Derailed on the road to recovery

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

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

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

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

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

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

blogNov10Shortly after Sally and Ray left, I administered another Imodium pill into Dad’s feeding tube. Although he was feeling a bit better, he still was not better.

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

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

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

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

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

blogaug1-leftWhen Dad and Michell arrived home at 11:15 A.M., Dad was wiped out and was not feeling well. Within a few minutes after getting back on the bed, he was nauseous, and his trach collar was loose again. I tightened the collar, but he still didn’t feel well. I was becoming very concerned about him and called the Home Care nurse. Stephanie was working today and arrived shortly before 1:00 P.M. in response to our call. After checking Dad, she said that heard congestion in his lungs that she had not heard before. Also, his oxygen saturation never exceeded 93% while she was there. My concern for Dad escalated when Stephanie advised me to call 911.

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

blogaug1-rightAlthough Dad’s condition wasn’t any better, I was somewhat relieved by the EMTs’ assessment, and that we were able to avoid the emergency room. Dad was scheduled to see the gastroenterologist tomorrow, so I just needed to get him through the night. I called Sue, and she refilled Dad’s prescription of ondansetron (Zofran). Mom drove to the pharmacy as soon as I got off the phone with Sue. By the time that she returned home with the prescription, Dad was in a deep sleep. I eventually administered the Zofran in his feeding tube shortly before 5:00 P.M.

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

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

blogaug1-leftWe were ready when the van arrived five minutes early. The van transported Dad and Michell to the clinic, and Mom and I followed in the car. The clinic was located less than five miles from my parents’ home and after locating the doctor’s office and paying the co-pay, we were seated in the waiting room a good 20 minutes earlier than the 9:20 A.M. appointment. When they weighed my 6’1” father, his weight was 134.3 lb, which was less than it had been when he left dialysis yesterday. We waited almost an hour in the waiting room before we were escorted to an examination room. Exam rooms aren’t very large, and they can seem downright tiny the patient is in a wheelchair and is accompanied by a three-person entourage.

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

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

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

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

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

blogaug1-upStan left work early and drove from Houston to my parents’ home. He arrived shortly after 5:00 P.M. and just in time for happy hour. Shortly after 6:00 P.M., Dad went to his room and read the paper while we had dinner. After dinner, we played Oh Hell and hit the hay pretty early.

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

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.

 

At last! Ambulatory enough for an office visit with a doctor

November 6, 2015. We had a good night. I didn’t hear Dad cough once, and I was able to sleep uninterrupted for five hours. I was slow in getting up, though, and didn’t start to work until 4:15 A.M. Dad and Michell were also slow to rise, not getting up until after 6:00 A.M.

cross7We received a steady stream of visitors today, starting with Janet, Dad’s occupational therapist. She and Dad had another good workout today, and I could hear them chatting nonstop during their session. Before she left, Janet said that because Dad was progressing so well toward his goals, she would set new goals for him and extend his treatment for another month.

After Janet had left, Dad took a short nap so that he would be well rested when Brenda arrived for his physical therapy session. Brenda wanted to start working with Dad on transfers to the shower. The bathroom could be a dangerous place, and she had recommended that we install grab bars in the shower, a suggestion that was not well received. Shortly after she arrived, Brenda encouraged us to consider adding permanent grab bars in the showers. I asked if we could use the suction-cup bars, and she was adamant that this was not just a bad idea, but an unsafe one, too. With Dad’s trach, I told her, anything producing sheetrock or tile dust was off the table. After a few minutes of discussion, she suggested an alternate plan that would require only an anti-slip bath mat, which was a more palatable solution for Dad. I told her that I would obtain one as soon as possible.

walkerSince Brenda’s last visit with us, the monstrosity known as the Hoyer lift had been delivered and was in our garage. Brenda showed us how to place the Hoyer lift sling in the wheelchair so that it could be used when Dad arrived at the dialysis clinic. She also had Dad use the walker. He first walked 28 feet and then she had him walk an additional 48 feet. Shortly after she left, Stephanie, the nurse, arrived to check his vitals and his bed sore. Dad was pretty tired after all the exercise and he napped away the afternoon while I worked.

After dinner we played Oh Hell, and I won for a change. As we were moving toward the bedroom, I realized that I had forgotten that I was supposed to change Dad’s trach today. I didn’t like changing it on dialysis days and I didn’t want to wait until Sunday, so I set up my TV trays and performed that most-dreaded chore at bedtime. Dad was still confused about what I was doing to him during the trach change and would become a little apprehensive as I prepared for the procedure. It could have been that he was apprehensive because he sensed my nervousness. Ironically, he would often fall asleep before I was finished.

Fortunately, we had ended our game-playing early. I was finished with tonight’s respiratory therapy activities shortly after 8:00 P.M. and was in bed by 8:30 P.M. Back in Houston, Stan was at a poker game, so we had to forgo our nightly phone call and be satisfied with texting each other good night.

cross9November 7. Although it was Saturday, we still had to prepare Dad for dialysis. I didn’t have to get up quite as early as for work, so I slept until 4:00 A.M., which was when I needed to wake Dad and Michell. It had been raining earlier this morning and we had already received a couple of inches of rain. To ensure that we could get Dad transported to the ambulance without him getting wet, I moved one of the cars out of the garage so that the ambulance could back in. The EMS dispatcher called us at 6:00 A.M. and told us that they were running late and would arrive around 6:20 A.M. At 6:22 A.M., we heard a knock on the door to the garage, and we opened it to find two EMTs. As we did every dialysis morning, we watched for the ambulance and we couldn’t understand how we had missed their arrival. We didn’t even hear them back into the garage. We had two personable female EMTs again today and they enthusiastically helped Dad onto the gurney.

Stan arrived around noon. We had heard on the news that the weather was bad between Houston and central Texas, and he had driven in the rain for most of the trip.

Michell and Dad arrived home from dialysis around 1:15 P.M., which was a little late, but wasn’t unusual for rainy days. For the second time, we had the same two EMTs for the return trip.

Shortly after lunch, Mom walked out to the mailbox to retrieve the mail. She had received a bill yesterday from Scott & White EMS and today opened a much larger one from the CCH, for $650. Compared to the original bill, the amount was small. However, the postal carrier seemed to deliver another medical bill every day, and opening the mail was becoming Mom’s daily aggravation.

I needed to purchase some items for my photography class in Houston, so Stan and I drove to the local Hobby Lobby to see if they carried what I needed. After driving 160 miles, driving around town wasn’t much fun for Stan, but it felt good to get away from the house and spend some time alone with him. I found what I wanted, but it was much more expensive than my art store in Houston, so I decided to wait until I got home.

cross6When Stan and I returned home, we found that everyone was napping. Michell had fallen asleep in a chair in Dad’s room and Mom was sleeping in a chair in the living room. At 3:45 P.M., I heard familiar creaking noises from the baby monitor and entered the bedroom as Dad was trying to get out of bed. I didn’t know if he couldn’t remember that he couldn’t walk or if he was taking everyone’s comments to heart about how well he was doing, but he just would not ask for help when he wanted to get out of bed.

