Visions of a good night’s sleep danced in my head. If only.

December 22, 2015. I was taking this week off from work in observance of the Christmas holiday. Dialysis didn’t take a holiday, and we were all up early to prepare Dad for his 5:50 A.M. HOP pickup. While Dad and Michell were away, Mom and I attacked our list of chores and errands.

VisionsCross1My most important errand was my appointment with Adan at the Hospice and Home Care Center office, located across the parking lot from the Scott & White CCH. I had spoken and texted with him several times, but we had never met. I was looking forward to meeting with him and reviewing the results of Dad’s MBSS. In addition to what we had been told yesterday, which was that Dad had to avoid thin liquids, the report also contained a list of foods that he could eat. Adan also told me about a thickener that I could purchase at Walgreens that would thicken a thin liquid.

As Dad started this next stage of his recovery, we had to be careful about what we gave him to eat and I had to inspect what I suctioned from his trach during trach care. If the secretions had any color, I might be suctioning food from his trachea, which would mean that he had aspirated the food. To ensure that I didn’t confuse blood with food, we were advised to avoid red food. To further complicate matters, we also had to avoid feeding him white food, like potatoes and oatmeal—unless we colored it—because I would not be able to distinguish aspirated white food from normal secretions.

By the time that I had returned from my errands, Dad and Michell had returned from dialysis and Dad was taking a nap. When he woke up at 1:30 P.M., Michell was horrified to see him sit up and swing his legs over the side of the bed. Fortunately, she had been sitting in the room and was able to stop him from standing up.

VisionsCross3When Dad was safely transferred to his wheelchair, I told him about my visit with Adan and the report from Dr. Sherrard. He had hoped that the report would contain more foods, but he seemed to accept his restricted diet for the time being. We had been advised that Dad could eat a cup of food at a time, but Dad now announced that he would eat no more than 1/8 cup of anything during a meal because he didn’t want to get fat. I started to challenge him on this proclamation but quickly stopped after he seemed to dig in his heels about the matter. I told him that we could not cut back on the Nepro if he didn’t eat more, but he wouldn’t budge. It was becoming very apparent that I came by my stubbornness honestly.

Mom and I delivered bread to some of her friends and then stopped by the pharmacy to pick up some prescriptions for Dad. We returned home just as Dad was waking up from his second nap. Mom and I had decided that mashed sweet potato would be the perfect food for Dad. Not only was it tasty and easy to mash, but it was also nutritious and orange. I prepared several servings in ¼-cup containers. As I handed him his first serving, he said that he didn’t like sweet potatoes and that he would not eat such large servings.

He and I launched into a heated discussion. For starters, the news that he didn’t like sweet potatoes was a shocker because he’d been eating them all of my life, if not longer. I wanted him to follow the advice of the doctor and speech therapists. I was steamed. We had been through too much to screw up his recovery. After he said that he’d eat what he wanted, I told him that he could either follow instructions so that he could get better, or I was gone. Ready or not, my planned departure date was February 1, a little over a month from now.

VisionsCross1We were going through an unexpected transition. While he had been very ill and weak, I had been able to administer the prescribed care. As his health improved and he regained some strength, he was trying to regain control over his life. I couldn’t really blame him, but I had hoped that we’d be pulling together. We had had some little skirmishes during the last few weeks—starting with when he wanted to graduate from an electric shaver to a razor—but this argument seemed more intense, and it didn’t help that neither of us felt well. When Dad and I were on the same side of an issue, we were a force to be reckoned with. However, when we squared off, we could argue like nobody’s business, and our arguing usually upset Mom. At her pleading, we ratcheted down the intensity somewhat and talked in a more civil tone. I backed down, but I was determined that he would be eating more than two tablespoons per meal by the time that Kristen returned after Christmas.

For all my talk about wanting him eating more, the fact that he was now eating made me very nervous because of his history of aspirating. In addition to keeping a watchful eye on what I suctioned from his trach, I also closely monitored his oxygen levels in the event that he aspirated without leaving tell-tale signs in his trach.

We played cards after dinner, and I won. When I called Stan after Dad had gone to sleep, Stan told me that he would not be here until midday on Christmas Eve. The second half of my day had been stressful, and this news was the proverbial straw that broke the camel’s back and I all but hung up on him.

