The diagnosis

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.

diagnsisLetter-dWhen 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.

diagnsisLetter-iAfter 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.

diagnsisLetter-aShortly 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.

diagnsisLetter-gAt 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.

diagnsisLetter-nBy 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.

diagnsisLetter-oNovember 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.

diagnsisLetter-sWhile 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.

diagnsisLetter-iShortly 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.

diagnsisLetter-sI 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.

 

Just when I thought we were making some progress

hoyerLift
Hoyer lift and sling

November 10, 2015. Dad had another good night’s sleep. At 4:00 A.M., I took a short break from work and woke Dad and Michell. They progressed through their morning routine without any hitches, but Dad was a bit apprehensive about today’s trip to dialysis. Although today’s transit service to dialysis would be with the wheelchair transit and not the gurney service, he was probably nervous about being moved from the wheelchair with the Hoyer lift. It was supposed to be a safe way to move less ambulatory patients, but it was an unknown entity for us. Before the transit van arrived, we positioned the Hoyer sling under Dad so that the nurse could attach it to the lift when he reached the dialysis center.

When Michell and Dad arrived at the dialysis center, instead of using the Hoyer lift, the EMTs picked up Dad and placed him in the dialysis chair. We had hoped that the nurse at the dialysis center would weigh Dad in the wheelchair so that we could establish a dry weight for him, but the EMTs were too fast. When Dad’s session was finished, Michell encountered a couple of EMTs who had just dropped off a patient. She was able to convince them to transport them home, which enabled Michell and Dad to arrive home at  11:15 A.M., which tied our record time.

Between my working and Dad’s three hours’ worth of naps, I didn’t see him except for trach care until happy hour. He seemed well rested, and by 7:45 P.M., he had beat us at Oh Hell. He headed for bed, and we were finished with our nighttime routine by 8:15 P.M. Our mornings and nights were starting to run like well-oiled machines.

laZbonesNovember 11. Dad had another good night. I might have heard him cough twice. At 7:45 A.M., I was between meetings and wanted to administer trach care and meds, but Dad was still in bed and didn’t want to get up. I told him that he was a lazy bones and that we’d have to make “Lazy Bones” his theme song. He smiled, didn’t open his eyes, but started singing the song.

With the assistance of Michell, he finally got out of bed and got himself shaved and washed up by 8:30 A.M. It was Wednesday—change out day for the aides. Michell was packed up and ready to leave, but she couldn’t go until Gale arrived. Gale was running about an hour late, and she eventually arrived around 11:00 A.M. The ladies exchanged information about Dad, and Michell was on her way.

Mom and Dad met about finances for a while this morning, and then Dad took a short nap before Stephanie, the nurse, arrived. She was also running late, but she finally arrived at 1:00 P.M. Stephanie said that Dad’s vitals were all good and that his lungs sounded clear. She also said that she saw some signs of his bedsore starting to heal. I asked her about the odds of Dad being released from Home Health Care on the 24th. She didn’t think that that would happen, and said that Dad’s home care would most likely be extended an additional 60 days. I wasn’t sure how the process worked, and I had been asking every caregiver for her opinion. The thought that we’d be discharged after our initial 60 day period unnerved me. I was almost out of the lubricant that I used for Dad’s trach. Before Stephanie left, I showed her the package and asked if she could find us some extra packets.

cross9Before Stephanie’s car left the driveway, Brenda pulled up behind her for Dad’s physical therapy session. I didn’t watch the session, but from what I could hear, it seemed like she was working with him on transfers. I once heard her say that Dad got an A on something that he did, but not an A+. At the end of the session, she said that he got a gold star for the day. I had to laugh to myself as I wondered about the type of psychology that they employed to get him to cooperate. On her way out, Brenda stopped by my office and asked me about the rubber mat for the shower that I had agreed to get during our discussion on November 6. I had forgotten to order one, but I promised that I would find one. I also asked her about the chances of us being discharged on the 24th, and she also didn’t think that it was likely. Gale asked her about the exercises that they should concentrate on until she returned on Friday. Whenever the providers left the house, they sat in their cars and updated their notes about their visits with Dad. Before Brenda had pulled out of the driveway, I had ordered Dad’s bath mat from Amazon.

Shortly after Brenda left, Mom and Gale helped Dad use the walker and he walked 48 feet. I logged off from work shortly after 4:30 P.M. and told Dad that I needed to change his trach, and that we’d all be happier if I took care of that chore before happy hour. I grabbed my two TV trays and my assistant, Gale, and we ushered Dad into the bedroom. I probably didn’t need an aide to help me, but I felt better having one of them there with me. Sometimes I forgot to bring something, or I needed an extra hand. For the first time in about six weeks, Dad’s trach was not crusty. The weather had been bad and he’d been forced to stay indoors and away from the dry air.

Dad won at cards again. Before he went to bed, I had Gale administer the meds and the trach care. Gale had said that she would handle Dad’s trach care while I was out of town for a couple of days this week. I was hoping that I could also convince Michell to do the same when I left for a couple of days in December. Gale did a great job, but to ease her mind some, I typed up some notes that detailed every step of the basic routine trach care and the med prep processes. I would be gone for about 48 hours, so she would not need to know how to change his trach.

blogNov10-02November 12. Shortly before 3:30 A.M., I heard Dad call for Gale to help him to find the urinal. I got up shortly after that and woke them. I watched as Gale handled all of the meds and routine trach care this morning—her last practice run before I left for Houston. Everything ran smoothly, and we were ready when the wheelchair van arrived at 5:50 A.M., some 20 minutes early.