The five of us visited for happy hour before dinner. After dinner, we played another two games of Oh Hell, and Stan and Michell were tonight’s big winners. By 8:30 P.M., Dad was in bed and ready for me to administer trach care and meds.

November 8. Dad had another great night, which meant that Michell, Stan, and I were able to get some much-needed rest. Dad woke up once and had Michell help him to the bathroom, but after that, he stayed in bed until 8:00 A.M.

Dad might have been slow to get up, but when he zipped around the corner in his wheelchair, he was clean, shiny, and perky. I escorted him back to his room for some quick trach care and meds, but after that, he was raring to get the day started.

walkerWhen Mom and I returned from church, Stan and Michell were walking with him with the walker, and he walked 68 steps. We couldn’t convince him to walk again, but he was out and about in his wheelchair for most of the day. Michell was also able to get him to do some of the exercises prescribed by the therapists.

Around the time that Stan was planning to leave, Jo, our next door neighbor, stopped by to see Dad. He had just drifted off to sleep, but we woke him for her visit. She had been very concerned about Dad during the past few months. She was about to leave town for a few days, and Mom and I couldn’t deny her a chance to see Dad. After Jo had left, Stan and Dad played a couple of games of cribbage, and Dad won both games. These guys loved to play cribbage, but most of the time, Dad won.

cross11After Stan had left, Dad seemed a bit down. He commented that the therapists didn’t seem like they were “interested in moving him along.” We did our best to convince him that they had a plan and he was executing it well. I suspected that he was apprehensive about the appointment with the wound care specialist tomorrow, which didn’t help his mood. I also didn’t think that Dad judged his progress relative to his condition when he was discharged from the hospital, but rather from his condition before the surgery.

After dinner, the four of us played a couple of games of Oh Hell, and Mom and Dad won. Since Dad had been home, I had been keeping score. Evidently, I wasn’t such a great scorekeeper because I seldom won.

Although we played a couple of games, Dad started getting ready for bed at 7:45 P.M. I was finished with the trach care and meds and ready to call Stan by 8:30 P.M.

November 9. I woke up at my usual time and wasted no time getting started with my work day. Today would be our first appointment in a doctor’s office since Dad’s return home. I suspected that I would be away from work every bit of two hours. I would need to make the best use of my shortened work day.

Dad had a great night, but he wasn’t feeling great when he woke up at 6:30 A.M. He seemed to feel better by the time that I had administered his trach care and morning meds.

He and Mom joined me in the office for a few minutes to see if they could log on to their bank’s website. Before he was hospitalized six months earlier, Dad had handled most of their banking online. Not surprisingly, he had forgotten the passwords during that time. Mom and I had tried to log on to their accounts a few weeks earlier but had managed to lock up the accounts after multiple unsuccessful attempts. After a few failed attempts of his own, Dad realized that he would need to call the bank to regain access to his accounts.

The fun times on the computer were cut short when Janet arrived at 11:25 A.M. for Dad’s occupational therapy session. She usually visited on Fridays, but because of vacation plans, she had asked to change our appointed time to Monday this week.

I called Brian at EMS and protested the last bill that we had received for the transit service. Since October 24, Scott & White EMS had been providing gurney transit but billing us for wheelchair transit. He made it sound like they were doing us a favor by providing us with a reduced rate, but I had been under the impression that we’d receive gurney transit, which was covered by Medicare, until we had the Hoyer sling. I figured that I wasn’t going to win this battle, but I told him that it was never my understanding that we would pay for wheelchair transit before we started using the Hoyer sling. He apologized for the misunderstanding and said that he would refund us for these charges for the week in question.

After Janet left, Dad took a short nap while the rest of us ate lunch. The EMS wheelchair transit arrived at 1:45 P.M. to take Dad and Michell to the Wound Care Clinic. The transit driver predicted that we’d be there for a couple of hours. Based on the glacial speed that he moved, he was probably correct. Michell and I kept looking at each other while rolling our eyes. I had never seen an able-bodied person move so slow. I drove my car and arrived before the EMS transit. I was able to get Dad signed in and complete the new-patient paperwork by the time that he and Michell arrived. It took longer than it should have to get Dad into the waiting room because the transit driver escorted Dad and Michell through the wrong door.

cross10The waiting room was packed, and as I looked around the waiting room, Dad seemed to look healthier than the rest of the patients. The exam rooms were pretty small. Between Dad, a wheelchair, Michell, the doctor, a nurse, and me, there wasn’t much room to move. We had to perform some Rubix Cube moves to open the door to let the nurse and aides in and out of the room.

Dr. Robert Plemmons said that Dad was healing well and was in better condition than he had anticipated. However, he said that we should limit Dad’s time in the wheelchair to two hours a day. Furthermore, when Dad was in bed, we should relieve pressure on the sore by rotating him 30 degrees laterally. The doctor seemed startled when I said that “that wouldn’t happen” and that “Dad needed to spend as much time out of bed as possible.” Furthermore, “I want to limit Dad’s time in the bed to two hours.”

The doctor insisted that we had to find some way to relieve pressure on the bed sore. I asked about a donut cushion, but he said that they weren’t useful. He looked at Dad’s egg crate foam cushion and asked if he could cut out a V shape. After we had agreed, he pulled out a knife and went to town on Dad’s cushion. When he was finished, Dad had an altered cushion that satisfied all of us. Before we left, the nurse showed Michell how she wanted her to start dressing the wound.

We were finally finished with our 2:30 P.M. appointment at 4:05 P.M. I called the EMS dispatch office and told them that we were ready for our return trip home. I then scheduled Dad’s follow-up appointment. It was a nice day, so I suggested that Michell and Dad wait outside for the wheelchair transit. I had some errands to run, so I left them. When I returned home at 4:40 P.M., I was shocked that they weren’t home yet. When I called Michell, she said that the transit van had had a problem with the lift, which took them more than 15 minutes to fix. No longer in the sun, a strong breeze had picked up, and she and Dad were now cold. They finally arrived home at 5:10 P.M.

We had a short happy-hour visit before dinner and told Mom about the trip to the wound center. Michell said that she was shocked when I disagreed with the doctor. I had reached the point where I was not going to blindly follow doctors’ orders, especially ridiculous ones. All of his other care givers were adamant that Dad needed to get out of the bed. It never ceased to amaze me how doctors could be so focused on a tiny area of the body and not consider the whole person when making their prognostications.

While Mom, Michell, and I ate dinner, Dad took a short nap. He was a little tired from his road trip to the wound center. After dinner, we played cards, and Michell won again. We were finished with cards by 8:00 P.M., and I was finished with Dad’s trach care and meds by 8:30 P.M. I hoped that Dad would sleep well again tonight.

cross6This day had been another major milestone: a trip to a doctor’s office, something that would not have been possible just a few weeks earlier. After six months with this bedsore, which was started by a fall in the hospital in May, it seemed that Dad was well on his way to being healed. One issue down, two big ones to go: swallowing, which would enable us to get rid of the G-tube, oxygen, and trach, and his mobility.

