Transitioning from sick room back to bedroom

February 22, 2016. After all the excitement of going to church yesterday, today seemed almost boring, but in a good way. Dad didn’t seem to have much of a cough this morning, and for a while, I thought that we had vanquished his congestion. His cough came back sporadically during the day, but it seemed like we had turned a corner.

sickroomCross2Another normal activity returned today when Mom attended her book club with her good friend Marilyn. I was thrilled that she was able to get out of the house and visit with her friends. When you’re in caregiver mode, your new normal world becomes very small, and it seems almost strange to return to your former normal life.

While Mom was away, I acted as Dad’s spotter while he made three trips up and down the front steps with his walker. He appeared fearless, but my heart was firmly planted in my throat. It was all I could do to keep my hands off of his shirt, although I’m pretty sure that I did grab the back of his shirt a couple of times. It probably didn’t do much for him, but it made me feel like I could save him from a fall. Fortunately, I didn’t have to test that theory.

Brenda had been working with him to be independent with a cane. Up until now, he had used his cane and walker when he was away from the house but relied on the wheelchair when he was at home, saying that he could move faster with it, which was true. He practically zipped through the halls in that wheelchair. The aides had commented on how well he handled the contraption. Michell had marveled at how the walls held no telltale signs of a wheelchair in residence. Kathleen, the physical therapist, had commented that Dad was the opposite of most of her patients, who used wheelchairs away from home and canes and walkers when they were at home. We were expecting weekend guests within the next couple of weeks, which might have inspired Dad today to get out of his wheelchair and spend more time walking with his walker and cane when he was at home.

sickroomCross3While Dad was feeling adventurous, he wandered into the pantry to get a can of fruit. He stooped just a bit too low and struggled mightily to get up. I wasn’t in the best place to help him, and he was pretty winded when we finally got him up and out of the pantry. We agreed that he was not quite ready for knee bends.

After I logged off from work, I prepared a casserole for our dinner. While waiting for dinner, we enjoyed our happy hour together and watched the news.

We played a three-handed game of Oh Hell, and Dad won. Mom was a little shaky on threading the tubing in the Kangaroo pump, but she handled the meds like a pro.

sickroomCross1February 23. Today marked the 148th day that Dad had been home from the hospital. He had now been home as many days as he had been hospitalized. A month or so after Dad returned home, I had had a conversation with our friend Adan about what to expect regarding Dad’s recovery time. I had asked if Dad would require one day of recovery for each day of hospitalization, and Adan had said that he thought we might be looking at a 2:1 ratio. Dad wasn’t close to where he was when he entered the hospital some 236 days ago, but I suspected that Adan was correct in his assessment. Because I didn’t want to discourage him, I didn’t want to tell Dad that he was merely at his halfway point to being recovered. He seemed to be pushing himself to resume his former life.

We were all up early—some of us (Dad) earlier than others. Usually, because of the baby monitor resident in the master bedroom, whenever Dad woke up, I also woke up. Last night, after a relatively early night for all of us, I had slept soundly, even through a hard rain and a thunderstorm.

sickroomCross2Mom fixed Dad his typical breakfast of Cream of Wheat and then drove him to dialysis. Fortunately, the rain had stopped before they left. During dialysis, Dad had 1,900 ml of fluid removed. Our routine had started to settle down, which enabled me to put in a full and uninterrupted day of work. During my lunch break, I was able to get out of the house for a walk, which turned out to be a short one because of the cold and windy weather. I’m more of a fair-weather walker.

Mom and Dad were able to take a nap after lunch. When we finished playing cards at 7:30 P.M., the three of us were tired and ready to call it a day. By 8:00 P.M., Mom had administered Dad’s meds, and I was on my way to my room for my nightly call to Stan.

February 24. Dad woke up around 3:00 A.M. and asked if he was still tied up. Mom disconnected him from the Kangaroo pump so that he could use the bathroom. She then told him to go back to sleep, which he did, sleeping until 6:00 A.M.

sickroomCross3Kathleen, the physical therapist, called and said that she would arrive to assess Dad’s progress sometime between 11:00-11:30 A.M. I was looking forward to her approving Dad for another 30 days of physical therapy. When she arrived at 11:15 A.M., she watched Dad walk with his cane and told us that Dad was doing great, so great that she was discharging him from physical therapy. With this announcement, Dad had now been discharged from home care, occupational therapy, swallow therapy, and now physical therapy. For better or worse, we were now truly on our own. Yay?

After lunch, Dad and I went grocery shopping at Wal-Mart, and by the time that we returned home, we walked over 15,000 steps for the day. He had his walker with him, but I had him push the cart, which gave him some stability. After we got home and brought in the groceries, he and Mom went back out for more groceries, this time to Sam’s.

Dad did a lot of walking today, probably more than most people, but he still needed to exercise to build his strength and improve his balance, but he would shut down the conversation when I tried to broach the subject with him.

When we were getting Dad ready for bed, I checked his pill box and discovered that he had not received any meds since last night. Until the dispense of meds became second nature for Mom, I would have to keep a more watchful eye on Dad’s meds.

February 25. Today I was more worried about Mom than Dad. With the aides gone, she had more responsibility. I didn’t want to assume all of the work of the aides because I wanted to ensure that Mom could tend to Dad during my periodic trips to Houston. But now, it seemed that the extra work was beginning to take its toll on her, and for the first time, I thought that she looked frail.

sickroomCross1After breakfast, she insisted on going to Penny’s to buy linens for the new bed. While she was gone, Dad and I talked about him assuming more responsibility for his care. So that Mom would not need the extra burden of administering his medications, I proposed that Dad prepare his medications and then he and Mom could administer the crushed and diluted cocktail in his G-tube, and he agreed. I also got him to agree to drink one Ensure and one Nepro a day, which would provide him with 775 calories. This base of calories would help to ensure that he consumed the calories he needed to add some much-needed meat to his bony frame.

The three of us watched the Republican debate. My parents hung in until 9:00 P.M. It ended at 10:00 P.M., so this was a late night for me. When they were getting ready for bed, Dad gave himself his nighttime meds. Mom had had a bad cough during the evening and while we played cards. Before she went to bed, I gave her a breathing treatment. Thank goodness that Dad’s prescription provided us with more saline and albuterol than one person could use.

February 26. I was up early and worked until Dad came into the office. Mom had not seemed well yesterday, and he was worried about her. While we were talking about her, she walked into the kitchen all perky, looking like she was ready to take on the world. She was like a walking testimonial for the benefits of a good night’s sleep. Although I had worked for a bit while my parents were still sleeping, I had actually taken the day off from work. We had a busy day planned, and Mom was ready to get started.

sickroomCross2Right after breakfast, we hit the chores like field hands. I quickly deflated the inflatable bed, and at 8:15 A.M., a guy from American HomePatient arrived and picked up the hospital bed. Unfortunately, he did not take the mattress, so I moved it to a back room in the house. Evidently, they can’t reuse mattresses and they won’t pick up anything that they can’t give to another patient. We were hopeful that we could find someone who would take a mattress off our hands.

Now that the master bedroom was bed-free, we cleaned, vacuumed, and shampooed the carpeting. Once again, I said a silent thank you to my husband for purchasing the floor mats to cover the bedroom floor. I’m positive that the carpeting would have been ruined otherwise.