While I was working, I heard the audio caller ID on my parents’ landline announce in a distorted voice that we were receiving a call from Watts Prison. For a moment I considered letting the call go to voicemail, but my curiosity got the better of me. I laughed out loud when the caller identified herself as Kristen Watts. So that she didn’t think that I was a nutcase, I quickly explained why I was laughing. After exchanging schedule information, we agreed on Monday and Wednesday sessions at 2:00 P.M. for Dad’s swallow therapy. Her first visit with us would be on Monday, four days from now. I practically ran out of the office to find Mom and share the good news!

I received a call from Gale at 12:20 P.M., stating that she and Dad were on their way home from dialysis. I waited until they got home, and then I left for Houston. The last time that I had been home was on September 22. During that three-day visit, I had come home to pack a few items that I would need during Dad’s final days in hospice.

blogNov10-01Gale had her first solo run with the meds and trach care right after I left. Dad took a nap until 3:00 P.M. and was up for the remainder of the day. The three of them played cards, and Mom won again.  Gale got Dad in bed by 8:00 P.M. and had no problem administering his night time meds and trach care.

That evening, I attended my photography class. The last time that I had seen my classmates, I told them that I had just finished making hospice arrangements for my father. We had had quite a change in fortune since late September. I had been attending class with some of these people for more than five years, and I had known the instructor since 2008. It felt good to be with them again, and they were very excited about Dad’s progress.

November 13. Dad had had another great night, and he slept until Gale woke him at 8:00 A.M. Shortly after Dad was out of bed and dressed, Gale noticed that the line from the nebulizer was dry, which meant that Dad wasn’t receiving any moisture with his oxygen. She called Jared from American HomePatient, and he came over immediately. It seemed that we were supposed to change the water bottle every two weeks. Gale added this missing tidbit of information to our list of chores, but it would have been nice to know this about six weeks earlier. Jared and the other representatives who set up Dad’s home care room probably did tell us everything that we needed to do, but this orientation occurred amid a whirlwind of activity with no written instructions left behind.

blogNov10Stephanie, the nurse, came by around noon to take Dad’s vitals and check his bedsore. She said that the bedsore was healing nicely and that it was looking great. Bless her heart; Stephanie also brought us enough trach lubricant to last for a couple of months. These home care nurses were wonderful. In hindsight, I don’t know if I ever told them how much I appreciated them.

When Brenda stopped by later for Dad’s physical therapy session, she had Dad practice a dry run (literally) getting in and out of the shower with the new mat. She didn’t have him walk today, but she had him run through a series of bed exercises.

My Mom’s dear friend, Marilyn, stopped by around 3:30 P.M. with a nice arrangement of mums and visited with my parents for about an hour. Mom hadn’t resumed her social life, and she benefited by having her friend visit.

Meanwhile, I was in Houston. While I had been in Temple with my parents, my employer had arranged for new office space on our campus. I would be moving from a cubicle to an open-space environment with less room for books and personal belongings. I spent most of the day in my cube, throwing out paper. I filled up three trash cans and three recycle bins, and was still not finished. Stan was thrilled when I brought home three boxes of personal items.

blogNov10-02November 14. Dad seemed to be on a roll. He had another great night’s sleep. He and Gale ran through their morning routine and arrived at the dialysis center shortly before 7:00 A.M. It was a slow day for the EMS transport service, so the wheelchair transport arrived shortly after Gale called them, and then she and Dad arrived home shortly before noon.

Dad was tired and was ready for a nap after Gale administered the midday meds and trach care. After Dad had drifted off to sleep, Gale left the room.

While I was in Houston, I ran several errands, stopped by the office to throw out more paper and prepare my belongings for the move, and got a haircut. I encountered several friends and happily told them about how well Dad was progressing. When I started my return trip to Temple at 2:00 P.M., I was feeling positive about how we were getting along.

blogNov10-01Shortly after I left Houston, Dad woke up from his nap and needed to use the bedside commode. Instead of calling for assistance, he decided that he could get out of bed and into the bathroom without assistance.  Not surprisingly, he fell as soon as he took one step from the bed. Gale heard the commotion through the baby monitor and ran to Dad’s room. She was unable to lift him off of the floor to get him back into the bed. She called for my mother for assistance. It took the two of them almost an hour to get him back into bed so that she could assess any damage caused by the fall. Not only had he been attached to the tube feed, but the oxygen was also attached to his trach collar, which was cupped over the trach tube. While on the floor, he had put a tremendous strain on his G-tube and he was lucky that he didn’t decannulate himself during the fall. After Gale had straightened out the mess caused by the mishap, she helped Dad transfer into the wheelchair.

An hour or so later, Dad wheeled himself into the kitchen and asked Mom not to tell me about his fall. She said that she wouldn’t tell me about the incident, as long as he promised not to try to get out of bed again without assistance.