 

The power outage, the EMS, and other things

October 23, 2015. I was able to get in a couple of hours of work before Dad and Michell woke up at 6:00 A.M. I took a short break from work to administer Dad’s morning meds and trach care. Shortly after 8:00 A.M., I was meeting with Manisha, one of my Indian co-workers, when we lost power. It took several seconds for the seriousness of the situation to occur to me. Until a few weeks ago, a power outage was an inconvenience worthy of a fine whine, but now with our dependency on the concentrator and nebulizer for oxygen, electricity was critical for Dad. I called Oncor Energy, and they predicted that power to the area would be restored by 9:30 A.M. I checked our supply of oxygen tanks and called American HomePatient to request an emergency shipment of oxygen tanks. I called Oncor Energy again at 9:00 A.M., and according to the helpful recording, they could not predict when power would be restored; however, crews were assessing the problem. Power to the neighborhood was finally restored around 10:30 A.M. The emergency order of oxygen proved to be unnecessary, but I decided that I would prefer to have an ample supply of tanks on hand rather than risk running out. Dad seemed pretty unaffected by the outage and napped through most of it. During the outage, Michell checked his oxygen saturation level a few times, and it stayed between 97-99%, which was great. The only deficiency caused by the outage was the lack of moisture from the nebulizer to Dad’s lungs.

Tracy, the home care nurse, stopped by around 11:30 A.M. She said that other than his bedsore, he seemed to be doing fine. However, she thought that if anything, Dad’s bedsore was getting worse. I told her that we had an appointment with a wound care specialist in four days. About 90 minutes after Tracy left, Janet arrived for Dad’s occupational therapy session. As usual, Janet and Dad talked nonstop during their session. As she left, she told me that she thought that Dad was making some progress.

Dad complained about all of his tubes and wanted to know when he could get rid of them. I explained to him that it took him five months to get into this condition and it would probably take another five months for him to get better. Evidently, his expectations were significantly different from mine, and he gave me a look that broke my heart. I explained that we were doing everything that we could to ensure success on all fronts, which was why we had the two therapists working with him.

I later texted Adan to see if I had given Dad the correct information. Adan called me, and we had a long talk about Dad’s progress. During our discussion, he said that he thought that my estimate was far too optimistic and that Dad was probably looking at something along the lines of a 10-month recovery. He also said that the trach might be one of the last things to go. Adan also said that we could start the swallow therapy now if he had an order from a pulmonary specialist.

The news that Adan thought that we were ready to start swallow therapy was huge. Less than a month ago, he had told me that because of his chronic aspiration, Dad would not receive swallow therapy. I had implored him to give Dad a chance to fail and not just write him off as a lost cause. After much discussion, Adan had finally agreed to try swallow therapy after Dad regained some of his strength.

We swallow all day long. It seemed like such a simple thing that I had not realized what an intricate process it is. I would later learn that this seemingly simple process is achieved through the careful orchestration of some 80 muscles. According to Adan, simply regaining some of his strength would improve Dad’s chances of success. I felt better after our talk and thanked our lucky stars that Adan had moved from his position as a speech pathologist at the CCH to his current position as the supervisor of rehab services at Scott & White Home Care.

Around 3:00 P.M., I received a call from Brian at Scott &White EMS. He informed me that according to the notes provided to him by his EMTs, Dad could be transported to dialysis on a wheelchair and not a stretcher; therefore, they would start charging us $80 round trip. I explained that it was his EMTs who asked us to wheel Dad outside so that they wouldn’t have to bring the gurney into the house. Furthermore, I told him that although Dad might be able to make the trip there, he was not strong enough for the return trip. Brian said that he would contact the dialysis center to verify my assessment. He called back a little later and said that Scott & White EMS would provide wheelchair transport to dialysis and gurney transport for the return trip, which meant that we would be charged only $40 for each transport. Gurney transport was covered by Medicare, but wheelchair transport was not. Every day it was another nickel, dime, or $40 that we had to shell out to someone.

While Brian and I were discussing the logistics of this arrangement, I texted Sue, the nurse practitioner at the Scott & White dialysis center, and asked if I could call her.

hoyerLift
Hoyer lift and sling

When we spoke a few minutes later, she became annoyed and said that this decision was not for EMS to make and that the dialysis center would not accept Dad without a Hoyer sling. As I had learned earlier this week, Medicare won’t pay for the very inexpensive Hoyer sling unless you also get the more expensive Hoyer lift. Dr. Issac wrote an order for the Hoyer lift, but depending on when American HomePatient received the order and their inventory, we wouldn’t receive it until sometime next week.

I logged off from work at 5:30 P.M. and was good and ready for happy hour. Dad joined us until dinner was ready, at which time he returned to his room. The dishes were clear at 7:15 P.M. and we were ready for the nightly game of Oh Hell. I don’t remember who won, but we played a long game that didn’t end until 9:00 P.M.

October 24. It was dialysis day, and Michell, Dad, and I were up at 4:00 A.M. It was raining like a son-of-a-gun this morning. To enable Dad to be picked up by the EMTs, I had to clear a place in the garage where we could transfer Dad from the wheelchair to the gurney. We hadn’t needed this accommodation before because we had had good weather on dialysis days since he had been home. Dad resumed his normal routine for dialysis day and was ready to go at 5:45 A.M.  Because of the inclement weather, the ambulance was about 15 minutes late.

While Michell and Dad were at dialysis, Mom and I did some chores around the house. I also took this time to wade through some of Dad’s medical paperwork. When I sat down in the kitchen with a cup of coffee and Dad’s home care admittance book, I found a document that stated that his Medicare coverage for home health care might end this coming week. I called the on-call nurse to verify this information, and she said that according to her records, Dad was covered through the end of the year, but she advised me to call the office on Monday. I felt mildly relieved but would feel better after I contacted the office on Monday.

Mom and I went to the bank around 10:15 A.M. As we approached the front door of the bank, a HOP Paratransit bus dropped off a passenger. We asked the rider about the HOP service, and she gushed about the paratransit service and the HOP organization. In addition to the convenience and responsiveness of the service, its cost was very reasonable: just $2 per trip. We told her about Dad’s situation, and she encouraged us to apply for the paratransit service.

Mom and I had other errands to run, but the trip to the bank took longer than we had anticipated. We thought that we should go home now to ensure that we were there when Dad arrived home from dialysis. Shortly after we arrived home, Stan arrived from Houston. When we hadn’t heard from Michell and Dad by 12:30 P.M., I texted Michell, and she replied that they were still waiting for the ambulance. Rainy weather often results in car accidents, and accidents take precedence over transport services. There was nothing that I could do for Dad, but I had Stan drive me to the dialysis center so that we could bring Michell home. I planned to stay with Dad until the ambulance arrived, but as Stan and I arrived at the dialysis center, Dad’s ambulance also arrived. Michell said that she would stay with Dad, so Stan and I returned home. Michell and Dad eventually arrived home at 1:30 P.M.

After his seven-hour trip to dialysis, Dad was exhausted, and from the sound of his breathing, it seemed that his trach needed changing. I spent the next few minutes suctioning him and then left him to sleep for a few hours. He started coughing badly later in the afternoon, and I decided that I couldn’t postpone his trach change any longer. Dad seemed to breathe a little better after the trach change, but he still had a lot of secretions, and he didn’t want to suction himself, so I had to suction him again.