While we were waiting for the carpeting to dry, Dad and I made another trip to Wal-Mart. After lunch, the three of us decided to take advantage of some free time, and we napped for about an hour. After we woke up, we did a bit more cleaning before the Ashley Furniture truck arrived at 4:00 P.M. After they assembled the bed, they were gone in a flash. We then spent 45 minutes struggling to put the mattresses inside of the mattress covers. We eventually triumphed, but the experience was aggravating, and I’ll never buy one of these beds for myself. We were finally finished manhandling the mattresses at 5:15 P.M., and I was good and ready for happy hour.

During the day, Dad drank all but about 2 oz of the Nepro/Ensure mix, and he gave himself his meds.

sickroomCross3After making the bed, Mom rearranged some of the medical accessories in the bedroom so that it looked more like a bedroom and less like a hospital room. Among other things, the baby monitor was removed from their room, which was a huge milestone for me. For the past 151 days, I had barely slept while I monitored Dad’s sleep and nighttime emergencies and needs. With the monitor gone, I felt like I was experiencing some separation anxiety.

February 27. After a day of physical activity, we all slept well, and we all slept for at least seven hours. The morning was uneventful and smooth, but I forgot to weigh Dad before he and Mom left home for the dialysis center.

During dialysis, Dad had 1,600 ml of fluid removed, but he probably should have had more removed. It was ironic that for so many months I had been critical that the nurses were removing too much, yet now I had the opposite concern.

A couple of days ago, Dad said that he would drink Ensure for lunch and the Nepro throughout the day. Today he back-pedaled on our agreement and drank the Ensure but not the Nepro.

sickroomCross2Mom and I fixed up their bedroom and spent some time putting together some other rooms of the house. The entire house was looking more like a home and less like a hospital. Their bedroom had had the most significant transformation, and only a set of shelves with some medical supplies gave any indication of how the room had been used for the last 21 weeks.

Stan arrived shortly after Mom and Dad returned from dialysis. Dad took a nap after lunch and then he and Stan started up the grill for dinner.

With all of the transformational activities during the past few days, it seemed like we needed a family photo to make the milestone. Happily, everyone was receptive to the idea.

Dad won at Oh Hell. I was able to get 1,400 calories in him today, so I felt like a winner too.


More milestones on the road to recovery

milestoneCross2February 15, 2016. Around 1:00 A.M., the sound of the Yankauer pump woke me, and then I heard Mom and Dad talking, so I got out of bed and went downstairs to their room to see if they needed any assistance. The tube feed bag wasn’t empty, but it was off, which initially annoyed me. Then I noticed that Dad’s congestion sounded bad, so I told him that I wanted him to have another breathing treatment. While I was getting the nebulizer ready, Dad complained about the Kangaroo feeding pump and how it was preventing Mom from getting her much-needed sleep, which also annoyed me. He resisted drinking the Nepro during the day and now he was coming up with reasons to not consume it at night. They had insisted that they could take care of themselves, but Dad seemed to be coming up with excuses to ignore the doctor’s instructions. After Dad finished the four-minute breathing treatment, I restarted the Kangaroo pump and returned to my bedroom.

When I got up at 6:00 A.M., I found Mom struggling with the tubing that connected the G-tube to the tube feed. Dad needed to get out of bed to use the bathroom, and Mom was having a difficult time getting him unhooked. Dad waited patiently as I helped Mom to set him free.

milestoneCross1While Dad was brushing his teeth, he vomited some mucus and Nepro. My first thought was that he might be accumulating fluid in his lungs. I grabbed the oximeter and saw that his oxygen saturation was down to 96%. In the past, there were times when I would have been thankful for 96% oxygen saturation, but not since he had been red capped. From the time that he was red-capped and then decannulated, his oxygen numbers had hovered between 99-100%.

I gave him another breathing treatment at 7:20 A.M., but it didn’t seem to help him much. We had a doctor’s appointment today with Dr. Sarla Patil, Dad’s PCP. She had wanted a consult appointment with us to catch up on everything that had happened to him since May 6, 2015. After waiting 45 minutes to see her at his appointment on February 4, Dad cut that visit short because he was eager to get his first haircut after coming home.

We left home for Dr. Patil’s office at 10:15 A.M. The drive to her office might have taken us 15 minutes, and we finally saw the good doctor 11:15 A.M. She’s not part of the Scott & White network, but she had been given access to Dad’s medical records and had reviewed them prior to our visit. She spent an hour with us, going over all of the details of his ordeal. She, like many others, was amazed that he had survived. I wished that Dad could have appreciated how lucky he was and how fragile his condition was. He just seemed to take it all for granted.

We had taken two cars to the doctor’s office. On my way home, I stopped by the pharmacy to pick up a refilled prescription and some Tussin for Dad’s congestion. Sue, our friend and nephrology nurse practitioner, had advised me to buy only Tussin. It has only one active ingredient (guaifenesin), and would not adversely interact with his other medications.

milestoneCross3When Dad, Mom, and Michell returned home, we all ate lunch. Dad agreed to drink some Nepro at lunch with his ham sandwich. Dad had time for a short nap before his swallow therapy session with Kristen. During this session, she had Dad eat some potato chips and two types of cookies. From what I could tell, he handled them pretty well. Bit by bit (or bite by bite), he was being cleared to eat a normal diet.

Shortly after Kristen left at 3:00 P.M., Dad took another short nap, waking up at 4:00 P.M. During happy hour, he drank some ginger ale. For dinner, Mom prepared one of Dad’s favorite meals—salmon and green beans, followed by pineapple sherbet.

After dinner, we played a spirited game of Oh Hell, and Michell won. By 8:00 P.M., the four of us were heading towards my parents’ bedroom. I set up the nebulizer and administered another breathing treatment. When Mom administered Dad’s meds, I had her also add some Tussin in Dad’s G-tube. Michell assisted Mom in setting up the Kangaroo pump. The tubing had to be threaded in a specific path through the pump, and the daily setup process still confounded Mom. By 8:30 P.M., Dad was drifting off to sleep, and Michell and I were heading to our respective rooms.

February 16. Dad was still congested today, but regardless of how he felt, today was a dialysis day, which meant that he, Mom, and Michell were up at 4:00 A.M. Dad was dressed by 4:30 A.M., and I stopped work for a few minutes to give him a breathing treatment. Once again, the HOP bus arrived at 5:45 A.M., 15 minutes early. Dad had gained more than five pounds over the weekend and had 2,600 ml of fluid removed during dialysis. He and Michell arrived home at 11:45 A.M., and I was able to take a break from work at 12:30 P.M. to join them for lunch. I was able to get Dad to drink a glass of Nepro with his ham and cheese sandwich. He needed to consume three cans of Nepro per day, so any amount that I could get him to consume during the day was that much less that he needed to consume at night.

milestoneCross2About an hour after lunch, Dad was ready for a nap. With some oversight from Michell, Mom administered Dad’s midday meds. After resting for less than 30 minutes, Dad woke from his nap at 2:15 P.M., but wanted to lie down again at 4:00 P.M. Less than an hour later, he was up and ready for happy hour. In keeping with his drinks of thickened liquids, he enjoyed a nectar drink.