When I arrived at my parents’ home shortly before 5:00 P.M., I was greeted by what seemed like a happy household. We had a nice happy hour, and after dinner, we played two games of Oh Hell. Gale was excited to win the first game, and Mom won the second game.

blogNov10-02When we finished playing cards, Gale told me that she wanted to take a shower. She said that I might want to read her log book to catch up on the activities that occurred while I was gone. I read her notes about today’s fiasco and was horrified, appalled, and furious. Such a stunt could have seriously hurt him. I spoke with Gale before I went to bed, and she was very upset. She said that she had never experienced such an incident before and was not sure that she wanted to return, which would be a tremendous loss for all of us. Not only would we lose a wonderful caregiver, but we also were very fond of her.

Fuming, I went upstairs and called Stan. The poor guy got an earful as I unloaded my frustrations of Dad’s day. He talked me down and told me to approach Dad and his resistance to following instructions in terms of my fears. He wasn’t kidding. Dad was his own worst enemy, and like Gale, I was afraid to let him out of my sight.

 

Finally: some progress and encouraging news

November 2, 2015. I had been working for over an hour when Dad woke up at 5:00 A.M. after a restless night. He was ready to get out of bed, so Gale got up, disconnected his oxygen and tube feed, and helped him transfer from the bed to the wheelchair. Just four weeks earlier, this transfer required the brawn of both Gale and me. Now, Dad needed just a minor assist from one of us. Because he was now able to reposition himself in the bed, we no longer had to use the draw sheet to move him in the bed.

By 6:00 A.M. he was dressed and ready for his morning meds and trach care. His burst of energy was short-lived, however. By 7:30 A.M. he was ready for a nap, but 90 minutes later he was awake and ready to face the day again.

blogNov01-6Later in the morning, I received a call from Barbara at the Scott & White gastroenterology center. She said that her office had received a referral from Dr. Issac. She wanted to schedule an appointment for Dad to have his G-tube changed and to discuss bulous feeds, which would enable us to administer larger quantities of Nepro three to four times each day and discontinue the continuous feed. Because of Dad’s dialysis schedule, I couldn’t schedule an appointment any earlier than November 30.

A short time later, I received a text message from Sue, our friend and the nurse practitioner at the dialysis center. After conferring with Dr. Issac about the missing Fluconazole (antifungal), she said that the doctor wanted Dad to take the pills for another two weeks. She wrote a new prescription for two weeks’ worth of pills, which still cost the better part of $200, but about half the cost of the prescription that we had declined on Saturday at the pharmacy.

The nurse arrived shortly before 1:00 P.M. to take Dad’s vitals and check his progress. She thought that he was progressing well, and was gone within 10 minutes.

While I was working, Mom took a phone call from Scott & White EMS. They asked if we still needed the EMS transport service to dialysis. Evidently, we’re supposed to call them at the start of each month to schedule pickups for the upcoming month. I hoped that the next call that we made to the dispatch office was to cancel the service. At $120 per week, this service was starting to get a bit pricey.

blogNov01-5Shortly before I was ready to log off for the day, Dad wanted to make his way into the office, which was no easy task. Although the door was wide enough for the wheelchair, the placement of a large desk just inside the door made wheelchair access impossible. Gale and I had to carefully transfer him from the stable wheelchair to the less stable 1980s era four-star desk chair. I was glad that the physical therapist wasn’t here to watch.

A couple of days earlier, Dad had lifted his legs off of the bed during a wheelchair transfer and Laura had been having him exercise in front of the bathroom vanity. Dad said that he wanted to try walking with the walker. After happy hour, Mom followed Dad with the wheelchair and Gale retrieved Dad’s walker and helped him walk 14 steps down the hallway, which was a huge accomplishment. I’m not sure that we should have been having Dad walk without the supervision of his physical therapist, but we were very excited. Only two weeks earlier, standing and moving with the walker would have been impossible.

After dinner, we were ready for a cutthroat game of Oh Hell! By 8:15 P.M., Mom was the big winner, and it was time for us to begin our nighttime routine.

My nighttime calls to Stan were much more enjoyable after a day like today. We were starting to get more support from healthcare providers and Dad’s strength was starting to return. Our baby steps seemed to be moving in the right direction.

November 3. Yesterday’s good day continued on into the night. Dad slept well and didn’t wake up until I woke him at 4:00 A.M. He and Gale marched through their morning routine and were picked up by the EMS at 6:00 A.M. Dad’s scheduled pickup time was 6:20 A.M., but you never knew when they would arrive. Dad didn’t like to be late for anything, so he was usually ready by 5:45 A.M.

blogNov01-3I had assumed that Michell would replace Gale tomorrow, but I hadn’t heard anything from Becky, the owner of One on One Personal Home Care. I dashed off a quick email to her to confirm, and then returned to my day job.

Because Dad had been picked up a bit early this morning, he had gotten started early on his dialysis session, and he was able to leave dialysis early. He and Gale didn’t need to wait very long for the EMS ride for the return trip, and they were home by noon. After I administered his meds and trach care, Dad was ready for a little nap.

About a week earlier, on October 26, Barbara, a neighbor and doctor with Scott & White, told us that she would try to help get Dad an earlier appointment with a pulmonologist so that he could get started on his swallow therapy. Today, I asked Mom if she had heard from Barbara. She said that she had, and Barbara had said that after the pulmonologist had checked Dad’s medical records, he declined to see Dad, saying that Dad was a chronic aspirator and that treating him would be pointless. This discouraging news was practically impossible to process. I couldn’t bear the prospect of Dad never being able to eat again. Mom and I tacitly agreed to not share this depressing news with Dad.