We played a game of Oh Hell after dinner, and we started to put Dad to bed around 9:00 P.M. His oxygen saturation was 98%, which relieved me a little, and he fell asleep almost immediately.

Around midnight, Dad’s coughing woke me and I decided to go downstairs to see if I could encourage him to suction himself. He steadfastly refused to hold the Yankauer wand, and his oxygen saturation readings were erratic. I suctioned him for a few minutes and went back to bed when his coughing seemed to subside.

October 25. I woke up at 6:09 A.M. and I didn’t hear any noise from Dad coming through the baby monitor. Convinced that something bad had happened to him, I bolted up out of bed and ran downstairs to his room to see if he was all right. Thankfully, he was just sleeping, albeit quietly. I returned to my room and changed into my scrubs.

I returned to Dad’s room 45 minutes later and found that he was up and washing his face, but he seemed a bit disoriented. I administered his morning meds and trach care and Michell took over for the remainder of his morning ritual.

I left Dad’s room and went to the kitchen. Mom had started the coffee maker a short time earlier, and I was ready for a cup of coffee. Michell wandered into the kitchen and mentioned that Dad had told her that he wanted to stop dialysis. I knew that he understood the implications of stopping dialysis. I hoped that Dad was experiencing a temporary funk, but I needed to watch him and be supportive. While Michell was with Dad in the bedroom, Stan, Mom, and I had breakfast. Dad finally appeared dressed for the day at 9:15 A.M.

While Mom and I attended church, Stan and Dad tried to fix the VCR. When we returned from church, Dad was napping. Michell told us that at 11:30 A.M. he had wanted to lie down for a few minutes, and he fell asleep as soon as his head hit the pillow. Stan told me that he needed to leave early today, but he wasn’t ready to leave until 2:00 P.M. Before he left, I woke Dad so that he could say goodbye to Stan. Dad was constantly surrounded by female caregivers. Stan was the welcome break from all of the female hovering, and Dad enjoyed their time together on weekends. Shortly after Stan left, Michell was able to convince Dad to do some of his physical therapy exercises.

After dinner, Michell and I asked Dad if he wanted to play cards. He said no, that he was just a “hindrance.” I told him that I was really asking if we were going to play cards this evening because we wouldn’t be playing cards without him. We played a long game tonight, and while he was pretty much exhausted by the end of the game, he wasn’t too tired to beat us again.

We started on our bedtime routine at 8:30 P.M., and I was able to call Stan shortly after 9:00 P.M. I was distressed about Dad’s apparent depressed mood, which was uncharacteristic of him. Stan said that he could understand how Dad’s cup could look a bit less than half full from his perspective. Perhaps Stan was correct.

If I thought that I had been unprepared to be a caregiver for Dad’s physical health, I was totally unprepared to handle depression.

 

How to dress for success for the emergency room

October 17, 2015. I had hoped that we could have slept until 4:00 A.M., but shortly after 1:00 A.M., I was awakened by Dad’s coughing. I listened for a couple of minutes and then decided to check on him. Although we placed the Yankauer wand and suctioning machine near him, he seldom used them during the night. I woke Gale when I turned on the lights with the dimmer switch and opened the trach care kit. His secretions weren’t as thick as I had thought and I was able to return to my room in just a few minutes, and Dad and Gale went back to sleep.

Gale and Dad were awake at 4:15 A.M., but Dad was tired and wasn’t ready to get out of bed until 5:00 A.M. They had their dialysis preparation routine down cold and didn’t need the extra 45 minutes. Dad was ready to leave before the scheduled departure time of 6:10 A.M.

cross3The nurses were ready for Dad when he arrived, so his dialysis session started at 6:30 A.M. Two hours later, his systolic blood pressure dropped below 100, and Gale administered the Midodrine via Dad’s G-tube. Unless the ambulance arrived late, it was great when the dialysis session started and ended early. Fortunately, Dad and Gale didn’t have to wait long, and they were back home by 11:30 A.M. Gale reconnected his humidified air and tube feed and I prepared his midday meds. He was pretty tired and napped for the next three hours.

When Dad woke up, he and Gale sat outside on the patio. He wanted to compose some lists, but his impaired dexterity still prevented him from writing. Gale was always willing to sit outside with Dad and talk, and she happily agreed to act as his stenographer while he dictated. When Mom and I were ready for happy hour, Dad said that he was tired and returned to his room, where he stayed until we played cards at 6:30 P.M. All that sleeping today seemed to pay off for him, and he beat us again at cards.

I was tired and was glad to start preparing Dad for bed at 8:30 P.M. By 9:15 P.M., he was in bed and had received his nighttime meds, and Gale had returned to the bedroom after her own nighttime preparations. Stan was on call and could not come to Temple this weekend. Before crashing for the night, I called him and we talked about our very different days.

Dad slept well for about 90 minutes, and then he began to be restless and have periodic coughing spells. His coughing and restlessness woke Gale but was not loud enough to wake me.

October 18. At 1:00 A.M., Dad’s coughing finally woke me. I listened for a minute or two before Gale paged me through the baby monitor. Gale suspected that he needed suctioning, and she was correct. He required a lot of suctioning, which surprised me because he hadn’t required much suctioning when he went to bed. Shortly before 2:00 A.M., I was finished with him, had cleaned up after myself, and had returned to my bedroom. I dozed on and off for a couple of hours but heard him coughing again at 4:00 A.M. As tired as I was, I knew that sleep was impossible. I got out of bed, dressed in my scrubs, and returned to Dad’s room.

Dad was in a bad mood and his attitude toward me was a little pissy and juvenile, and had the roles been reversed, he would have reprimanded me for my behavior. He straightened up somewhat when Gale, the good cop, returned to the room. She helped Dad out of bed and into the wheelchair, and he wheeled himself into the bathroom and coughed up some more of his secretions. A couple of minutes later, he said that he was tired and he had Gale help him back into bed where she connected his humidified oxygen and tube feed. Gale and I both used the opportunity to get a bit more sleep.

cross4When he woke a couple of hours later, he was in a much better mood. Because Dad could not take anything by mouth, all of his meds were crushed, mixed with water, drawn into a large syringe, and inserted into his G-tube, directly into his stomach. When I reached for the Y extension line that connected the G-tube with the tube feed line and provided the input valves to the G-tube, a loose end came up in my hand. I didn’t know how long that it had been disconnected from the G-tube, but Dad and the bed were a sticky mess. It was as if we had thrown a couple of milkshakes in bed with him.

I tried to reinsert the Y extension into the G-tube, but it wouldn’t stay. I couldn’t figure out what was wrong. I had Gale give it a try, but she also struck out. We plugged the G-tube, turned off the Kangaroo pump, and proceeded to clean up Dad and the bed. I wasn’t sure what to do about the G-tube, so I called Home Care. It was Sunday, so the after-hours operator had to contact the on-call nurse. The on-call nurse called a few minutes later and said that she would come by so that she could lay eyes on Dad; however, she would not arrive for at least a couple of hours.