December 23. Dad had a good night’s sleep, but I woke up every time that he moved around in that creaky hospital bed. It didn’t help matters that I went to bed feeling like I was coming down with a cold. When I woke up at 12:30 A.M., my throat felt like it was on fire. I took some Advil, which seemed to help. During more bed creaking sometime around 1:30 A.M., I remembered that I left a lumen print outside. Rain was forecasted for the night, so I got out of bed and retrieved it.

Sometime around 5:30 A.M., I heard Dad again, and I went downstairs to check on him. He seemed ready to get up, but shortly after transferring him to his wheelchair, he wanted to return to bed.

VisionsCross2Michell finally got Dad up and ready for the day at 6:30 A.M. For breakfast, I served Dad two tablespoons of green oatmeal, which looked about as appetizing as it sounds. After finishing his oatmeal, Michell prepared some shaved ice for him, which he ate.

Becky, the owner of One on One Personal Home Care, called and gave us the disappointing news that Katherine would not be returning. Instead, Dianne would replace Gale for the foreseeable future. Dianne had replaced Amanda during Dad’s second week home. We had liked her and were pleased with this news, although nobody could replace Gale.

Michell told me that Dad was insisting that he wanted to get on the bathroom scale to weigh himself. I told her that we’d let him, but that the two of us would help him get on and off of the scale to ensure that he didn’t fall. With his shoes on, he weighed 134.5 pounds. He was dreadfully thin and desperately needed to gain a little weight. I could feel all of his bones across his back and ribs. Getting on the scales probably wasn’t one of his physical therapy goals, but it was a little victory for him.

Michell started coaching Dad through his swallow therapy exercises, but Dianne arrived before they finished. Before Michell left, I gave her a gift card for Christmas from Stan and me. Shortly after she left, Tracy, the nurse, arrived and was soon followed by Janet and Brenda, the occupational and physical therapists.

VisionsCross2After Brenda left, I prepared a nice bowl of green mashed bananas for Dad’s lunch. Per his specifications, I served him a mere two tablespoons of the banana and ate the rest myself, but without the green food coloring. I still found it unbelievable that he preferred the nasty green bananas over the sweet and natural-colored sweet potatoes.

After he finished consuming his green lunch, Dad was ready for another nap. While he slept, I ran a few pre-holiday errands. I was still feeling pretty lousy, and when I returned home, I was ready for a nap. When I woke up, I found Dad and Dianne sitting outside on the patio. It was a beautiful day, and the temperature was in the low 80s, which was seasonably warm for two days before Christmas. It was such a nice evening that Dad wanted to stay outside and have our happy hour on the patio.

Although Dad received a clean bill of health and accolades from the therapists and the nurse, he had coughed up a lot of secretions today. I didn’t see anything that looked like one of his colored meals. I was a little concerned about the yellow yogurt that he ate for dinner because I probably couldn’t distinguish it from his secretions.

Dad won at cards tonight, and we were all tucked in bed by 8:00 P.M. There was no doubt about it; I was down with a wicked chest cold.

VisionsCross3December 24. We had a terrible night. Shortly before 2:00 A.M., I heard a gurgling sound coming from the baby monitor. I ran downstairs and saw that Dad’s speaking valve had blown off of his trach, he was sleeping on his side, and secretions were spewing out of his trach and onto his bed. I woke him, disconnected him from the tube feed and oxygen concentrator, and sat him on the side of the bed. During the 45 minutes that we sat on the side of his bed, he coughed and suctioned up at least 1/2 cup of secretions. When his secretions seemed to be under control, I helped him back into bed and checked his temperature and oxygen levels, and both were good. Dad drifted back to sleep, and I trudged back upstairs to bed.

When the alarm went off at 4:00 A.M., I could not get out of bed. I was now suffering from this danged cold, and an interrupted night’s sleep hadn’t helped matters. While I was contemplating whether or not to move, I heard Dianne tell Dad that they would have to ask me about something, so I decided that I needed to get up now.

It seemed that Dad was feeling pretty weak and didn’t want to go to dialysis. I told him that he had to go today. Because of Christmas, the dialysis clinic was closed tomorrow, so he couldn’t postpone today’s session. He acquiesced and started to get up and get ready to go. I felt terrible for him. With the kind of secretions that he had, I suspected that we were both suffering from chest colds. As bad as it was for me, it had to be terrible if you couldn’t handle the extra secretions caused by a cold.