When he woke up about three hours later, Gale interrupted me at work to tell me that Dad seemed very disoriented. He was in the bathroom washing his hands, but he didn’t seem to know where he was. We assumed that he was exhausted from dialysis and that he would snap out of it. He didn’t come out of his room to visit with us during happy hour, but he seemed to perk up when asked if he wanted to play cards after dinner.

blogNov01-2Dad was still very tired and was ready for bed shortly after Mom was declared the Oh Hell winner of the night. By 7:30 P.M., he was in bed and ready for me to administer his meds and trach care. I sat with him while Gale prepared herself for bed, and then went upstairs to call Stan. To say the least, my updates to him about the daily events were varied from day to day. Because Dad went to bed early, I was also able to retire early and hoped to get an extra 30 minutes of sleep.

November 4. I had been working for about 30 minutes when Dad woke up shortly after 4:15 A.M. He wanted to get out of bed, and he had Gale disconnect him and help him transfer to his wheelchair. He wheeled himself into the bathroom and proceeded to fall asleep. Gale helped him back into the bed and I suctioned him. He had been coughing a lot and had a super wet cough, so I thought that he’d have a lot of secretions to suction, but the trach tube was dry. I surmised that the cough had more to do with his lungs than his trach. After sleeping for about three more hours, he was awake and raring to get out of bed at 7:00 A.M. I took a break from work about an hour later and administered his morning meds. By 8:30 A.M., he was dressed and alert and leaving the bedroom at full speed in his wheelchair.

Around 9:45 A.M., the three of us got with him to walk again: one of us on each side and one behind him with the wheelchair. His gait was a bit unsteady, but he took about 17 steps, which was equivalent to almost 19 feet, a distance that we based on the size of our floor tiles.

blogNov01-7Michell arrived at 11:00 A.M. and conferred with Gale for a few minutes. It was nice to have a few weeks in a row with the same two aides. The transitions were easier for them and they were getting to know one another. Shortly after Gale left, Dad wanted to lie down for a short nap.

When Dad woke up, he wanted to work on his computer. I had commandeered his computer desk and had disconnected his computer so that I could use the keyboard and mouse, so he had to use Mom’s computer. With him and Mom in the office, it seemed like the perfect time for me to get out of the room and take a lunch break.

Shortly after 1:00 P.M., Laura arrived for Dad’s physical therapy session. She had Dad walk the same path that we had had him walk earlier, but he walked it at least twice during their session. She then moved him into the bathroom and had him do some exercises while holding onto the vanity. Dad was pretty exhausted when Laura left and was ready for another nap.

Just as I was logging off for the day, I received a text message from Adan, the manager of rehab services at S&W Homecare. I had texted him earlier in the day and asked if we could talk sometime today after 3:00 P.M. When I called him, he said that he would contact our PCP (probably Tony Issac or Sue, Dr. Issac’s nurse practitioner) to have a swallow study ordered for Dad. He also said that he’d have Kristin, a speech pathologist, contact me sometime tomorrow to schedule an appointment with Dad. Adan and I agreed that we wanted her to have some swallow therapy sessions with Dad before the modified barium swallow study (MBSS) to ensure that he would be able to handle the barium. He also said that he would contact the Pulmonary desk at S&W to see if he could find out which doctor would be assigned to Dad.

I was stoked. Adan was one of a handful of people who was in our corner. Without him and the nephrology team at the dialysis center, I don’t know what we would have done. I was thankful that Mom had met and had come to know Adan while Dad was at the CCH. I couldn’t wait to share this good news with Mom and Dad.

We played Oh Hell again, and Dad won (beating Mom by just a few points). We were in bed early and I called Stan at 8:30 P.M. to share the news of the day. It was a nice quiet night until about 12:30 A.M. After hearing Dad cough for about 15 minutes, I got out of bed and went downstairs to suction his trach.

November 5. Sometimes I found it difficult to sleep with all of the noise that emanated from the baby monitor. This was one of those nights—or mornings. I finally got back to sleep about an hour before my iPhone played its annoying wake-up ring tone. I made my way back downstairs, started the coffee maker, and logged on to work.

blogNov01-4Dad and Michell were sound asleep when I woke them shortly after 4:00 A.M. We had an uneventful morning and Dad was picked up for dialysis shortly before 6:00 A.M. His dialysis session was finished before 11:00 A.M., and they were home before noon. After administering his midday meds and trach care, he was ready for a nap.

He woke up from his nap a bit disoriented again, but he became more alert as the day progressed. I knew that he was completely alert when he complained after learning how much we were spending on his in-home care. It wasn’t a topic that I wanted to have discussed too much within earshot of Michell. A cost of $1,000 per week might have seemed high, but it was a bargain for 24/7 care.

Other than the discussion about medical bills, Dad was in fairly good spirits for the remainder of the day. We were experiencing another beautiful autumn day today, and Dad wanted us all to sit on the patio during happy hour. Michell was starting her second week with us and was beginning to feel more comfortable with us, and she started talking about her personal life. I have friends who spell their names as Michelle and Michele. I asked her about the spelling of her name and whether hers was a family name. She laughed and said that her mother didn’t know how to Michelle and consequently, her name looked like “mic-hell.”

blogNov01-6After dinner, Dad felt well enough to play a couple of games of Oh Hell: Dad won the first game and Mom won the second. We had two sets of criteria that determined how long we played cards: how Dad felt and whether he had dialysis the next day and how I felt and whether I had to work the next day. For the most part, I wanted to start Dad’s nighttime routine by 8:30 P.M. so that I could go to sleep by 9:30 P.M. A perfect night was one in which we all got six hours of uninterrupted sleep.