Mom made a pizza for dinner, and Dad downed two slices and chased them with some sherbet. We started playing cards at 7:25 P.M., and by 8:15 P.M., Mom had won our nightly game of Oh Hell. After Mom finished administering Dad’s meds and prepared the Kangaroo pump and tube feed, Michell and I left for our respective bedrooms.

February 17. Today was a milestone day. Michell would be leaving us, and Dad would attend his plan of care meeting at the dialysis center. I started work at 3:45 A.M. and about an hour later, I heard Dad calling me. He wanted to get up. I had turned off his tube feed at 3:00 A.M. when the alarm on the Kangaroo pump indicated that the tube feed bag was empty. He had consumed this three cans of Nepro during the past 24 hours, so I turned off the pump and disconnected him from it.

milestoneCross1I spotted him as he transferred from the bed to the wheelchair. He quickly wheeled himself to the kitchen and read the newspaper while he waited for Mom to get up. After he ate breakfast, I took a short break to apply shower shields to his dialysis port so that Michell could help him shower. When he was finished showering and shaving, Mom administered his morning meds.

I had a morning of meetings to attend, but I stopped for a few minutes at 9:45 A.M. to chat with Brenda when she arrived for Dad’s physical therapy session. She would have one more session with Dad before Kathleen, her supervisor, assessed Dad’s progress. Her assessment would determine whether Dad could receive additional physical therapy, and if he could, she would set his goals.

At 10:30 A.M. we said teary goodbyes as Michell left us for the last time. She had joined One on One Personal Homecare after Dad returned home, and Dad had been her first patient with the company. She had been invested in his care and very protective of him. When she left, I gave her a card from Stan and me that contained a $300 gift card. Fortunately, she did not open the envelope until she was gone because I don’t think that my parents would have been thrilled that I gave her the extra money. On her way home, she stopped by a fast-food restaurant and opened the card and called me and tearfully thanked me. The house seemed unusually quiet after she left. I don’t think that my parents and I had been alone in the house since last May. Once again, I felt like I had lost another safety net. I didn’t know if Mom yet realized how much support we received from the aides, but within a few minutes after Michell left, Mom called me when Dad started vomiting a lot of mucus.

milestoneCross3I worked a little longer, and then we ate lunch. During lunch, Mom and I tried to convince Dad to drink his three cans of Nepro during the day. If he would do that, we could discontinue the tube feed. The idea received only a lukewarm reception from him. He was all in favor of discontinuing the Nepro during the night, but he didn’t want to drink the three 8-oz cans of it during the day.

After lunch, we headed to the dialysis center for Dad’s second plan of care meeting. In October, I had attended the first meeting by myself, so this would be the first meeting for Mom and Dad. After he walked down a very long hallway with his walker, the group of caregivers all but gave him a standing ovation. The dietitians, nurses, case workers, and doctor in attendance were very impressed with his current condition and that he had made the long walk. Everyone also validated the things that we had been doing to care for Dad, which relieved me. We had a great session. Last month, Dad had resisted the idea of surgery to remove his dialysis port. During this meeting, I think that we convinced him to have the fistula surgery, and he agreed that the graft would be his best option. In addition to reduced risk of infection, the fistula would enable him to shower without shower shields. Most dialysis patients have fistula surgery for dialysis, which enables the dialysis center personnel to use his arm for dialysis. The dialysis ports that Dad had were considered temporary. Dr. Issac said that he would give us a referral for the surgeon who performs the surgery. Because Dad had been so weak, Dr. Issac had not wanted Dad to have the surgery before now. However, he now felt that Dad was almost strong enough to withstand more surgery.

milestoneCross1Instead of playing cards after dinner, we spent quite a bit of time going over meds, how to dispense them, and how to set up the tube feed and Kangaroo pump. While we were at it, I also figured out how to turn off that damn alarm on the Kangaroo pump. The pitch of the alarm was too high for Dad to hear, but Mom and I heard it loud and clear. Now she and I would sleep better. Before I went up to my room, I showed Dad how to disconnect his G-tube from the Kangaroo pump tubing. I had hoped that showing Dad how to free himself from the pump wasn’t a mistake. I crossed my fingers that he would not try to get up and out of bed without assistance. He had been terrible about not wanting to bother the aides. I feared that he would not want to bother Mom.

Getting better doesn’t feel like progress

Baby steps toward normalcy

redcap21_smallFebruary 4, 2016. At 2:00 A.M., Dad was awake and was making noises that Dianne couldn’t understand. It took her only a couple of moments to realize that his red cap was missing, which prevented him from being able to talk. Dianne spent a couple of minutes looking for it and found it on the floor. He must have blown it off when he coughed during the night. We had a spare red cap in a saline container, which Dianne placed on Dad’s trach. She then placed the soiled red cap in the saline and refilled the tube-feed bag with Nepro, and then she and Dad went back to sleep for a couple of hours.

When Dad woke up at 4:00 A.M., the tube-feed bag was not empty, but Dad could not remain in bed on a dialysis day. By 5:45 A.M., Dad and Dianne were on the HOP bus and on their way to dialysis. While he was there, 1500 ml of fluid was removed. When Dad left this morning, his ankles seemed a tad swollen, so I hoped 1500 ml of fluid was adequate.

normalcyCross1Dad and Dianne were back home by 11:30 A.M. I had been in meetings all morning and hadn’t seen them leave or return. I was able to break from working at noon, and the four of us had lunch together. To accommodate an appointment with his primary care physician (PCP) and a haircut this afternoon, Dad wanted to take his nap right after lunch.

The four of us arrived at his PCP’s clinic at 2:45 P.M., and then sat for 15 minutes in the waiting room and an additional 30 minutes in the examination room before Dr. Sarla Patil arrived. Dr. Patil had become Dad’s PCP a few months before he entered the hospital, and Dad had seen her a couple of times before his surgery in May 2015. During Dad’s hospitalization, she had not received as much as an email from the physicians at Scott & White, which seemed like a strange way of maintaining doctor/patient relationships. We had made this appointment to have Dad’s staples removed from his head wound, but Dr. Patil wanted to talk about the events of the past nine months. However, Dad was determined to get a haircut today, and he cut the conversation very short. On the way out, we made an appointment to see her for a consultation, which would enable us to have a longer conversation.

We had arrived in separate cars, so when we left, I drove to HEB to pick up some groceries and then went home so that I could go back to work. Mom, Dianne, and the newly-trimmed Dad returned home about 30 minutes after me, and they were ready for happy hour.

normalcyCross3We had planned to tell Dianne that this would be her last shift with us, but after dinner and our game of cards (in which Dad beat me by 1 point), she dropped Dad’s hearing aids behind his dresser. The dresser was tall and heavy as lead, so retrieving them would be challenging and I didn’t plan to attempt to retrieve them until tomorrow. When Dianne was out of the room, Dad told me that he was concerned that she might think that the mishap with the hearing aids had something to do with the end of her service and asked me to wait and tell her tomorrow.

By 8:00 P.M., Dad was in bed and falling asleep.

