Holding steady in the ICU

August 25, 2018. When Dad had been hospitalized in 2015, extended time without eating had left him unable to swallow food without aspirating. Against all the odds and the prognostications of the naysayers, he had regained his ability to swallow again. The fear that he could suffer again from dysphagia gripped me, probably irrationally. Before Mom and I left home for the hospital this morning, I texted Adan, our friend and speech pathologist at Scott & White, for his advice. He told me to ask the attending physician for a speech consultation. Adan added that he was off work until Monday, but that he would alert Holly, the speech pathologist who was working this weekend. Holly was another Scott & White employee I really liked. Even if she couldn’t help Dad this weekend, just seeing her would provide calming relief to Mom and me.

steadyCross1Mom and I arrived at the hospital shortly before 8:30 A.M. When we entered Dad’s room, I checked the board to see the names of the nurses and aides who were assigned to him today. When I saw that Natalie was his nurse, I wondered if it could be the Natalie that we knew in 2015. Less than a minute later, I got my answer when she walked into the room. I was so thrilled and relieved to see her again that I ran to her and hugged her. In retrospect, I probably picked up all sorts of germs when I hugged her, but I didn’t care and would do it again. Not only was she an angel in blue scrubs, but she was also familiar with Dad’s medical history. Natalie, whom we had referred to as Daytime Natalie, usually worked in the Cardiothoracic Intensive Care Unit (CTICU) and was helping out in the Medical Intensive Care Unit (MICU) for a few days. Dad had also been in the MICU unit for about a month in 2015, and another nurse came by to say hello, saying that she thought that we looked familiar.

Shortly after our reunion with the nursing staff, the nephrology resident stopped by and said that she didn’t think that Dad needed to be dialyzed today. However, she added that the nephrologist would stop by later during nephrology rounds, and he would make the final decision after seeing Dad.

hip3At 9:45 A.M., the doctor and his entourage of fellows and residents entered Dad’s room. He reiterated that Dad was very sick. His low blood pressure, which they were keeping in the safe range with Levophed, was affecting his liver, kidneys, and lungs. When I asked about a speech consultation, he said that Dad’s blood pressure would need to increase before they could consider letting him swallow food. He went on to say that as it was, Dad was in danger of aspirating his own saliva. When I mentioned that Dad’s face and extremities seemed very puffy from excess fluid, the doctor said that dialyzing him could have unintended consequences. Although Dad needed to have some of his excess fluid removed, removing the fluid could cause his blood pressure to drop, so dialyzing him today seemed out of the question.

The doctor asked me about whether we would consent to using a ventilator. I told him that I would view using a ventilator as a last resort. When I asked if we could use CPAP or BiPap for oxygen instead of a ventilator, he said that CPAP had some risks, but inserting the ventilator also carried risks because you had to anesthetize the patient. I was so frustrated with Dad’s situation, and it seemed that everything hinged on our ability to increase his blood pressure. I hoped that Mom and I would not be faced with this decision.

hip1Just when we thought that we understood Dad’s plan for the day, the dialysis nurse entered the room. By 11:30 A.M. she was finished with Dad’s setup, and his eight-hour session had begun. She told us that the nephrologist wanted to see if they could safely remove 300 ml/hour. Over an 8-hour period, he could have as much as 2,400 ml removed, which would be great if he could tolerate it. They had given him a liter of saline the other day to increase his blood pressure, so I was not overly optimistic that they could reach their goal. The dialysis machine monitored Dad’s blood pressure and would alarm if Dad’s blood pressure dropped. Dr. Idoux, the nephrologist, said that Dad might need to be dialyzed every day for a while if he could tolerate it. I prayed that we could safely remove all of the excess fluid that he had accumulated over the past 7 to 8 months.

Because I knew that she would be honest with me, I spoke with Natalie about the wisdom of my leaving Dad for about 20 hours. She said that he seemed to be trending in the right direction, although during her time as a nurse, she had seen patients die who were about to be discharged. On that happy note, I posted my mobile phone number in the room and ensured that the nurses would contact me if I needed to come home. Johnson City was only a two-hour drive from Temple, and we would return if she or another medical provider thought that Dad was in jeopardy.

After taking a short lunch break, Mom, Stan, and I returned to Dad’s room at 12:45 P.M. Dad was still on dialysis, and his blood pressure was still holding steady. Levophed was supporting his blood pressure, but they had not needed to increase the dosage to compensate for the loss of fluid. Dad seemed a bit more aware, but he still faded in and out. I prayed that he would not wake up, notice that he was on dialysis, and pull out the lines.

steadyCross2I hugged my parents goodbye, and Stan and I left for Johnson City at 2:35 P.M., hoping and praying that both of my parents would be OK until I returned home tomorrow morning.

Is this fall number 5 or 6?