A perfect night was one in which we all got six hours of uninterrupted sleep.

 

Caring for the man who would not sleep

October 2. It was 2:00 A.M., and Dad was wide awake and wanted to get up. After Gale, our caregiver, called me for assistance, she resituated Dad in bed and helped him roll over on his side, although she noticed he didn’t need her assistance. To keep him on his side and more or less stuck in bed, she wedged a pillow behind him. I don’t know if he slept, but at 4:00 A.M., Gale paged me again when Dad tried to get out of bed, so the pillow didn’t do much to control him.

My parents’ bathroom was large, but the commode was located in a separate room, which was more like a closet. In his current condition, it was physically impossible for him to use the commode. American HomePatient (AHP) provided us with a bedside bedsideCommodecommode that we kept in the common area of the bathroom. Having it in a more open area enabled the aides to transport him to and from the commode, a contraption that he loathed. After helping him into the bathroom to use the dreaded bedside commode, Gale and I were able to convince him to go back to bed. Thankfully, he remained in bed until 8:30 A.M., at which time I administered his trach care and morning meds. I was still a rookie with the trach care and the process took about 45 minutes.

I received a call from Kathleen Devine (I loved her name.), who introduced herself as the home care physical therapist. She wanted to stop by to assess Dad’s strength to determine a plan for his occupational and physical therapies. Our schedule was wide open and she said that she would stop by before noon.

After a couple of trips to dialysis, we had realized that in addition to his extra trach, Dad gymBagalso needed to bring a blanket, a box of tissues, and various other items. Gale told Stan that instead of Mom’s Elizabeth Arden tote bag that we were using to transport his dialysis accessories, Dad needed something larger and more masculine, like a duffle bag. Stan wasn’t sure what she had in mind, but he eventually found a gym bag that she deemed perfect for the task.

Gale checked out Dad’s bureau and closet. She marveled at how well his clothes were folded and organized, although I don’t know if the credit goes to Dad or Mom. With a little guidance from Dad, Gale picked out some clothes for him and dressed him for the day. Gale also made a slight design adjustment to Dad’s undershirt. Because his PEG tube extended out from his midsection, wearing an undershirt over the tube bent the tube, which, in addition to being uncomfortable, was not good for the PEG tube. With Dad’s permission and the precision of Edward Scissorhands, Gale cut a hole in his undershirt and fished the tube through the opening. When Dad wore a button-down shirt, the tube extended through the placket. The PEG tube wardrobe problem was solved.

By 9:30 A.M., Gale and I had transferred Dad to the wheelchair and Gale wheeled him outside on the porch. Dad could navigate the wheelchair pretty well by himself in the house, but he needed some assistance going through the thresholds to the outside. By 10:00 A.M., I insisted that he come back inside so that we could hook him up to the moist air. He wasn’t enamored with the thought of being tethered to the concentrator and nebulizer, but after Mom brought him the paper he seemed pretty satisfied to sit in his room to read it. He hadn’t read a newspaper since July.

At 11:45 A.M., Kathleen arrived. She was a no-nonsense transplant from New York and I liked her immediately. She watched as Gale and I transferred Dad from the wheelchair to the bed and back again. She told us that a physical therapist aide would stop by twice a week to help him stand and walk, and the occupational therapist would visit him once a week and work on his upper body and core strength. We agreed that Dad would have physical therapy on Monday and Wednesday and occupational therapy on Friday. When I asked about speech therapy to address his swallowing problems, she said that I would have to speak with Adan about swallow therapy.

A few minutes after Kathleen left, the doorbell rang again, and this time it was Paula, the home care nurse. According to the plan that we had established during Dad’s admission to home care, the home care nurse would visit us three times a week. Although I was glad to have the nurses stop by, I was also nervous that they would find fault with something that we were or were not doing. Paula told us that Dad’s bed sore, which started when he fell in May, was serious, and she suggested that we get some Mepilex border patches. She had a couple of extras in her bag but told us that they were expensive and that we should ask AHP to supply them for us.

When Paula left, I called AHP but was told that without a doctor’s order, Medicare would not reimburse them. To obtain doctor’s orders would require that I contact Dad’s primary care physician and schedule an appointment, and this activity was not high on my list of priorities, so I decided to buy a package myself. Also, when Gale and I snagged supplies from Dad’s room at the CCH, I grabbed a box of gloves, size small, which were fine for me but were too small for Gale. I logged on to Amazon.com and ordered the Mepilex patches and a case of medium gloves. Was there anything that this company didn’t sell?

After his busy day of visitors, and a tremendous lack of sleep, Dad finally let us put him back in bed and he slept for two glorious hours.

Shortly before 5:00 P.M., Dad wanted to get out of bed and visit with us while we partook of some alcoholic beverages. Happy hour at the Locke house had been a nightly ritual that he could now only watch. Before the surgery last May, my Dad’s Manhattans had been a highlight of the overnight visit to my parents’ house that my girlfriends looked forward to every year.

At 7:30 P.M., we began what was becoming our nightly ritual. I administered the trach care and the meds, and Gale changed out the tube feed bag and filled the new one with Nepro. Gale was quickly becoming a pro at winding the tubing through the Kangaroo pump, and I knew that I needed to start paying more attention to what she was doing. It was unfortunate that the bag did not hold enough Nepro to make it through the night. Fortunately, I guess, Dad didn’t sleep through the night anyway.