February 5. I had a busy day at work, which started just before 4:00 A.M. Mom stopped by to see me just before 6:00 A.M. to say hello and to refill my coffee. I asked her how Dad was today and was surprised to learn that he and Dianne were still sleeping. About 30 minutes later, I heard them talking, and then at 7:45 A.M. I heard the sound of Dad’s wheelchair passing by the office en route to the kitchen. After having a cup of hot water, which he referred to as weak coffee, he ate his usual Cream of Wheat and figs with peaches on the side. After so many months without eating, Dad’s taste for coffee had not yet returned. I tried to get him to try drinking it with cream, but he would drink only black coffee or water.

normalcyCross2At 9:00 A.M., Dad told Dianne that he didn’t feel well, and wheeled himself back to the bedroom and napped until 10:00 A.M., waking once to use the suction wand. After waking, with some assistance from Dianne, Dad got into Mom’s Chrysler LeBaron so that he could identify a sound that she had been hearing. I can only imagine how difficult it was for him to get out of that car. Like many sports cars, the LeBaron is low to the ground, which makes exiting it difficult.

Mom, Dad, and Dianne ate lunch at 12:30 P.M., but I was unable to break away from work to join them. I was able to stop work for a few minutes at 1:30 P.M. when Janet stopped by for Dad’s occupational therapy session. As soon as Janet left, I followed Mom and Dad in Dad’s car to a repair shop, where they left it. When we returned home, Mom and I used a collection of patches to cover Dad’s dialysis ports so that he could take a shower without exposing his dialysis catheter to moisture. We taped him up so well that I was concerned that the patches wouldn’t come off without pulling on the catheter. I’d be glad when he could have the catheter removed. The catheter provided an infection entrance ramp to his heart. When he was finished with his shower, Dianne replaced Dad’s g-tube stoma dressing and trimmed his toenails.

normalcyCross4While Dad got a pedicure and then took a nap, I worked, but he and I joined Mom and Dianne at 5:00 P.M. for happy hour. After an early dinner, we played Oh Hell, and Mom won. By 7:30 P.M., Dad was in bed and was waiting for Mom and me to administer his nighttime meds and set up the tube feed with two cans of Nepro. When Dad returned from the hospital this past September, I had insulated Mom from all of the caregiving activities. When my parents decided that they could get by without the aides, my mother had agreed to assume some of the caregiving activities. She now seemed to be a bit overwhelmed by the level of care that Dad still required.

February 6. At 2:30 A.M., the alarm on the Kangaroo pump woke Dianne, but the high-pitched alarm didn’t phase Dad, and he continued to sleep soundly. Although I was grateful for my dog-like hearing, there were times when I wished that I could sleep through these alarms. Dianne added the third can of Nepro to the tube-feed bag and returned to bed to sleep for 90 minutes.

I had to drive south to Houston today and then to north Conroe to celebrate a friend’s 60th birthday. I had forgotten to set my alarm but was awakened by the sound of Dad and Dianne talking. Dad got dressed and wheeled himself to the kitchen for his Cream of Wheat breakfast. By 6:00 A.M., Dianne and Dad were on the HOP bus. When they pulled out of the driveway, I ate breakfast and then left for Houston.

normalcyCross1A couple of hours later, I stopped at the Buc-ee’s near Waller and met Stan, who was en route to Temple. I arrived at my home in Houston at 10:00 A.M. I dropped off some clothes, gathered some others, and changed for the party in Conroe. The seasons were changing, and periodically I needed to swap out portions of my wardrobe.

Back in Temple, Dad had required the removal of only 1200 ml of fluid during dialysis, which is a minimal amount. Not only did Dad finish early but he and Dianne were also able to board a HOP bus as soon as they exited the clinic, enabling them to return home at 11:02 A.M.—an all-time record. On most dialysis days, Dad returned home just in time for lunch. Because they were home so early today, they decided to sit in the sunroom to rest and visit. Dad had barely sat down when Stan arrived. After visiting for a few minutes, Mom prepared them grilled cheese sandwiches for lunch.

Dad needed a nap, but because Stan was here, he was adamant that he wanted to wake up by 2:30 P.M. Shortly after he woke up, he and Stan drove to Lowe’s. Using his walker, Dad walked from the parking lot to the front door of the store where he was greeted by Lowe’s employees who showed him to a motorized wheelchair. I would have thought that Dad would have objected to using it, but he took to it like a duck to water. They guys purchased their supplies, and then Dad used his walker to return to the car.

pamCakeI had enjoyed seeing some of my dearest friends at the party in Conroe, but I had to leave the party at 3:15 P.M. and drive to Temple. I arrived at my parents’ home just in time for dinner. Mom fixed a nice dinner of roast beef and mashed potatoes, and we enjoyed King Cake for dessert.

After dinner, the five of us played Oh Hell, and I won by one point! At 8:00 P.M., Dad wheeled himself to the bedroom to start his nighttime routine. As Mom finished her new nighttime duties, Dad was drifting off to sleep at 9:00 P.M.

February 7. Dad had another great night’s sleep. Dianne woke up shortly before 3:00 A.M. to add a can of Nepro to the tube feed bag. Dad woke up at 6:00 A.M. and wanted to get up, but Dianne told him that he had to stay in bed until the Nepro was gone. She told him to sleep for another 30 minutes.  When Dad woke up again at 6:40 A.M., the Nepro was gone, and he was eager to get up. Dianne unplugged him from the pump and helped him out of bed. He then got dressed and wheeled himself to the kitchen for his daily cup of hot water.

normalcyCross4The five of us ate breakfast together. For the past 58 years, Mom has baked a special bread for Christmas. Because he could not swallow at Christmastime, Dad could not participate in our traditional breakfast. Believing that Dad would be able to eat again someday, Mom had frozen a loaf of the bread that she had baked this past Christmas, and today we toasted it for breakfast. To mimic our traditional breakfast, she served it with eggs and bacon, making the meal seem like a second Christmas breakfast.

While Mom and I were getting ready for church, Stan and Dad played a couple of games of cribbage. While we were gone, Dad and Stan went outside for a walk around the backyard. It was cool and windy, so they didn’t stay outside for more than a few minutes.

When Mom and I returned from church, the five of us ate lunch. After lunch, Stan and I moved the twin bed that Mom had been using into a guest room, swapping it for the inflatable bed that had been there. Starting tonight, Dianne would sleep in the guest room and Mom would sleep in the master bedroom. I feared that, like the aides, Mom would not enjoy too many restful nights, but we had to start transitioning to our new normal.

Shortly after Stan and I rearranged furniture, he had to return to Houston. Shortly after he left, Mom, Dad, and I drove to Bob Mills, a local furniture store, to look at beds. Mom had donated their king-size bed to charity a couple of days before Dad was discharged from the hospital. Now that the aide service would be ending soon, we planned to return the hospital bed to American HomePatient, and my parents needed a new bed. Because Dad was not supposed to lie down flat on the bed, my parents wanted a split king-size bed so that he could elevate his head. We looked at few beds and made notes of prices for more comparative shopping.

normalcyCross2We returned home shortly before happy hour, and after dinner, we watched the Super Bowl game while playing Oh Hell. At 7:30 P.M., Mom started working with Dad on his bedtime routine. She was a bit nervous, so I was glad that we started now while the aides were still here. I couldn’t blame her for being nervous; I was a nervous wreck for the first two weeks that Dad was home. Heck, I was still nervous. I was ready for bed at 8:30 P.M., but Mom and Dianne returned to the sunroom to watch the game, but neither of them could stay awake until the end. My parents are fans of the Broncos, who were winning when Mom and Dianne turned off the television.