Instead of waiting around the house for a couple of hours, Mom and I decided to go to church. As we were leaving the church, Gale called and said that the nurse had just left and that she had noticed something that we had overlooked: the tip of the Y extension had broken off inside of the G-tube. Gale said that the nurse added that she “had never seen anything like this,” one of the worst phrases in the English language. Her advice to us: call 911 and take Dad to the hospital.

cross2Shortly after Dad’s return home from the CCH a few weeks earlier, Gale and I were careful about the way in which we handled the Y extension because we didn’t know how long the tubing or connectors would last. Just a few days ago, we had asked the nurse if she could acquire more of them for us. Fortunately, she was able to find one and it was still in its packaging. I planned to bring it with me to the hospital later today and was determined that we would not come home until it was securely inserted in Dad’s G-tube.

On the way home from church, Mom and I stopped by the pharmacy to pick up a refill of Midodrine. We had only two pills left and Dad needed four on Tuesday. While at the pharmacy, we learned that we could not get a refill until Tuesday. This was not a 24-hour pharmacy, so there was no way to get the pills before dialysis. Correction: there was no way to get the pills before dialysis and have them covered by Medicare. After a no-win discussion, we paid $30 for two pills.

When Mom and I returned home from the pharmacy, I changed into my favorite navy blue scrubs. The hospital was a dirty and germy place and I didn’t want to wear my street clothes. Although I rode in the ambulance with Dad, passengers are not permitted to enter the emergency department with the patient. I had to stand in line with the walk-in patients and then have someone direct me to him. When I found Dad, he was being triaged and questioned by the nurses, and I heard him say that they would have to talk with his daughter. The resident was Dr. Victoria Klovenski, who had been the resident when Dad visited the ER on October 6.

yExtensionAs I explained the problem, Dr. Klovenski enlisted the assistance of a medical student. This case was a little out of the ordinary and presented them with a problem-solving exercise that they never experienced in medical school. After gathering a variety of EENT implements, they tried a couple of times to pull out the tip, but couldn’t get a grip on it. The student finally tried pushing it into the G-tube with some sharp implement. When it became apparent that this approach wouldn’t work, he pulled for all he was worth to retrieve the implement that was now firmly impaled in the tip, and in so doing, pulled out the broken tip. The puffed up young medical student said, “I just have to say that I feel a little proud.” You would have thought that he had discovered the cure for cancer. It was a lighthearted scene, and I suspected that cases like this one were a nice diversion from tending to accident and gunshot victims. Before we left, Dr. Klovenski asked me why I thought that Dad had a G-tube because he really had a J-tube. I told her that I didn’t know the difference, but that the doctors at the CCH had told me that it was the former. I made a mental note to resolve this conflict.

cross1In addition to the lightheartedness of the visit, this trip to the hospital felt different for me too. From the moment that I arrived, everyone seemed to listen to what I had to say. I felt as if my IQ had suddenly increased. While Dad and I were waiting for the ambulance to take us home, one of the staff members asked me where I worked, and then it dawned on me. I had worn my navy scrubs: the color worn by RNs. Mom always told me to dress for success. I guess first impressions are important.

The entire trip to the hospital, beginning with the ambulance ride from home and back took less than two hours, which was like an emergency-room miracle. When we returned home shortly after 3:00 P.M., Dad was in a great mood and he and Gale chatted while I set up my TV trays for the weekly trach change.  Other than the 10 seconds of terror surrounding the actual removal and replacement of the trach, the change was uneventful and didn’t interfere with our 5:00 P.M. happy hour.

Dad returned to the bedroom to nap while we ate dinner. He was still groggy when I went to his room to tell him that we were ready to play cards. While he was resting, I decided to administer his nighttime meds. By the time that I was finished, he was awake and ready to play cards, but tonight his naps failed him and I was the big winner of Oh Hell.

October 19. I woke up at 3:45 A.M. when my iPhone alarm went off. I quickly donned my scrubs and started the coffee maker. As I went to my parents’ office to start my work week, I peeked into the master bedroom and noticed that its residents were sleeping.

Shortly before 8:00 A.M., I was returning to my office with my third cup of coffee and noticed that Gale and Dad were stirring. After finishing my coffee, I returned to the bedroom and administered Dad’s morning meds and trach care, and then returned to work.

I had a busy morning at my virtual place of work and saw Dad during trips to the kitchen for coffee. At 10:00 A.M. I was in the kitchen when I heard the wheelchair moving at a pretty quick clip down the hallway. I had reached the point where I could sense Dad’s mood and the way that he felt by the speed at which he piloted the wheelchair. As he rounded the corner towards the kitchen, he looked great. Gale said what we all thought: he looked like one sharp-dressed man, and Dad said that he felt good.

Shortly after noon, Brenda arrived for Dad’s physical therapy session. I took a short break from work and called American HomePatient. Mom had asked me if we could get rid of the six cases of supplies in our front hallway. I had told her that I would see what we could arrange. All of American HomePatient’s services were tied to Medicare and I had no idea how they handled returns. When I explained to the service representative that the trach care sets that they had sent us were very small, she was surprised because the correct size had been ordered. When I told her that the trach tubes were FR-8, she said that they were for infants and that she would place a pickup order and send us the correct items.

cross5While I had her on the phone, I told her that I also needed to order some Corpak Y Extensions to connect the tube feed tubing to the G-tube. She told me that she could not provide this item without an order from Dad’s primary care physician. I told her to forget it and that I would just buy them myself. She proceeded to lecture me about how I couldn’t just walk into a Walgreens and buy these supplies. During our call, I had my iPad sitting next to me, which I reached for during my lecture. She required a couple of minutes to complete her paperwork for the exchange order. Before our call had ended, I had placed an order with Amazon.com for two packs of 5 extensions for a grand total of $21.92. I was sleep deprived and cranky and was becoming weary of the steady drumbeat of things that required a PCP. No wonder the providers at the CCH were so skeptical about our ability to take care of Dad. The system seemed to be designed for you to fail. How people who lacked our resources were able to manage everything and navigate the confounding system was a mystery to me.

After Brenda left, Dad napped for a couple of hours, but he was ready to go outdoors to the patio at 2:30 P.M. I hated that he was off of his humidified air for a couple of hours, but the weather was beautiful. Mom and I joined him and Gale on the patio for happy hour.

While Gale, Mom, and I ate dinner, Dad returned to his room for some much-needed humidified air. After dinner, our good day continued with a spirited game of Oh Hell, and Mom was tonight’s winner. We tried to get Dad to bed early on the nights before dialysis, and by 8:30 P.M., we were finished with our nightly rituals and he was sleeping. I hoped that Dad’s very good day would be followed by a very good night.

The battle lines were being drawn between caution and freedom

October 11, 2015. It was close to 12:30 A.M. and we had been asleep for less than an hour when Dad started coughing. After 90 minutes of his intermittent hard coughing, Dianne convinced him to use the Yankauer wand attached to the suction machine to remove some of his own secretions. Within a few minutes after using the wand, Dad was sleeping. Dianne also went back to sleep, but at 4:15 A.M., something woke her. To her horror, Dad was on his knees on the floor. He needed to use the bathroom and for some reason, he thought that he could get there by himself. In a panic, Dianne paged me through the baby monitor.  The anxiousness in her voice propelled me out of bed and down the stairs. The two of us tried for a few minutes, but we could not get him off of the floor and back into the bed. Fortunately, my husband was in town. I called for Stan through the baby monitor, and the three of us were able to get Dad off of the floor. At 4:50 A.M. we finally had him back in the bed. Once again, he was lucky that he hadn’t hurt himself. I could only suppose that when he woke up at night he couldn’t remember that he couldn’t walk or that he was hooked up to two devices. Depending on how he might fall, he could put a strain on his trach and decannulate himself or pull out his G-tube. Just the thought of such things happening gave me the heebie-jeebies.