VisionsCross1Dianne hadn’t been to the dialysis center since early October, and there wouldn’t be anyone there today that knew Dad’s normal routine. To ensure that he would be OK with the new aide and the holiday crew, I followed the HOP to the dialysis center, and I was glad that I did. The “C” team was on duty; they had never dealt with a trach patient, and his station was not equipped with a suction machine or a wand. I also wanted to ensure that they didn’t remove too much fluid and dehydrate him. The last thing that we needed today was a repeat of Thanksgiving’s visit to the hospital and subsequent visits from Deputy Blankenmeier and Adult Protective Services. When everything was set up for him and I felt that he would be OK, I returned home.

Stan arrived at my parents’ house just before 10:00 A.M. Shortly before 11:30 A.M., Dad and Dianne arrived home. They had left the dialysis center at the stroke of 11:00 A.M. and were the last ones on the bus and the first stop on the return trip. According to Dianne, Dad coughed up and suctioned about as much during dialysis as he did last night. He was feeling weak, so we transferred Dad to the bed and administered his midday meds. Before he could fall asleep, he started vomiting, probably because of his CDiff pill. His stomach was practically empty, but I was always scared of aspiration when he vomited.

After Dianne and I got him cleaned up situated for his nap, we were ready for our lunch. I didn’t want him left alone, so I ate lunch in his room. When she finished her lunch, Dianne stayed with Dad while Stan and I ran some errands.

Dad slept for most of the afternoon and was still asleep when Stan and I returned home. Dad woke up briefly for happy hour but wanted to lie down again while we ate dinner. He still felt a little queasy and didn’t want to eat dinner, so he opted for his Nepro diet.

All that napping must have paid off because he won tonight’s game of Oh Hell.

VisionsCross3Dad’s normal temperature ranged between 97.2 and 97.6 degrees. After he went to bed, his temperature started rising. By 9:30 P.M., his temperature had reached 99.2, prompting me to call the after-hours nurse. At 10:30 P.M., Dad’s temperature returned to 97.2, and I went to bed. After I finally fell asleep, Leo, the night nurse, returned my call. Leo told me that I shouldn’t take Dad’s temperature more often than once every four hours and that Dad’s temperature was still within normal range. After that little dressing down, I went back to sleep.

I had always been the first one up on Christmas morning, but all I wanted for Christmas this year was a good night’s sleep.

 

In my mind, everything was riding on the MBSS

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.

crossNavyI 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.

crossNavyStarKristen 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.

crossNavyIn 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.

crossNavyI 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.

crossPurpleOur 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.

crossPurpleWhile 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.

crossNavyAfter 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.

crossNavyBrenda 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.

crossNavyStarWhile 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.

crossNavyStarThe 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.

crossNavyStarMichell 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.

jalenpenoKristen 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.

crossNavyStarDuring 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?

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.

spidersSnakesCrossWhen 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.

spidersSnakesCrossMom 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.

spidersSnakesCrossDuring 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.

spidersSnakesCrossToday, 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.

spidersSnakesCrossWhile 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.

spidersSnakesCrossDecember 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.

spidersSnakesCrossDad 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.

spidersSnakesCrossWhen 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.

IMG_1344Today, 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.

spidersSnakesCrossThe 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.

spidersSnakesCrossIt 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

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.

kangarooPumpAs 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.

unhappycrossAt 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.

happycrossBecky 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.

unhappycrossAfter 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.

unhappycrossAt 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.

happycrossDecember 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.

unhappycrossMy 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.

happycrossWhen 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.

happycrossShortly 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.

happycrossKristen 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.

happycrossFrom 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.

happycrossKatherine 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.

trumpetPlantMy 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.

unhappycrossDad 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.

unhappycrossBy 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.

happycrossDuring 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

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.

cloudSunShortly 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.

cloudSunI 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.

cloudStormy02December 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.

leavesLargeDuring 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.

cloudSunDecember 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.

cloudStormy03 copyDad 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.

darkCloudSmDecember 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.

darkCloudSmAt 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.

cloudSunWithin 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.

darkCloudSmSince 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

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.

medicalCrossThe 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.

wheelchairShortly 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.

walkerGale 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.