They said that this anniversary wouldn’t happen

January 30, 2016.  Because it was Saturday, Michell and Dad were awake at 4:00 A.M., and within the next 50 minutes Dad had had his usual breakfast of Cream of Wheat, had dressed himself, and he was ready and waiting for the HOP bus to take them to dialysis. During his dialysis session, 1200 ml fluid was removed, which was the minimum amount that they could remove.

In Houston, I slept in until the sinfully late hour of 7:00 A.M.  I took care of a few errands and was on the road to Temple by 11:30 A.M. Shortly after I drove from I610 to US290, Dad and Michell arrived back home. They enjoyed grilled cheese sandwiches, and at 1:30 P.M., Dad was ready to lie down for a nap.

anniversaryCross3Michell learned yesterday that her mother was in the hospital and would most likely require surgery to remove her gallbladder. She immediately contacted Becky, the owner of One On One Personal Home Care Services to notify her that she wanted to leave Saturday (today), three days before the end of her shift. Had I been in her shoes, I would have left in a heartbeat, but the selfish side of me hoped that her mother would recover quickly and not require post-op care from Michell. Becky called my mother and told her that Joanie would be replacing Michell. Joanie was traveling from Palestine, Texas, about a 2-1/2 hour drive from my parents’ home. Michell said that she would stay until Joanie arrived so that she could orient her. I was crossing my fingers that we’d see Michell again.

Because we anticipated a late arrival from Joanie, Michell joined us for dinner. Joanie was an experienced aide, and Michell was able to complete the orientation within 30 minutes and was driving away by 8:00 P.M. By the time that Joanie and I got Dad to bed, it was after 9:00 P.M. Dad had made it through the day without any vomiting. I was cautiously optimistic that he was getting better. By the time that I got upstairs and finished my call with Stan, it was 10:00 P.M.

January 31. At 4:30 A.M., I was awakened by the nerve-grating alarm on the Kangaroo pump. Joanie had added more Nepro to the tube feed bag, but the pump couldn’t move the fluid. Every so often, an air gap appeared in the line and we had to prime the pump, which was the case now. I showed Joanie how to prime it, but I didn’t expect her to encounter the problem again. I returned to bed and slept fitfully for another hour until I heard Dad waking up.

With a little assistance from Joanie, Dad got up and dressed, and wheeled himself into the kitchen to visit with Mom. The four of us ate eggs and homemade English muffins for breakfast. When we finished breakfast, Dad wheeled himself back to his room, and I gave him his morning meds and administered his trach care. Mom and I left for church at 10:20 A.M., and Dad took a nap while we were gone.

blueberryNewtonDad was awake and feeling well when we returned from church at 1:00 P.M., and he ate a couple of slices of turkey and two Blueberry Newtons for lunch. I don’t know what had possessed Mom to buy the Blueberry Netwons; they’re not nearly as good as the original Fig Newtons. I love blueberries, but these cookies had a strong taste of artificial flavoring.

After lunch, Dad used the walker to walk around the yard with Joanie. Within 15 minutes he came back indoors, saying that he felt nauseous, and then started vomiting mucus. I found it interesting that within two hours of eating, he would vomit mucus and not his lunch.

anniversaryCross2He started feeling better and then went outside and sat on the patio for about 30 minutes. My parents’ 67th wedding anniversary was in a couple of days and I needed to go to the store to get them a card. There are no special gifts for 67 years, but this anniversary seemed especially special. Fewer than 150 days ago, we were told that this anniversary would never come. Hallmark didn’t have any “thank goodness you survived” anniversary cards. Walgreens was the perfect place to buy a greeting card. Not only could you buy a card, but you could also pick up a bottle of wine. When I left Walgreens with my card and wine, I stopped by the Scott & White Pharmacy to pick up a couple of prescription refills for Dad.

A dear friend of mine was experiencing some angst with the medical industry. Her father had had some surgery during the past summer, and at least one of the medical professionals had made some bonehead mistakes that had impacted her father’s recovery. We chatted on the phone and compared war stories. We could write a book.

anniversaryCross2To get some carbs and protein into Dad, I prepared a salmon and pasta salad for dinner. While Dad had been in the hospital, keeping ourselves nourished was a challenge. I often prepared multiple casseroles on the weekends and froze them. Consequently, I could now fix a mean pasta casserole with lots of vegetables and protein. I also loved casseroles because they provided at least one night of leftovers.

Instead of teaching Joanie how to play Oh Hell, I thought that it would be a nice change to play Yahtzee, and Mom won. By 7:30 P.M., we were starting Dad’s nighttime routine. He had reached the point where he could practically guide Joanie through the routine. By 8:00 P.M., he was falling asleep.

February 1. Today marked the 125th day since Dad’s discharge from the Scott & White Continuing Care Hospital. When I woke up at my usual time, I thought that I heard some unusual sounds coming from Dad’s room. I lived in fear that something dreadful would happen to him during the night, a fear that had started during his hospitalization. I got out of bed and went downstairs to Dad’s room to check on him. I was relieved to see that he was just sleeping, and I went back upstairs to dress and get ready to work.

By 5:00 A.M., Dad and Joanie were awake. With little assistance from Joanie, Dad got dressed and then wheeled himself into the kitchen for his breakfast of Cream of Wheat and figs.

anniversaryCross3I spent most of the morning working with the office door closed. Shortly before 10:00 A.M., I heard Mom and Dad talking with someone who didn’t sound like Joanie, but the voice sounded somewhat familiar. When I opened the door, I heard the unmistakable voice of Dianne. Joanie was scheduled to return to a client’s home tomorrow and needed to return home today. Evidently, Becky had texted Dianne and had asked her if she would return a couple of days early and stay with us for nine days instead of seven. Dianne sometimes grated on my nerves, but I was glad (practically thrilled) to see her again. I hadn’t realized how much she simplified my life.

About an hour later, Brenda arrived for Dad’s physical therapy session, and she really put him through the paces. Dad’s goal for this 30-day period was to walk with a cane, and she was doling out the balance exercises in earnest. Usually, she wanted us to work with Dad on some of the exercises between sessions, but today she told us that he should only do these exercises when she was present. Before she left, she had him lie on the bed and do some of his bed exercises to improve his core muscles.

anniversaryCross2When Brenda left at noon, I took a lunch break, and the four of us enjoyed some leftover meatloaf. Shortly after lunch, Dad was ready for a little nap, which is all he got. He had been sleeping for about 20 minutes when the doorbell rang. We all assumed that it was Kristen, but it was just a delivery of medical supplies. Dad dozed for another 20 minutes before Kristen arrived for his swallow therapy session. Once again, she restated that Dad must guard his airway and that he should exercise between sessions. I was pretty certain that the therapists felt like they were whistling in the wind when they provided guidance about behavior and exercise. Fortunately, Dad improved in spite of himself. If he had exercised during the time that it took to come up with the excuses for not exercising, he would have been the Richard Simmons of home care.

After Kristen left, Dad and Dianne walked around outside, and Mom and I ran a couple of errands.