October 3. At 2:20 A.M., Gale woke to find that Dad was halfway out of the bed, which prompted her to use the baby monitor to page me. Gale and I maneuvered him back into bed, but he insisted that he was going to get up. I told him that if he didn’t stay in bed, I would get into the bed next to him so that he couldn’t escape. He said, “OK,” and scooted over. Two hours later, we were up and I had a dandy kink in my neck from sleeping halfway off of the pillow. Gale and I transferred Dad to the wheelchair and he wheeled himself to the sink in the bathroom, where he washed his face and brushed his teeth. As he held his hands and washcloth under the faucet, he said that this was the first time in five months that he had felt running water on his hands. Gale and I exchanged glances, too overcome to say anything in response. He neglected to mention that it had also been five months since he had brushed his teeth and washed his face. These milestones helped to put Dad in a great mood.

I administered his morning meds and trach care and Gale dressed him for dialysis. He was ready for the ambulance transport at 6:10 A.M., 10 minutes before his scheduled pickup time. Dad’s great mood diminished somewhat when the transport arrived at 7:20 A.M., 20 minutes after his session was supposed to start.  He was eventually hooked up at 8:00 A.M.

trachBib2During dialysis, Dad used oxygen tanks from the dialysis center, but this service did not include the moisture that he needed to keep his trach moist. In an attempt to compensate for the lack of moisture, Timothy from American HomePatient had provided us with several bibs composed of a porous non-woven material. The bib was placed between the trach and the oxygen source. The bib wouldn’t stay moist for more than 30 minutes, so we kept a small spray bottle in his dialysis bag, and Gale was vigilant about keeping the bib wet.

Dad stayed alert during the entire dialysis session, and he and Gale talked the entire time. I imagine that Gale would have appreciated his taking a little nap so that she could close her eyes. Dad’s blood pressure had dropped somewhat during dialysis, so the dialysis nurse stopped the session before the goal of 1500 ml was reached. Gale called the EMT service for a ride, and once again they waited for more than an hour for a ride home. We were starting to set some pretty low expectations for the EMT transport service.

After they returned home, Dad was tired and wanted to take a nap. During the two hours that he slept, Gale also slept. At 4:00 P.M., Dad was awake and ready to get up. Gale and I transferred him to his wheelchair and we went outside and sat on the patio for 90 minutes. He had been away from the nebulizer for almost six hours today, so I strongly suggested that he go back to his room. My husband, Stan, was still in town, and he visited with Dad until 7:00 P.M., when Mom served dinner. In addition to the baby monitor station in my bedroom, we also kept one of the stations in the dining room. Just a few minutes into dinner, we heard an unusual sound from the monitor. Gale practically leapt from her chair and ran to the bedroom and found my father on the floor on the right side of his bed. In addition to the oxygen, he was also receiving nutrition from the tube feed. All of this equipment was located on the left side of the bed, which meant that he was putting a strain on a couple of vital supplies by being on the floor. It astonished me that he couldn’t figure out that in addition to being too weak to stand, he was also tethered. Fortunately, Stan was there and he, Gale, and I got Dad up off the floor and into the wheelchair. Gale checked his PEG and looked for skin tears and I checked his trach. He hadn’t hurt himself, but he gave the rest of us a scare.

Gale stayed with Dad while Mom, Stan, and I finished dinner. I then sat with him while Gale ate. When she was finished, Gale started getting Dad ready for bed. After he was dressed for bed, Gale and I ran through our nightly routine of meds, trach care, and tube feed.

Starting at 10:00 P.M., he started trying to get out of bed. He might have been too weak to stand, but Gale thought that for a weak guy, he was pretty strong. He could really put up a battle when he wanted to get out of bed.

October 4. The baby monitor alarm woke me at 4:00 A.M. Gale thought that Dad sounded gurgly and thought that he might need to be suctioned. I agreed and after I finished suctioning him, he insisted that he wanted to use the house toilet. Gale and I tried to explain that he couldn’t use it but that we would take him to the bedside commode in the bathroom. To say the least, he became very upset. He complained that the commode seat was very uncomfortable, which was true. He finally relented, but then he didn’t want to go back to bed, so Gale got him up and prepared for the day. I promised Dad that I would order a seat cushion for him, which I did later in the day.

By 6:00 A.M., he was sitting in the wheelchair, attached to the moist oxygen, and reading the paper, and we were all happy.

After breakfast, I returned to Dad’s room and administered his morning meds and trach care and then excused myself to shower and get ready for church. At 10:20 A.M., my mother and I escaped to church. Our friends at church were anxious to hear about Dad. Sue, our friend who was the nurse practitioner at the dialysis center, said that Dad was a real chatterbox. She had been amazed by how much he talked during dialysis. The pastors and everyone else we told about Dad were thrilled that he was at home.

Shortly before we returned home from church around 12:30 P.M., Dad felt a little tired and wanted to go back to bed to rest. Gale mentioned to me that she had heard some noise coming from his stomach and told me that she was going to ask the nurse to listen more closely tomorrow.

