted to go into the bathroom so that he could wash his face and brush his teeth. Michell and I finally convinced him that it was nighttime, and got him into his night clothes and back in bed by 8:30 P.M.

November 20. After working for a couple of hours, I went to Dad’s room to wake him and Michell. Usually, they don’t have to get up early on Fridays, but today Dad had an appointment with the gastroenterologist, and the wheelchair transit van was scheduled to arrive at 8:30 A.M. Dad slept through the night, but he wasn’t feeling very well when I woke him. The diarrhea continued to plague him. Between his dehydration from the diarrhea and the dialysis session yesterday, he was shaky and unsteady.

We were ready when the van arrived five minutes early. The van transported Dad and Michell to the clinic, and Mom and I followed in the car. The clinic was located less than five miles from my parents’ home and after locating the doctor’s office and paying the co-pay, we were seated in the waiting room a good 20 minutes earlier than the 9:20 A.M. appointment. When they weighed my 6’1” father, his weight was 134.3 lb, which was less than it had been when he left dialysis yesterday. We waited almost an hour in the waiting room before we were escorted to an examination room. Exam rooms aren’t very large, and they can seem downright tiny the patient is in a wheelchair and is accompanied by a three-person entourage.

After waiting for a few minutes, Julianne and Talitha, the dietitian and nurse, arrived. I really liked them. They were very attentive, and among other things, they confirmed that Dad had a G-tube (and not a J-tube, as Dr. Klovenski had insisted on October 18). While we were there, they changed out Dad’s G-tube, which should be done every month. Julianne considered changing his formula from Nepro to something else but decided that they should test Dad first to ensure that his diarrhea wasn’t caused by his 5-1/2 month liquid diet of Nepro. When Dr. Timothy Pfanner arrived and reviewed Dad’s chart, he said that Dad could have bolus feeds, but not until he was over whatever was causing the diarrhea. To rule out CDiff, the doctor wrote an order for some lab work. I know Dad hadn’t been feeling well, but it was a nice coincidence that we happened to have an appointment with the gastroenterologist at this time. As we left, I scheduled a follow-up appointment for Dad and called the transit service to pick up Dad and Michell.

Mom and I arrived home shortly after 11:15 A.M. Dad and Michelle were not picked up by the van until 11:30 A.M., and it was almost noon before they arrived. Dad was pretty tired by the time he got home. He was scheduled for a physical therapy session in a couple of hours, so I administered some meds and Michell helped him back to bed for a nap.

Brenda arrived shortly after 1:00 P.M. for the physical therapy session, but Dad was wobbly and was unable to execute transfers between the bed and wheelchair with the walker.

Friday wasn’t his usual day for physical therapy, but next week was Thanksgiving, and the therapists were adjusting their schedules for the holiday. Dad was scheduled to have his 60-day evaluation with Kathleen next Wednesday, so he wouldn’t be able to have therapy again until after her evaluation. I told Brenda that we would work with Dad and have him walk between now and then. Brenda said that he should not be walking. I was a little surprised because the other therapist, Lara, had had him walking. I was tempted to tell her that we had already been walking with him, but thought better of it.

After Brenda had left, Dad napped for a short time before Janet arrived for his occupational therapy session. Occupational therapy treatment wouldn’t be reviewed by Kathleen for Dad’s 60-day evaluation, so Janet would return for another session next Wednesday, the day before Thanksgiving. After Janet left, Michell coached Dad through some of his speech exercises.

Stan left work early and drove from Houston to my parents’ home. He arrived shortly after 5:00 P.M. and just in time for happy hour. Shortly after 6:00 P.M., Dad went to his room and read the paper while we had dinner. After dinner, we played Oh Hell and hit the hay pretty early.

It had been a long week, and I was glad to have Stan with us for the weekend. Dad had seemed to have been progressing, with only little blips along the way. This week it felt like our progress had been derailed, and I hoped that after our visit with the doctor today Dad would get back on track.