During happy hour, we watched the news. After dinner, we played Oh Hell, and I won. The Iowa caucus was tonight, and when I went to bed, Cruz, Trump, Rubio, and Carson (in that order) were leading the pack.

anniversaryCross1February 2.  It was dialysis day, so we were all up early. Because it was their anniversary, Mom gave Dad some extra figs with his Cream of Wheat. Dad and Dianne were ready and on the HOP bus by 5:45 A.M. During dialysis, 1200 ml of fluid was removed, and he was finished with dialysis by 10:30 A.M. Unfortunately, the bus didn’t pick him up from the dialysis center until 12:30 P.M. He and Dianne were pretty steamed about the delay.

We had lunch around 1:00 P.M. and I got on Dad’s case twice for not swallowing correctly. He got mad at me for yelling at him. I just could not make him understand how important it was for him to concentrate on swallowing. Kristen had also been adamant that Dad not talk while eating, but it seemed that he never stopped talking. I was usually wound up pretty tight during meals.

At 2:00 P.M. he took a nap and slept for a couple of hours. He had wanted to go outside, but somehow he and Dianne never made it outside. Dianne had talked about having him work on his bed exercises, but that didn’t happen either.

anniversaryCross1In addition to watching the news during happy hour, we acknowledged my parents’ 67th wedding anniversary. Mom and I had been able to purchase cards, but Dad’s road trips were still very limited. Dad loves salmon, and Mom fixed us a nice salmon and broccoli dinner for their anniversary.

After dinner, we played Oh Hell and Dad won—our anniversary gift to him. By 7:30 P.M., the festivities were over, and we started Dad’s nighttime routine. By 8:15 P.M., he was asleep.

February 3. Because Dad had complained that the Nepro made him feel too full to eat during the day, Dianne and I decided to administer his prescribed three cans during the night. The tube-feed bag held only two cans of Nepro, which meant that Dianne would need to refill it sometime around 2:00 A.M. On most nights, like last night, she was successful in keeping the tube-feed bag full. For the most part, Dad liked this arrangement.

anniversaryCross2We had an early appointment with Dr. Pfanner and the tube feed team (Julie and Talitha) and had made arrangements with the HOP to be picked up at 7:15 A.M. Dianne and Dad rode in the bus, and Mom and I followed in my car. As we were walking into the clinic lobby, Dad felt sick and vomited into a trash receptacle. Thank goodness we were on our way to see the gastroenterologist. I hoped that he could shed some light on the cause of Dad’s vomiting.

Talitha and Julie both had medical students in tow, so the small exam room was very crowded. During this visit, Dad would have his PEG changed. To ensure that you don’t encounter problems with it deflating and falling out, a PEG should be changed every couple of months. Talitha and Tiffany, her student, changed out Dad’s PEG. Dr. Pfanner was extremely pleased with Dad’s progress and said that by all rights, he should be dead and that 90% of the cases like Dad’s don’t end well. I hoped that Dad would hear what the doctor was saying and understand just how serious his condition was and how tenuous his situation was. Instead, all that he heard was how well he was doing and how well he looked. Unfortunately, no one could offer any insight into the intermittent vomiting.

The doctor wanted to see us again in another month, and we tried to make an appointment for March 2nd on our way out, but that day was not available. I would have to call them later when I had Dad’s calendar handy.

anniversaryCross3We got back home around 9:45 A.M. Mondays were usually busy, and today was no exception. We ate an early lunch and Dad helped himself to some leftover salmon and an English muffin.

Brenda arrived shortly after noon for Dad’s physical therapy session, and she gave him a real workout. He was able to rest for an hour before Kristen arrived for Dad’s swallow therapy session.

As she had told us during her last visit, she had Dad eat one of Mom’s pumpkin cookies with some water, which was the first time in almost a year that he had eaten a solid with a thin liquid. The test seemed to go well, and Kristen reminded him about the importance of protecting his airway. As she was leaving, Kristen told me that she had four more sessions with Dad, so February 17 would be her last day. To accommodate some other plans that I had for that day, I asked if she could make it the 19th, and she agreed.

Shortly after 4:00 P.M., I changed out Dad’s trach for what I hoped would be the last time. During Dad’s appointment with the pulmonologist on January 4, the doctor had contemplated removing Dad’s trach, so I was hopefully optimistic that he would be decannulated during his upcoming appointment. Today, the removed trach looked much better than it did the last time, and Dad’s stoma was much smaller. Even Dianne commented about the smaller diameter of the stoma. Dad didn’t cough very much after the changout, which was a nice change. The smaller trach tube enabled Dad to more easily handle his secretions, which might have contributed to the improved appearance of the trach.

After happy hour, we ate leftover casserole for dinner followed by Mom’s fabulous homemade lemon meringue pie.

By 7:30 P.M., Dad had walloped us at Oh Hell and was on his way to bed.

The second fall, and this time without a safety net!

January 26, 2016. Because it was Tuesday and a dialysis day, everyone in the house was awake and up by 4:00 A.M. Dad and Dianne zipped through their morning routine, and they were ready and waiting for the HOP bus when it arrived at 5:45 A.M. Dad’s dialysis session started at 6:00 A.M. and was finished by 10:15 A.M. When he checked in, he weighed 66.6 kg, and when he left, his weight was down to 65.4 kg, so they removed only a minimal amount of fluid.

netCross1Unfortunately, finishing dialysis early doesn’t necessarily mean that you can leave early. Dianne and Dad had a bit of a wait for a bus that would take them back home. When they arrived home at 11:30 A.M., Dad wasn’t feeling very well and wanted to take a nap. We had a quick lunch so that he could start his nap at 12:15 P.M.

At 1:20 P.M., he started to get out of bed because he needed to vomit. We quickly unhooked him from the tube feed so that we could help him get out of the bed. He vomited a couple of times, but only mucus. He still wasn’t feeling too perky and wanted to lie down for a few more minutes. Because of his nausea, we did not restart the tube feed.

netCross2We had been anticipating the arrival of a nurse to reevaluate Dad for another 60 days of skilled nursing. A nurse that we had not met before arrived at 2:00 P.M. for the recertification visit. Instead of being approved for the additional time, she said that Dad was too healthy and that she would not recommend further skilled nursing support. Instead, we would be permitted three calls to the Home Care office during the next 60 days. I suddenly felt like I was dancing on a tightrope and my safety net had just been removed.

After the nurse left, Dad got up for a few minutes to have some shaved ice, but soon wanted to lie down again. He got back up again a few minutes before 5:00 P.M. to join us in the sunroom for happy hour. After chatting for a few minutes, he wheeled himself to the hall closet. Moments later, we heard a loud crash, and Dad was on the floor and on his back. We all ran to him to see what had happened. Apparently, while standing in front of the unlocked wheelchair, he got his feet tangled up in the small front wheels and lost his footing. Fortunately, his fall to the floor was somewhat akin to a bouncing pinball, so he didn’t fall straight to the floor. He did land on his head, however, and it was bleeding. After helping him back into his wheelchair, we gave him a cold compress for the goose egg that was quickly developing on the back of his head. The bleeding seemed to stop, and he wanted to return to the sunroom to watch the news.

IMG_1456When the news was over, Mom noticed that the bleeding had restarted. After careful examination, it seemed that additional swelling had caused little cuts to open and bleed. I used one of my three lifeline calls to Leo, the after-hours nurse. He encouraged us to take Dad to the emergency room to ensure that he was OK. I had often said that I would never take Dad back to the Scott & White emergency room unless he was bleeding profusely, so I guess that this situation qualified as ER-worthy.