 

A relative calm after the storm

November 26, 2015. It was Thanksgiving Day, and I was feeling grateful. I woke up at 4:30 A.M., which might seem too early for a non-dialysis holiday day, but I wanted to work a couple of hours to catch up after all of the distractions of the previous two days. Among other things, I was grateful to have a job and supportive management, which enabled me to keep working while my mother and I took care of my father.

cloudStormy03 copyDad and Gale slept until 6:45 A.M. Along with the water that we normally used when administering his meds, during the day, I planned to administer two additional cups of water into Dad’s G-tube to help avoid any more issues with dehydration.

My husband, Stan, arrived from Houston around 10:00 A.M. and found Mom and me in the kitchen, and Dad and Gale outside on the patio enjoying the seasonably nice weather. On any other Thanksgiving Day, you’d find us preparing the turkey and traditional side dishes to serve with our turkey, but not this year. Instead, this year we would set aside our family food traditions and consume a simple dinner of comfort food. I could not bear the thought of filling the house with traditional aromas—aromas of food that Dad could not enjoy.

cloudStormy02Not all of our traditions fell by the wayside, however. Dad and Stan still enjoyed the traditional football games and spent many hours visiting. I gave Dad some ice chips and encouraged him to practice swallowing. Because watching football could be so exhausting, Stan and Dad recharged themselves by napping after lunch. At 4:00 P.M., Gale woke Dad and I woke Stan. Stan and I went to Walgreens to purchase some medical supplies, and Gale tended to Dad’s wrist, which I had accidentally wounded a couple of days earlier.

During our happy hour, we shared thoughts about what we were thankful for during the year. For me, it was Dad, Stan, Mom, and Gale. I was also grateful for my friend Rhoda, who stayed with me when both of my parents were hospitalized, and my cousin Chris, who stayed with us for a week in June. I was also very grateful for Sue, our friend and nurse practitioner who rescued us from a dire situation just yesterday. And, finally, I was also thankful for Drs. Issac and Smith and many of the wonderful nurses, who treated Dad like their parent.

During our non-traditional spaghetti dinner, Dad retired to his room. After dinner, we played Oh Hell, and I won. At 8:30 P.M., we started preparing Dad for bed by administering his nightly meds and trach care.

cloudSunNovember 27. Dad had a very restful night, which meant that we all slept well. He called for the urinal around 1:00 A.M., and then slept until Gale woke him at 4:00 A.M. Because of the Thanksgiving holiday, the Thursday dialysis sessions had been rescheduled to Friday. The EMS dispatch office called a couple of times to adjust our pickup time and finally settled on 5:45 A.M. Before Dad and Gale were picked up, Gale told me that she thought that the Flagyl seemed to be addressing the effects of Dad’s CDiff.

At 11:03 A.M., Gale called me from the wheelchair van to let me know that she and Dad had been able to get a ride back home immediately after Dad’s dialysis session. Shortly after they arrived home, Dad retired to the bedroom for a nap. Before he drifted off to sleep, I administered his meds and trach care. Gale started complaining about hip pain and said that she was taking Advil to reduce the pain. She mentioned that the last time that her hip went out on her, she was out of commission for three weeks.

cloudStormy03 copyAt this time I didn’t know if Michell would be returning, and the thought of losing Gale too was almost more than I could handle. I indulged myself to a little pity party about not being able to leave for a couple of days of respite if I lost both of my aides. I felt conflicted because I was determined to see my father through this ordeal, yet I missed my life in Houston and wanted to go home, if only for a day or two.

Because of all of the folderol earlier this week, Dad’s assessment meetings were pushed from the day before Thanksgiving to Monday. Dad was supposed to see Dr. Pfanner again on Monday. Unfortunately, the earliest date available with the gastroenterologist was December 14. I was anxious to get on with Dad’s recovery and hated that we had to wait two more weeks for a follow-up visit with the doctor.