I woke up again at 6:45 A.M. and woke Dianne and Dad. Dianne and I assisted Dad into his wheelchair and he wheeled himself into the master bathroom to wash his face, brush his teeth, and shave. Dianne gave him a sponge bath and helped him get dressed. He might have needed a few days to reacclimate himself to his house, but after 148 days in a hospital gown, he knew what he wanted to wear and told her where to find it. When he was all shiny and dressed, I stopped by his room and administered his trach care and morning meds. When I was finished, Dianne and I reattached his humidified oxygen and tube feed.

After breakfast, Mom shooed Dad out of the master bath and I went upstairs, and the two of us got ready for church. As we drove to church, I updated Mom on the activities of the previous night. We both enjoyed our respite at church and then returned home to an empty house, although there were two cars in the garage and three cars parked out back.

It was another beautiful day and shortly after Mom and I had left for church, Dad told Dianne that he wanted to go outside. She pushed him outside and she helped him navigate his wheelchair over the entire backyard. My parents’ house sits on an acre lot, so Dad had a lot to show her. After being out in the sun for 40 minutes, they moved to the patio and sat in the shade. Under the best of circumstances, spraying the trach bib provided only a modicum of moisture. Although Diane did her best to keep Dad’s trach bib wet with the spray bottle of sterilized water, the outside air was very dry, so he was breathing in a lot of dry air. After finding them on the patio, I became a little agitated that he had been off of the humidified air for a couple of hours. After a bit of foot-tapping from me, Dad agreed to come back inside.

Just a short time later, Dad said that he needed to go to the workshop in the garage to find a tool for Stan. It was 99 degrees outside and still dry. After he had spent 10 minutes in the workshop with Stan, I insisted that he go to his room for humidified air and nutrition. I kept pestering him to come inside, but he was uncooperative and became angry at my repeated attempts to get him back indoors. I was exasperated. I tried to explain that any time that he spent outdoors was time that he breathed dry air into his lungs and deprived his body of nutrition, yet I was the bad guy.

Finally, at 4:15 P.M. we finally got him back in bed and hooked up to his essential lines, and he quickly drifted off to sleep. Before Dad closed his eyes, Stan came to his room to say goodbye. Stan was returning to Houston but would come back next weekend.

Dad slept until 6:00 P.M., at which time we had happy hour. Sometimes he would sit and talk with us during happy hour, but today he spent most of the time wheeling himself around the house. I can’t begin to imagine how difficult it would be to not be able to sip a drink or eat my favorite foods, and sometimes it seemed that the denial of one of life’s pleasures depressed him. When Mom announced that dinner was ready, Dad wheeled himself back to his room. Dianne trailed after him and helped him back into bed and attached him to the tube feed and humidified air.

By 7:00 P.M., we had the dining room table cleared and the dishes in the dishwasher. We helped Dad back into his wheelchair and we played another cutthroat game of Oh Hell.

Tomorrow would be a work day for me, so I was glad when we started getting Dad ready for bed at 8:45 P.M. Truth be told, it was still past my bedtime. Dianne helped Dad get ready for bed and I administered the nighttime meds and trach care.  After I left the room, Dianne coached Dad through his exercises prescribed by the physical therapist.

He had had a full and busy day, and he fell asleep as soon as he finished his exercises. His coughing briefly woke him up at 11:00 P.M.

October 12. Dad slept pretty well until 1:00 A.M., at which time he started coughing again. Again, Dianne convinced him to use the Yankauer wand and suction machine to clear out some of his secretions. He didn’t sleep much afterward and was very restless. I could hear his coughing and gurgly breathing through the baby monitor, and at 3:00 A.M., I got up, donned my scrubs, and suctioned secretions from his trach. When I was finished, Dad assumed that it was time to get up. I explained to him that it was Monday and that he didn’t need to get up early for dialysis, and he agreed to go back to sleep.

After I cleaned up the trach-cleaning supplies, I went to my parents’ office and logged on to work. For about three hours, I was the only one who was awake. Although I was on Skype almost nonstop, my talking didn’t disturb Dianne or Dad. In addition to Dad being hard of hearing, the oxygen generator was noisy and blocked all sound outside of the master bedroom. My mother was sleeping in a room on the opposite side of the house. I could crash cymbals and not wake up anybody.

At 6:30 A.M., the residents of the master suite started stirring. Dianne unplugged Dad from the oxygen and the Kangaroo pump and helped him into his wheelchair. Once he was situated, he could wheel himself into the master bath and wash up and shave. Before helping him get dressed, Dianne checked his blood pressure and oxygen saturation. His blood pressure was good, but his oxygen saturation was still hovering in the low 90s. I administered his morning meds and trach care and went back to work.

While Dianne got ready for the day and ate breakfast, Dad sat in his room, received humidified air and nutrition, and read the newspaper. At 9:00 A.M., he was ready to go outside and have Dianne help him with some yard work. When he said he wanted her help, he meant that he would tell her what to do. I told him that our aides were not here to do his yard work. Dianne interrupted, insisting that she would love to go outside and do some light yard work. I shook my head and headed back to work while Dianne wheeled Dad outdoors.

Dad and Dianne stayed outside for about an hour, at which time I urged them to come back inside for air and nutrition. I couldn’t decide whether I was starting to feel like a broken record or a nag. Dad grudgingly came back indoors and let Dianne reattach him to his humidified air and tube feed. He fell asleep and slept until 11:30 A.M. We were expecting the nurse this afternoon and I wanted to be sure to administer his trach care and change his dressing before she arrived. When I reached to pull off the speaking valve, it wouldn’t budge. I. Could. Not. Believe. It. It was déjà vu all over again. My only consolation was that the nurse would be here soon. I decided to hold off on changing the trach until she arrived; perhaps she might have better luck removing it.

Like an answer my prayers, the nurse was able to remove the speaking valve, and without any muss or fuss. Before she left, she gave me some tips for handling the speaking valve. As the nurse was walking out to her car, the physical therapist aide entered the driveway. Dianne watched the physical therapy session so that she’d be able to assist Dad with his daily exercises. Shortly after the therapist left, Dianne and Dad went back outside. After about 15 minutes, I was pestering them to come back indoors. Dad agreed and Dianne hooked him back up to his air and tube feed.

At 5:10 P.M., I was finished working for the day and was ready for our happy hour. At that moment, Dad and Dianne went back outside for 10 minutes. I couldn’t believe how much time he was spending outdoors. Mom, Dianne, and I were ready for dinner by 6:30 P.M., which enabled Dad to spend some time on the humidified oxygen and tube feed.