Mom, Dad, and I left home for the emergency room at 6:30 P.M. After three hours, a CT scan, four staples in his head, and a tetanus shot, we were on the way back home. The arrival home was pretty exciting when he practically fell on the garage floor as he transferred out of the car.

Dianne ate dinner while we were gone, but when we got home at 10:00 P.M., we ate beans and franks and pumpkin cookies. Dad’s dinner didn’t stay with him very long. Within a few minutes, he had vomited his dinner and cookies. I wished that someone could shed some light as to why Dad kept being nauseated.

We finally got him to bed at 10:30 P.M. We decided to restart the tube feed but restricted the flow to 25 ml/hour. Shortly before 11:00 P.M., the lights were out downstairs, and I was heading to bed.

netCross3January 27.  Dad had a restless night’s sleep, but he and Dianne slept in until almost 7:00 A.M. I didn’t have any early morning meetings and was able to sleep in until 4:45 A.M. It wasn’t close to a full night’s sleep, but after our late night at the ER, it was better than getting up at my usual 3:30 A.M.

When Brenda stopped in for Dad’s physical therapy session, she was relieved to learn that Dad’s fall wasn’t caused by balance issues and that it was no worse than it was. Dad said that he felt fine and didn’t have any pain, so she concentrated on exercises that would improve his balance.

Shortly after Michell arrived at 10:30 A.M., I emailed Becky, the owner of One On One Personal Home Care Services, and informed her that we would be ending our services with her company on February 17. I also asked her to let us tell Michell. We had become fond of her and we wanted her to hear the news from us.

netCross2While Dad was in the hospital, the lock on our front door had quit working. With a little assistance from Michell, Dad switched the front-door lock with one that was never used. After six months of not having access to the house from the front door when it was locked, it was nice to have it working again.

When Kristen arrived today for Dad’s swallow therapy session, we had a tea party of pumpkin cookies and tea. She wanted to see how Dad handled thin liquids and food. He did pretty well, and Kristen presented us with a lesson in anatomy. I still marvel at how any of us can swallow food without choking.

pushmepullyouIn response to an email message that I had sent to Dr. Pfanner’s office about Dad’s frequent vomiting, I received a phone call from Julie, Dr. Pfanner’s dietitian. She didn’t provide any insight as to why Dad kept vomiting, but she said that we should increase Dad’s fluid intake. She thought that he should drink at least a liter each day, which was in direct conflict with the guidance from the nephrologist’s dietitian, who said that he needed to restrict his fluid intake. Sometimes I felt like the pushmi-pullyu.

Shortly before happy hour, I changed Dad’s trach. I was a little alarmed at the sight of it. I couldn’t tell if it was coated with mucus and food or mucus and blood. I took a photo of the nasty mess and texted it to Kristen. Kristen responded right away and said that she thought that it looked more like blood than food. I hadn’t stopped to think about how shocking it might have been to receive such a yucky image on her phone. I quickly sent the photo in an email message to Svenja, the trach nurse at Scott & White, but I suspected that I wouldn’t hear back from her today.

netCross1We were able to enjoy dinner and a game of cards tonight without any interruptions from vomiting. Dad was on his game tonight and beat us at cards. By 7:30 P.M., we had finished our card game and were starting our nighttime routine.

January 28. Dad and Michell had a good night’s sleep and were up at 4:00 A.M. I had started work earlier than usual today so that I could head back to Houston for a couple of days. Fortunately, Dad and Michell were ready a bit earlier than usual, because the HOP bus pulled in our driveway at 5:30 A.M. to take them to dialysis. I appreciated the fact that they tried to ensure that Dad was not late to dialysis, but 5:30 A.M. seemed a bit early for a 7:00 A.M. appointment.

As I was packing up my computer at 11:45 A.M., Dad and Michell returned home. Because they had returned home when they did, the four of us were able to eat lunch together before I left at 12:30 P.M.  These drives to Houston were exhausting, and I usually battled drowsiness about 20 miles from home. Stan had told me that he had often stayed awake by eating M&Ms, so I starting chasing them with coffee somewhere around Brenham, Texas. As soon as I arrived home, I napped for about 30 minutes and then drove to my night class at Glassell School of Art.

netCross2While I was driving home to Houston today, Dad took a nap to recover from his dialysis session. After he woke up, he and Michell went to the garage with Mom to check out a problem that she was having with her car.

During happy hour, Dad had a Sprite, which is considered a thickened liquid, but within a few minutes, he was sick to his stomach again. He wanted to lie down and skip dinner. He had planned to watch a presidential debate with Mom, but he wasn’t feeling well enough to get out of bed to join her. Michell helped him to get ready for bed, and he was asleep by 8:00 P.M.

January 29. I had not been to my Houston office in many weeks, but one of the reasons why I had to come home this weekend was so that I could clean out my cubicle to prepare for an office move. After filling up the trash and recycling receptacles in my cube, I started swiping them from all of the surrounding cubicles. When I left for the day, my cube was ready for the move, and my car was full of personal items that would not fit within the new space.

netCross3Back in Temple, Dad was having a mixed day. Shortly after he woke up at 5:00 A.M., he started vomiting again. He rested a bit and took his time getting dressed. By 6:30 A.M., he was feeling up to eating his usual breakfast of Cream of Wheat and peaches. Michell had waited until after he ate breakfast to administer his morning meds and trach care. When she was finished with his morning routine, she resumed the tube feed at the slower 50 ml/hour rate.

Shortly before 10:00 A.M., Dad had about ½ cup of yogurt and then told Michell that he wanted to go back to bed. As they were discussing his early nap, they decided to play a game of cribbage instead. Dad had taught Michell how to play a few weeks earlier. She was no substitute for Stan, but I was glad that she was able to distract him from taking another nap.

Janet arrived just before 11:30 A.M. for Dad’s occupational therapy session. Regardless of how bad Dad felt, he always seemed to perk up somewhat during their verbal sparring. I was pretty sure that their banter also distracted him from the exercises.

netCross3After Janet left, Dad had a light lunch of ham and cheese and a cup of nectar. Michell was able to get him to practice some of his balance exercises at the sink, and then they walked outside for a few minutes. He then spent the remainder of the afternoon napping.

During happy hour, Dad had some shaved ice. Somehow, Dad had convinced Mom to prepare flounder and beets for him for dinner—a less-than-favorite combination for her. The thought of this missed meal made me want to reach for a Zofran. While Stan and I enjoyed an evening at TUTS watching The Bridges of Madison County, Dad, Michell, and Mom ate ice cream and played Oh Hell, and Mom won.


Improving at a snail’s pace with speed bumps

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

scargo_cross1Dad, Dianne, and Mom ate breakfast at 8:15 A.M., Dad having his usual Cream of Wheat with honey, and a pear. About 90 minutes later, he said that he didn’t feel well, and then started vomiting. Surprisingly, he vomited only mucus and not his breakfast. I was perplexed about what might have caused the vomiting. Fortunately, Stephanie, the nurse, had already called us and was scheduled to arrive within the hour.