My husband had been staying with us for the past week, but after lunch, he went back home to Houston. I don’t know how we would have managed without him and I hoped that we wouldn’t need his brawn while he was gone. For both of us, our vacation had now come to an end. I had set up my work computer in my parents’ office and planned to start back to work tomorrow at 4:30 A.M.

Tonight was another frustrating night of Dad trying to get out of bed. We had him ready for bed at 8:30 P.M., but he slept until 11:00 P.M., after which time he tried repeatedly to get out of bed. At 2:00 A.M., Gale used the baby monitor alarm to call me. Dad had scooted to the end of the bed and she needed help to raise him. He insisted that he wanted to get up. I explained to him that I had to go back to work in a couple of hours and that I wanted him to sleep until 4:00 A.M., which was when I would get up. He agreed to that plan, and the three of us slept for two more hours. I fantasized about six consecutive hours of sleep.

It’s pointless; he’ll never learn how to swallow

September 1, 2015. Dad was awake at 3:40 A.M. and was convinced that there were animals in his room. Regardless of what Michelle, his nurse, said, he insisted that they were there and he wanted her to move his bed so that he could get a better view of them. Michelle tried her best to reorient him to his surroundings by asking him some questions, but he would answer only a few of them. After he became somewhat oriented, she gave Dad his call light and left his room. A few additional hours of sleep didn’t seem to help Dad, as he still seemed somewhat confused when he woke up later.

When Jennifer arrived for Dad’s physical therapy session, Dad said that he wasn’t feeling very well, but would try to participate. She got him to do some bed exercises and eventually got him to sit on the edge of the bed. From that point on, he refused to participate and said that he wanted to lie down. She was able to assist him into the Stryker cardiac chair and then left him with Mom. Mom took him outside, and he was amazed by it; he had not been outside in almost four months, and he thoroughly enjoyed the different sensory experience.

I was in Houston, but right about that time, I received a text message from Pastor Don, who asked for Mom’s mobile phone number. He must have been near the CCH because he texted me right back that Mom and Dad were outside the building but were heading indoors. Mom had never seen Don’s car before and didn’t realize that he was in the parking lot.

After my parents returned to Dad’s room, Dad wanted to know if he and Mom were going shopping. Given his current circumstances, it was an odd question but was typical of a question he might have asked some five months earlier. While three nurses moved Dad from the Stryker chair back into bed, Pastor Don came inside and the three of them had a nice visit. There was something about visits from male friends that seemed to make Dad more lucid and engaged. We had had a similar experience when our neighbor, Tom, visited.

Dad had been receiving fentanyl for his shoulder pain, and he was sleeping when Mom returned from lunch. Mom had been told that they were reducing his dosage, but he sure seemed sleepy. After he woke up, he and Mom had a nice afternoon. She told him about the rehab facility that she and I had visited and she also told him about rehab therapy that he could receive at home.

September 2. Shortly after midnight, Dad was wide awake and very confused. Konnie, his nurse, tried to reorient him, but Dad could not recall his birth date, the time, the date, or the president. Konnie spent quite a while reorienting Dad, and then Dad slept until he was awakened shortly before 7:00 A.M. for dialysis. However, according to Suzanne, the dialysis nurse, Dad was still pretty disoriented when he arrived for his session.

When Mom arrived, Dad immediately started talking about going home, and he kept on topic for the entire day. He just could not understand why he couldn’t leave and eventually got mad at Mom for not taking him out of this place. The nurses tried to help by giving him some medication to calm his agitation.

dad08-2015Addison, one of the speech pathologists that we knew from Memorial, arrived to administer another bedside swallow study. The last one, which was administered by Holly, was a total bust. Dr. White had ordered this evaluation at my request a couple of days ago. Unfortunately, Dad responded about as well to Addison as he had to Holly a few days earlier on August 31. He refused to participate and Mom had to read him the riot act to get him to work with Addison. His swallows were delayed for a few seconds and he coughed each time he swallowed. When Addison instructed him to use his Yankauer to suction himself, he flatly refused. She tried to explain the consequences to him, but the effort was wasted breath on her part. A few minutes after Addison completed the evaluation, the respiratory therapist suctioned out the brown and purple fluid that he had aspirated during the test. Because of another failed bedside evaluation, Addison could not recommend him for the modified barium swallow study (MBSS), which would further assess his readiness to have his trach red-capped. Dad’s delirium seemed to be getting worse, and I couldn’t help but wonder what they had given Dad earlier in the day to calm him.

Shortly after 3:30 P.M., Susan stopped by for Dad’s physical therapy session. Dad had been asking all day to get out of bed. That he kept trying to get out of bed to walk to the bathroom was ironic, because he could not stand without some assistance, let alone walk. When Susan finished his session with him, she moved him to the Stryker chair with the air mattress. She admitted that Dad was making progress, albeit, very slowly.

Mom had been a little disappointed about the day. Dad had made little or no progress toward the goals laid out for him by the doctor, and Dad’s time with hospitalization coverage was quickly slipping away.

September 3. If only Dad could sleep through the night. Once again, he was awake in the middle of the night, and he set off the bed alarm when he attempted to get out of bed. He told the nurse that he needed to get out of bed so that he could go to his office and work on his finances. Konnie, the nurse, tried to reorient Dad to the fact that he was at the CCH and not at home. Dad became verbally aggressive with him and started hitting and kicking Konnie and the nurses who came to the room to assist him. Konnie finally administered Haldol, although Dad still remained pretty combative for a while afterward. His lungs were full of secretions and he needed to be suctioned, but Dad refused to let the respiratory therapist suction him. Finally, the nurse contacted the doctor, who ordered the nurses to restrain him.