After dinner, we played another rip-roaring game of Oh Hell. Although the game can be challenging, it’s even more challenging when you don’t deal the cards correctly—something that seemed to happen often with Dad’s impaired dexterity. Dianne and I started getting him ready for bed at 8:45 P.M. After Dianne helped him to get ready for bed, I administered his nighttime meds and trach care and sat with him while Dianne prepared herself for bed. At 9:15 P.M., I finally dragged myself upstairs to bed, called Stan, set my alarm for 3:30 A.M., and fell asleep.

October 13. With the exception of a little coughing around 12:30 A.M., Dad slept through the night until I woke him and Dianne at 4:20 A.M. As I returned to work, they resumed their morning routine in preparation for dialysis. When they were finished, Dianne dashed to the kitchen to grab a quick bite of breakfast and I returned to the master bedroom and administered Dad’s Midodrine and trach care. The Scott & White ambulance arrived about 15 minutes early, but Dad was ready. Dianne drove her car and followed the ambulance to the dialysis center. The good thing about being picked up at 6:00 A.M. is that, if you’re lucky, your dialysis session will start earlier, which is what happened today.

The aides at One on One Personal Care switched out on Tuesdays, which was a little difficult logistically with Dad’s dialysis. Gale arrived at the dialysis center at 10:30 A.M. and found Dianne and Dad just as Dad’s session was ending. Dianne drove back to the house, picked up her belongings and paycheck, and drove to her next assignment. The aides worked every other week and rest during the alternate weeks. To accommodate our dire predicament, she sacrificed three days of her week off. Gale stayed with Dad until he was picked up by the ambulance and then drove to our house.

aidesAndDad
Dianne, Dad, and Gale at the dialysis center

It was good to see Gale again. She looked refreshed but confessed that she had been dog tired when she left us a week earlier. During her first night home, when her husband got out of bed to use the bathroom, she bolted up in bed and said, “Where do you think you’re going?” It took her a couple of days home to wind down.

Gale marveled at the change in Dad and said that he seemed much stronger in just one week. A week earlier, it took considerable effort from the two of us to transfer him from the bed to his wheelchair or to the bedside commode. Now she could transfer him with only a little assistance from me.

Dad spent most of the day resting, which meant that he had a few uninterrupted hours of humidified air and nutrition. At 5:00 P.M., we got him up for happy hour and then he returned to his room while Mom, Gale, and I ate dinner. Although she hadn’t won a game yet, Gale was now a pro at Oh Hell. Dad still had a difficult time dealing cards and our cardinal rule was to always count our cards before starting to play a hand.

We breezed through our nighttime routine. After Gale helped Dad get ready for bed, I administered his meds and trach care while Gale got herself ready for bed. When she returned to the room at 8:45 P.M., I retired to my bedroom, set my alarm, called Stan, and hoped for another few hours of uninterrupted sleep.

We quickly drifted back into our routine. Dad and Gale were both kidders, and they resumed their friendly banter.

I couldn’t believe the difference in this day and Gale’s first day with us. I was still constantly on pins and needles and worried that something could go wrong at any minute, but at least we acted like we knew what we were doing.

 

Another new experience: premature aide loss

October 8, 2015. At 1:30 A.M., the Kangaroo pump alarm went off, indicating that the tube feed bag was empty. I got up and went downstairs to Dad’s room and woke Amanda so that she could change the bag. Dad was hard of hearing, so I could understand why he hadn’t heard the alarm, but it was about two feet from Amanda’s bed, loud, and annoying, and I didn’t understand how Amanda could sleep through it. The darn thing woke me through the baby monitor.

About 90 minutes later, Dad was awake and tried to get out of bed. It was dialysis day, so Amanda decided to help him get up and get ready for the day. By 4:00 A.M., they were ready for me to administer the trach care. Dad had plenty of time to read the paper, which usually arrived before 5:00 A.M., while Amanda took her morning shower.

dadGurneyHis dialysis session was happily uneventful, with no extra bleeding or trips to the hospital. To top it off, the ambulance was on time for the return trip, and Dad and Amanda arrived back home at 11:35 A.M., which was record time.

The dialysis sessions usually wore out Dad, and it wasn’t unusual for him to take an afternoon nap while we ate lunch. He slept off and on until 3:00 P.M., at which time he wanted to get up because he had company. Our neighbor, Barbara, who was married to Dr. Bob Probe, brought Dad a homemade chocolate cake and some flowers. She seemed surprised when she learned that he wasn’t swallowing yet. We told her that we’d give Dad the flowers and we’d be glad to eat the chocolate cake.

After Barbara left, Amanda convinced Dad to do the exercises that the physical therapist had prescribed.

Dad had been away from the house for 148 days. Fortunately, with the exception of writing an occasional check, Mom and I didn’t have to deal with any financial issues. He had set up their finances so that incoming money automatically went to certain accounts and almost every bill was automatically paid. Now, some of the hospital bills were arriving, and Mom thought that this was a good time to start reorienting Dad to the finances that he had so artfully set up. While they were busy with the finances, I was in the kitchen preparing dinner. While dinner was in the oven, I checked my email and was surprised to see the following message from Becky Crabtree, the owner of One on One Personal Homecare Services:

Good afternoon,

Amanda called me this afternoon asking that she be replaced. She didn’t think she was a good personality match for this position. I have Dianne scheduled to be there in the morning. She is a fill in and will stay until Gale returns on Tuesday. 

I’m sorry things didn’t work out with Amanda. Unfortunately, this happens occasionally. Again I apologize for this change.

princessCushionAlthough Dad seemed to like her, I wasn’t enamored with Amanda, and having a new aide would cause multiple interruptions in my work day to train another person. When the doorbell interrupted my pity party, my first thought was that I wasn’t in the mood for company, but I was relieved to see that we had just received a package from Amazon.com. Dad’s padded commode seat cushion had just arrived. The cushion was four inches thick and appeared as if it would have satisfied that princess who had all that trouble with that pea.

When Mom and Dad were finished reviewing their finances, Dad took another short nap while Mom, Amanda, and I ate dinner. Dinner conversation was a bit awkward as we avoided speaking about the elephant in the room.

When I started to administer Dad’s trach care, I encountered a problem with his speaking valve: it wouldn’t come off. When I tried again, Dad exclaimed that I hurt him. I tried one more time before resigning myself to the fact that I would have to change his trach so that I could remove his speaking valve. I couldn’t believe that I had to change out his trach just three days after the last time, but I couldn’t think of any alternative. Besides the fact that I hated changing the trach, I didn’t like changing it when I was so tired. I grabbed the extra TV tray and had Amanda assist me. It was the first time that she had seen a trach tube changed. As much as I hated to perform this little procedure, I felt a tiny bit more confident about doing it now that I had soloed twice.

By 10:15 P.M., Amanda had had her nighttime shower and we had Dad all medded up and in bed. I was exhausted and would need to get up in just a few hours for work. Within minutes of getting myself into bed, Dad was wide awake, telling Amanda that he needed to get up because he had work to do outside. He seemed confused and kept trying to get out of bed. He—and Amanda and I—finally fell asleep around midnight.