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

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

IMG_1437When Janet left, I took a break from work to eat lunch. When I returned to my computer about an hour later, I was greeted by the blue screen of death. I called my employer’s help desk and ran through some diagnostic tests to determine if we could fix the problem, but the tech finally said that he would open an urgent issue. I was lucky. The now-dead computer was very new, and I still had my old laptop with me. The IT tech from the Houston office called me and said that he was sending me a loaner computer via FedEx, which meant that I wouldn’t need to drive 60 miles to our Austin office, which had been a concern. I spent the remainder of my workday using my old computer to work on a website. I was thankful that I had enabled daily backups of my computer.

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

scargo_cross2We were finished with our dinner of enchiladas and chocolate cake before 7:00 P.M. Dianne was getting better at Oh Hell and was tonight’s winner. We were finished with our card game by 7:30 P.M., and by 7:55 P.M. Dad was drifting off to sleep.

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

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

scargo_cross3Mom and I were still concerned about Dad’s dry weight and followed his bus to the dialysis center so that we could talk with his nurse about the amount of fluid they had been removing. We had spoken with Sue, our friend and nurse practitioner, only a week ago, but I still thought that they were removing too much. After speaking with the charge nurse, she said that they would remove only the minimal amount—1200 ml. Mom and I had been loaded for bear, and the encounter with the nurse was very anticlimactic.

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

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

scargo_cross2After lunch, Mom and I ran a couple of errands, and when we returned, Stan and Dad were playing cribbage. After beating Stan at a couple of games, Dad finally wanted to take a nap. He told Dianne that he wanted to get up by 5:00 P.M., a little less than two hours from now. She tried to wake him at 4:45 P.M. and then again 45 minutes later. She was finally able to rouse him at 5:50 P.M., but he stated that he didn’t feel right.  He joined us in the living room as we were ending our happy hour. Dianne prepared some shaved ice for him, and during the remainder of our happy hour, Dad talked a lot about his mother and her final days battling Guillan Barre Syndrome.

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

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

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

IMG_1442We all had a nice breakfast together. Mom fixed scrambled eggs, sausage, and English muffins, and Dad had a little of each. While Mom and I attended church, Stan and Dad played cribbage. After lunch, Stan and Dad went out to the garden. They spent about 30 minutes outside and then sat on the patio for about 20 minutes, just enjoying the beautiful weather and each other’s company. Stan was Dad’s welcome relief from being surrounded by a bunch of women who seemed to do nothing but tell him what he could and could not do. By the time that the guys came indoors, it was after 3:00 P.M. and time for Stan to return to Houston.

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

scargo_cross1We wrapped up our game of Oh Hell by 8:30 P.M., and by 9:15 P.M., all of were ready for bed. Before drifting off to sleep, I called Stan. He had texted me when he arrived home, but I needed to speak with him every night before I went to sleep.

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

IMG_1446While I was working, Dad and Dianne walked around the backyard for about an hour, which gave his legs a good workout.

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

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

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

scargo_cross3After Kathleen and Pam left, I returned to work until happy hour, and Dad took a nap. After dinner and happy hour, Mom beat us at Oh Hell. It was an early evening, and Dad was in bed by 8:00 P.M. I couldn’t wait to call Stan and give him the good news about today’s events.




Getting better doesn’t always feel like progress

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

progresscross1When I arrived at my parents’ home in Temple, Kristen, the speech therapist, was reviewing the dos and don’ts about eating and swallowing. While she was there, I showed her some foods that I had purchased in Houston, which included canned nectars and tomato basil soup. Based on some earlier conversations with Kristen, I had guessed that they qualified as thickened liquids, and she agreed.

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

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

progresscross2Before I went to bed, I needed to move my car from the front of the house to the side of the garage. While I was outside, I noticed a large stack of boxes beside the garage. It seemed that UPS had left my order from American HomePatient out of sight of the street and out of our sight too. After using the hand truck to haul everything inside, I unpacked the boxes and saw that they neglected again to send us the saline and 4x4s gauze sponges that I had ordered two orders ago. These supplies were vital for trach care and I had resorted to having the nurses to bring me gauze sponges during their visits.

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

progresscross3When they arrived at the dialysis center, Dad weighed in at 66.4 kg. Because his target weight was 63 kg (139 lbs), the dialysis nurse said that they would remove 4800 ml of fluid. Michell had experienced the last time that the dialysis center removed too much fluid. She strongly objected to this news and had the nurse lower the target to 1800 ml. Michell had changed a lot since she first joined us. In November, she had been shocked when I objected to the guidance of the wound specialist. Now, just two months later, she was standing up to the medical professionals. At the end of his dialysis session, Dad weighed 64.8 kg.

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

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

progresscross1We played Oh Hell after dinner, and Michell won. Dad still seemed a little down, but not as much as earlier. After Dad had gone to bed, Mom thanked me for what I had said to him earlier today, but I don’t think that anything that I said to him had had any effect. She disagreed and thought that he’d feel better tomorrow.

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

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

progresscross2At 11:20 A.M., Brenda and the shower tech, Pam, stopped by so that Michell could learn how to apply the shower shield to Dad’s dialysis port and how to help him transfer in and out of the shower. During the process, Dad also got to take a shower. Dad and his shower helpers were finished with Dad’s shower within 30 minutes, and Michell was certified to assist Dad with showers. After Pam left, Brenda spent the remainder of Dad’s physical therapy time working on his walking and balance.

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

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

jan20Shortly after Dianne arrived, Mom went to the grocery store. When she returned, Mom, Dad, and I got into the car and drove to the church. I was still intent on taking Dad back to church on Valentine’s Day, and I thought that we needed at least one practice run. During the ride there, I shared my plan for his recovery and how I believed that by the time the 296 days were up (148 days of hospitalization and 148 days of home care), he would be ready to be mainstreamed. We all agreed on a plan, but he added that he wanted to end the live-in aides in three weeks. I told him that if he used them to help him exercise, we could terminate our relationship with One On One Personal Home Care. As long as we had the aides, we might as well get out money’s worth from them. He seemed to be onboard. I hoped that this little talk would inspire him to exercise more.

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

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

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

progresscross3Mom was up before 4:00 A.M., and I met her in the kitchen when I made coffee. With the assistance of his walker, Dad went into the closet to select his clothes, and then he dressed himself. After dressing, he wheeled himself into the kitchen and joined Mom for a cup of hot water, which he referred to as weak coffee. Her coffee was somewhat stronger.

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

progresscross2While Dad and Dianne were at the dialysis center, I called Gale. I subtly implored her to return for one or two rotations. We would be ending our relationship with One on One Personal Homecare Services soon, and I wanted to see her again, if not for work, then for dinner. Gale would not commit to returning to work, but she agreed to come back for dinner. To get the rotation of aides to align with when I wanted to host dinner for Michell and Gale, I might need to get Michell to stay for a two-week stint. I didn’t want to hurt Dianne’s feelings by excluding her from the dinner, but Michell and Gale were by far our favorite aides.

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

progresscross1We had turkey sandwiches and Fig Newtons for lunch, and then Dad took a nap. After the loss of 2200 ml of fluid, he was feeling pretty punk. He said that he’d rather not gain weight if it meant having so much fluid removed. I explained that we’d work with Sue to ensure that they gradually increased his dry weight. She had just adjusted it a couple of days ago, so it seemed a bit premature to ask for another adjustment.

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