When Dr. Anderson arrived later than morning, he decided to address Dad’s delirium by doubling Dad’s bedtime dosage of Seroquel. I had to assume that the increased dosage would decrease his need for restraints. The doctor had ordered that they remain in place because Dad was pulling at his devices earlier in the morning.

Dad had a much better physical therapy session today with Susan. In addition to executing the exercises, she had him use the walker to navigate from the bed to the chair. When she had finished her session with him, she left him in the Stryker chair. After Dad was situated in the chair, Esther put on his restraints.

Mom arrived as Dad was getting into the chair at the end of his physical therapy session with Susan. After the past few days, during which Dad was too weak to complete some of his exercises, Mom was thrilled to see his progress this morning.

Mom approached Dr. Anderson about letting Dad have some ice. Dad had been allowed to have some ice chips a few times each day when he was at Memorial. Holly and Addison, the speech therapists at Memorial, had told us that even if he aspirated a little of the water from the ice, it would be absorbed by his lungs. Mom thought that if he had some ice chips a few times each day, he would get some practice swallowing. The doctor said that there wasn’t any point in letting Dad have any ice because he would never learn how to swallow. Dr. Anderson added that it was “pointless [to give him ice] because Dad had aspirated so many times” since he left Memorial. Before he left the room, Mom told the doctor that she was going to check out the local dialysis center. In his typical encouraging manner, Dr. Anderson said that she’d “have to go a long way to find a dialysis center that would accept him.”

Mom had made an appointment with the director of the Scott & White dialysis center. Mom later told me that the meeting went well and that she left the meeting with the impression that the trach would not prevent Dad from receiving dialysis there.

Shortly after Mom left for her appointment with the director of the dialysis center, Dad asked Esther, his nurse, why he was restrained. She reminded him about his aggressive behavior during the night. When Dad asked to have the restraints removed, Esther told him about the requirements for removing them. He said that he understood and indicated that he would be more cooperative.

A few minutes after his restraints were removed, Dr. Sangeetha Ranganath, the infectious diseases specialist, stopped by for another assessment. Dr. Ranganath was a sweet Indian woman, but she spoke rapidly with a soft voice and an accent that Mom couldn’t understand. Mom later learned that Dr. Ranganath said that they were keeping him on the same antibiotic for another few weeks.

Dad spent about six hours in the chair and Mom felt like he had had a pretty good day and had made some progress. For her, the day was a mixture of potentially good and discouraging news. Her encounter with Dr. Anderson further hardened her negative feelings toward this doctor. However, she had come away from her meeting with the director of the dialysis center with the impression that they would be able to accommodate Dad.

Konnie was Dad’s night nurse again, and once again, he had difficulty getting Dad to understand that he had to remain in bed. Konnie was only partially successful in reorienting Dad to his situation and had to apply the restraints. He checked on Dad a few times during the night and it seemed like Dad stayed asleep.

September 4. For Dad, one day sort of morphed into the next. For him, today was dialysis day, but for the rest of us, it was the start of the Labor Day weekend. When Dad was wheeled into the dialysis center, he was still wearing his bed restraints. Dad kept attempting to get out of his bed, and Leon, the dialysis nurse, thought that Dad was very confused and disoriented.

While Dad was in dialysis, Mom met with Adan, formerly a speech pathologist at the CCH. She and I had been told by several physicians that Dad should have his feeding tube replaced with the PEG. Unfortunately, we had come to the point where we really didn’t trust some of the attending physicians. She trusted Adan and felt like she could go to him for advice. At the conclusion of their meeting, Mom was ready to tell Dr. Anderson that we wanted to proceed with the PEG procedure.

When she eventually saw the doctor, she told him of her decision. He said that he would order the procedure, but Dad might not get the PEG until Tuesday, the day after Labor Day.

One of Mom’s good friends, Sally, had admitted herself into a SNiF after hip surgery. Mom called her to get a first-hand account of her experience and what we might expect with Dad. With the exception of the food, she said that her experience was positive. She also mentioned that SNiF residents could get a pass to go home on the weekend. This was a benefit that we hadn’t considered.

During the afternoon, Jennifer stopped by for Dad’s physical therapy session. He was very uncooperative and was fixated on scissors and a hair appointment that he supposedly was late for. Jennifer was able to get him to perform only a few range-of-motion exercises during their session.

After work, Stan and I drove to Temple for the long weekend. After dinner, Mom, Stan, and I visited Dad at the CCH. We had the nurse move Dad into the Stryker chair, and then we wheeled him outside and visited with him for about 45 minutes. At 7:45 P.M., we returned Dad to his room, and the three of us returned to the house.

After we left, Dad was moved back into the bed, where the nurse reapplied his restraints.

rescuedslipperWhen the three of us arrived at the house, Mom told us that last night she had washed her slippers and had left them on the bench in the courtyard.When she woke up today, only one slipper remained. The neighbors share stories of the wildlife in the area. I decided to try my luck slipper hunting in the backyard. Sure enough, I found it under a tree, none the worse for wear. Something that seemed like a tasty treat must have left its predator with a little dry mouth. Dad would love this story.

 

And the nightmare begins again

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Just. Want. To. Go. Home.

redCap2
Red caps rock!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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