October 9. I slept until my iPhone alarm woke me at 3:30 A.M. I listened to the sounds coming through the baby alarm, but all I could hear was the sound of the oxygen concentrator. I dressed in my purple scrubs and headed downstairs to my parents’ office, where I had carved out a place for my computer so that I could work. On my way to the office, I looked into Dad’s room, which was next to the office, and noticed that he and Amanda were both sleeping.

At 5:00 A.M., I heard Dad stirring, so I took a short break from work and administered the trach care and morning meds. Sometimes I liked to go into his room just as he was waking up. He would open his eyes wide and say, “Hi, Mel!” and he always looked like he was glad to see me. When I was finished with Dad, Amanda and I transferred him to the wheelchair, and he wheeled himself into the bathroom to wash his face. Amanda helped him get dressed, and then she assisted him with his daily exercises and hooked him up to the feeding tube and humidified oxygen. About 15 minutes later he asked if he could leave the bedroom. Amanda disconnected his tube feed and oxygen concentrator and hooked him up to the oxygen tank. When he wheeled himself out to the family room, I told him that Amanda had to leave us and that Becky was replacing her with an aide named Dianne. He seemed genuinely sorry to hear that she was leaving. I didn’t tell him that it was Amanda’s idea to leave or that it wasn’t a terrible turn of events for Mom and me.

Shortly before 9:45 A.M., Dianne arrived and she was a bundle of energy. She had several years of experience and was closer in age to Gale than to Amanda. Amanda gave her a quick orientation and then she grabbed her bags and left the house so fast that one might have thought that her suitcase was full of our silver. Within 10 minutes after Amanda’s departure, Dad and Dianne had bonded and he gave her a tour of the house.

Shortly after the home tour, Dad wanted Dianne to take him outside. The weather in central Texas during October is usually very nice, and today we were experiencing Chamber of Commerce weather. Dad had been off of his humidified oxygen and tube feed for a couple of hours. Although I was unsuccessful in getting him to come indoors, he eventually had to come in when the nurse arrived at 11:35 A.M. Then, the nurse probably hadn’t even pulled out of the driveway before Dad was sound asleep. Not only did he sleep through his midday meds, we didn’t seem to disturb him when we changed the sheets on Dianne’s bed. He eventually woke up in time for happy hour. We didn’t play cards tonight, and we started preparing him for bed a little earlier than usual. Dianne was pretty sharp, but because it was her first night, preparing Dad for bed took a little longer than usual. I sat with Dad while Dianne prepared herself for bed.

October 10. I don’t know if he wanted to give the new aide a break or if he had worn himself out the previous day, but Dad did not wake up until 5:30 A.M. In addition, he had slept through the night. Perhaps he was trying to lull Dianne into a false sense of security.

It was Saturday, so I was thrilled to have had the extra sleep. My husband would be arriving soon to visit and to help out with the yard work. When I heard sounds through the baby monitor of Dad and Dianne stirring, I got up, dressed in my scrubs, and went downstairs to his room. I found him in the master bathroom, washing his face and brushing his teeth. When he was finished, I administered his morning meds and trach care. At 6:05 A.M., the phone rang. Back in the day, we might have wondered who in the world be calling us that that hour. Now, we correctly surmised that it was the EMT service from Scott & White, informing us that they would be late.

A few days earlier, the EMTs had asked us if we could wheel Dad outside where they would then transfer him from the wheelchair to the gurney. Our house had some twists and turns that were difficult for the EMTs to traverse with the gurney. Each time that they entered the house with the gurney, they had some close calls with walls and artwork. We weren’t sure if Dad could make the transfers, but we were willing to give their suggestion a try. The EMTs provided him with ample support (some could lift him) and he was able to make the transfers without too much trouble. Most dialysis patients are often weak after dialysis, so the return trip transfers from the gurney to the wheelchair were a bit difficult and required more assistance from the EMTs.

As it turned out, the EMTs were on time, and Dianne wheeled Dad outside and watched as the EMTs transferred him from the wheelchair to the gurney. Dad and Dianne arrived at the dialysis center at 6:45 A.M. and by 7:00 A.M., he was receiving dialysis treatment. Dad slept for the first 15 minutes, but after he woke up, he and Dianne chatted for the remainder of his four-hour session. During Dianne’s orientation, Amanda hadn’t mentioned how to secure an ambulance for the return trip at 11:00 A.M. Truth be told, Gale had never mentioned to me what she did, so I had no clue. About 10 minutes before the end of his session, Dianne asked the nurse who had to call for the ambulance. The nurse placed the call for her. I didn’t know if that was the normal procedure, but it worked for Dianne. The ambulance arrived at 11:15 A.M., and they were home by noon.

Dad was pretty weak, and the transfer from the gurney to the wheelchair was a bit more awkward than usual. He was tired and agreed to go to bed so that we could resume his humidified air and tube feed. Before Mom, Dianne, Stan, and I ate lunch, I administered his midday meds, during which time he fell asleep and didn’t wake until almost 4:30 P.M.

I decided that I liked wearing scrubs, but I didn’t like having only one set. Now that I understood the sizing, I accessed my favorite website and ordered three more sets in navy, black, and fuchsia, three of the colors that I saw nurses and therapists wear at Scott & White.

Before I had had the problem with the speaking valve a couple of days ago, I had changed out Dad’s trach on a Monday, which meant that I would need to change it on the following Monday. With work and my short and interrupted nights’ sleep, I was pretty tired during the work week. Although I now felt a bit more confident with the trach change, I’d prefer to have the change-out day fall on a weekend day. With that goal in mind, I changed Dad’s trach again. Because he had spent so much time away from the humidified air, his secretions built up and hardened in his trach, so changing out his trach more often was probably advisable; however, I didn’t want to stay on a two-day cadence for trach changes.

Similar to the two aides who preceded her, Dianne had never witnessed a trach change and was very interested in the process. She also proved to be a good assistant. Shortly after we finished the trach change, the five of us sat on the back patio for an hour to enjoy the beautiful weather. At 6:00 P.M., Dianne took Dad back to his room and we hooked up the humidified oxygen and tube feed. He took a short nap and woke up as Mom, Dianne, Stan, and I were finishing dinner.

After we cleared the table and finished cleaning up the dishes, Dad announced that it was time to play cards. He explained the rules of Oh Hell to Dianne, and it was game on. He tried to keep score, but the loss of manual dexterity prevented his being able to write to his satisfaction, so I took over the score-keeping. The five of us played a long version of the game and then sat around the table talking. At 10:15 P.M., we finally started to prepare Dad for bed. After Dianne helped him into his night clothes and into bed, I administered the trach care and meds. I sat with him until Dianne returned to the room around 11:30 P.M. and then I headed upstairs to bed.

Now that I had changed Dad’s trach three times, I noticed that he seemed to cough more for about 30 minutes afterward. I didn’t know if that was normal, or if perhaps I applied too much lubricant on the trach tube before inserting it into his trachea. I didn’t want to hurt him during the trach change, so I preferred erring on the side of too much lubricant. What amazed me was that he didn’t know what I was doing when I changed the trach, and he said that he didn’t feel anything. I was thankful that he didn’t approach the procedure with the same sense of dread and apprehension that I felt.