Dad slept until after 4:00 P.M. and didn’t join us for happy hour until almost 6:00 P.M. The five of us had a nice visit, and then Dad read the newspaper in his room while we ate. After dinner we played Oh Hell. Stan won, beating Dad by only a few points. Afterward, Stan and Dad talked about portable screwdrivers, and then Gale started getting him ready for bed.

cloudStormy02While I administered the trach care, Gale prepared Dad’s nighttime meds. When we were finished preparing Dad for bed, Gale left Dad’s room and went to her room to shower. Shortly after she left the room, Dad became nauseated and started vomiting. Fortunately, Mom was nearby and was able to assist me. I quickly moved Dad to the upright position and retrieved our handy plastic basin. After Gale returned, I grabbed the documentation for the Flagyl and saw that one of the side effects of this medication was nausea and vomiting. Awesome. Fortunately, Sue had refilled Dad’s prescription for Zofran, which I immediately crushed and injected into his G-tube. To err on the side of caution, I decided to add Zofran to his daily course of meds until he had finished taking the Flagyl. Vomiting unnerved me because I was so afraid that he might aspirate. To ensure that he was OK, Gale and I sat with him until 10:30 P.M. I’m sure that it wasn’t intentional on his part, but it seemed that Dad never vomited while an aide was with me in the room.

cloudSunNovember 28. I didn’t wake up until 7:30 A.M., which meant that I slept for a decadent period of eight hours. When I ventured downstairs, Mom and Gale were in the kitchen drinking coffee. Gale had been up since 5:30 A.M. and Mom had been up since 6:00 A.M. Surprisingly, Dad was still sleeping. When we heard him stirring shortly before 8:30 A.M., Gale and I administered his morning meds and trach care. As Gale assisted him into his wheelchair, she said that she could tell that he had regained much of his strength, that he seemed a lot stronger. It still took Dad a couple of hours to get up and get ready to face the day, but it was a good day for him.

When he tired of watching me bake, Dad and Stan worked together to assemble a piece of furniture for me. The longer that I lived here, the more my clothes and accessories migrated from Houston. My parents’ vista room, located on the second floor and which I used as a bedroom, had a nice closet but no dresser. Stan and I had found a small set of shelves and coordinating boxes at Lowe’s that would serve my purpose and that would be useful for guests after I eventually moved back home. After this accomplishment, Dad took a nap, while Mom, Stan, and I ate lunch.

2015_nov_005During happy hour, I was able to shoot a group photo of the family and Gale. I don’t recall what prompted the comment, but my mother said that when I was in college, I forced her to have her ears pierced. This comment surprised and concerned me. Anyone who knew my mother would question my ability (or my father’s) to force her to do anything against her will.

 

After dinner, we played cards again and everyone lost at least one hand, except Gale. This might have been the happiest that I had ever seen her as she ended the night the big winner of Oh Hell. Today had been a very good day, and after the events of this week, I felt like we deserved a good day. Maybe we could score two good days in a row and get Dad’s recovery back on track.

cloudSunNovember 29. Although it was Sunday, because of the holiday schedule at the dialysis center, today was a dialysis day for Dad. He seemed practically perky this morning and stood up from the bed by himself. Gale and I were in his room when he stood up, and we exchanged concerned glances. Standing up without having one of us nearby to act as a spotter was dangerous and a problem. However, we were so glad to see that he was getting stronger, we were happy to allow this transgression this one time. He grunted at us when Gale and I gently reminded him that one of us needed to be nearby when he stood up.

img_1328When the wheelchair van picked up Dad at 5:45 A.M., I followed the van to the dialysis center so that I could talk with the charge nurse about his fluid removal. Sue had assured me that they would restrict the amount of fluid that they removed, but because this was a holiday weekend and a Sunday, I wanted to ensure that the well-meaning skeleton staff would follow those orders. I would not have him dehydrated again during dialysis. The charge nurse acknowledged my concerns and said that she would speak to Dad’s nurse.

Dad returned from dialysis while Mom and I were attending church. He and Stan played a couple of hands of cribbage, and Dad won, which was not unusual.

cloudStormy03 copyWhile Stan, Mom, Gale, and I ate lunch, Dad retired to his room for a nap and was still sleeping when Stan left for our home in Houston. Dad woke up shortly before 4:00 P.M., which seemed like a good time for me to change his trach. I was finished and had cleaned up after myself well before happy hour. Although we were thrilled to have Dad swallowing ice chips, he would have preferred something a bit warmer to eat during happy hour.

After dinner, the four of us played Oh Hell, and I was tonight’s winner. We finished playing cards shortly after 7:40 P.M. and by 8:00 P.M. Gale and I had administered his nightly meds and trach care, and he was drifting off to sleep.

cloudSunFour hours later, at midnight, Dad woke up, ready to take on the new day. Gale helped him out of bed and into the wheelchair, but by 12:30 A.M. he was ready to return to bed where he slept peacefully for another six hours.

We had been able to score a couple of good days in a row.