July 25. Dr. Ebert’s nurse called me today. She had repeatedly called my parents’ phone number but there had been no answer, and she was concerned that she might not have their current phone number. I confirmed that she had the correct phone number and suggested that she keep trying. About 30 minutes later, Dad called me to see if I had called him. Evidently, he had heard the phone, but my mother was away from home and he had not been able to answer it before it stopped ringing. I told him that the call was most likely from Dr. Ebert’s nurse. I couldn’t tell him why she was calling, but I was certain that she would attempt another call.

ouchCross4When I called Mom a couple of hours later, she told me that Dad had not walked or exercised since Stan and I had left on Sunday, three days ago. I suggested that she move Dad’s little step into the living room so it would be easier for him to access and perhaps use it. I didn’t think that it was a reasonable substitute for walking, but it was better than nothing. During our call, Mom told me that Dr. Ebert’s nurse had called to tell them that Dad’s November 20 nephrology appointment had been changed to Tuesday, July 31 (next week!), at 3:30 P.M. I was relieved that the appointment had been moved up because I didn’t think that Dad or his kidneys could wait four months to see a nephrologist. Also, with this schedule, I could do my volunteer shift at the wildlife center, drive to Temple for the appointment, and then come home on Wednesday in time for my shift in the cattery at the SPCA. Everybody wins.

fallGuyJuly 26. I called my parents’ home numerous times today, starting at 3:00 P.M. Finally, at 4:50 P.M., Mom answered the phone. I could hear Dad’s voice and a woman’s voice in the background, and Mom said that she would call me in five minutes.  When she called, she told me that Dad had fallen while trying to walk from the car into the barber shop. As they were coming home, neighbor Jo’s aide saw them and offered to help. She wheeled Dad into the house and started bandaging his bloody arms.

Upon hearing this news, I lost my cool. When we were in town this past weekend for Stan’s birthday, Mom mentioned that Dad needed a haircut. I told her to wait until we returned so that Stan and I could help get Dad into the inaccessible shop. Mom said that as soon as Dad fell, she could hear my words in her ears. I told her that she and Dad needed to reassess their living options, and she said that they would never live in a nursing home. I wished that they understood that they had options other than their large, unmanageable home or a nursing home.

Before I hung up, I told Mom to contact the orthopedic surgeon and schedule an X-ray to ascertain whether or not Dad had broken or rebroken any bones.

home4Cross3July 27. After spending a few hours away from home today, I logged on to Dad’s MyChart account and noticed that his Tuesday appointment with the nephrologist had been rescheduled to a date and time that I could not make. The change was required to accommodate a new appointment with the orthopedic surgeon. I called Mom to see if she would let me try to reschedule the nephrologist appointment to a more convenient time for me, and she agreed. I spent the next 30 minutes on the phone with a very patient woman who worked at the appointment desk at the dialysis center. I was able to reschedule the appointment with the nephrologist to Monday afternoon. It wasn’t the most convenient time, but I could make it work without missing any of my commitments or appointments in Houston.

July 29. After attending my church in Houston, I packed a small bag and drove to Temple. Traffic was better than I would have expected on a Sunday afternoon, but parts of US 290 still left me white knuckled. Although the seemingly 100-year construction project was nearing completion, some of the road conditions were still far from ideal.

gliderhairWhen I arrived at my parents’ home, Dad was sitting in a glider chair with his legs resting on an ottoman. It was the first time since his surgery in March that he had been able to get himself in this chair. In addition to it being much more comfortable than his wheelchair, having his feet elevated might help reduce the swelling in his legs. Unfortunately, while he was on the glider, he was watching the Texas Rangers beat the Houston Astros.

After dinner, the three of us played a game of Oh Hell, and Dad won.

July 30. Besides the afternoon appointment with the nephrologist, Dad had a 9:10 A.M. appointment with the lab. According to my parents, Dad seemed to be having weekly trips to the lab for blood draws. Each specialist ordered lab work that addressed only his or her area of specialty. With any luck, Dad wouldn’t need any more blood draws for a few weeks. After we returned home from the lab, Dad helped me assemble a canvas stretcher for an art project. Before we were finished, I had hauled at least six different tools from his workshop into the living room, but we had a good time working with the difficult stretchers.  After lunch, we all snoozed for a few minutes before going to the dialysis center to meet with Dr. Maaz Syed Ahmed, the nephrologist.

My parents had a little difficulty understanding him, but they liked this doctor. He encouraged Dad to keep taking one pill/day and to monitor his weight and blood pressure. Dad’s creatinine level was elevated above high normal, but the doctor didn’t think that that Dad’s level was alarmingly high. The doctor also did not recommend that Dad resume dialysis, but he provided the following guidelines:

  • Restrict fluid intake to less than 50 ounces per day.
  • Do not exceed 2,000 mg of sodium per day.
  • Schedule an appointment with a wound specialist to address the wounds on his legs.
  • Walk as much as possible, but when seated, keep his legs elevated.
  • To address any pain, take Tylenol. Do not take aspirin or Advil.

The doctor asked Dad to schedule a couple of follow-up appointments before we left the building. Dad now had another appointment in October with the nephrology PA and then in January with Dr. Ahmed. I hoped that Dad liked this doctor enough to follow his recommendations, which seemed to dovetail with Dr. Ebert’s advice on July 17.

As soon as we returned to their home, I packed up my car and drove back to Houston, arriving shortly before 7:00 P.M.

PenultimateFullSizeRenderAugust 3-5. After Stan arrived home from work, we drove to Temple and spent the weekend with my parents. Dad ignored my requests to walk with him and did not walk during the weekend. He and Stan built a higher step, which Dad was excited about using. I still didn’t think that the step was a reasonable substitute for walking, but Stan gave me a look that suggested that I not raise any objections. Dad had enjoyed working on this little project with Stan and felt that it would help him. For me to raise objections wouldn’t accomplish anything and would only irritate Dad.

As expected, we played Oh Hell Friday and Saturday nights.

August 7. Mom was not at home when I called today, so Dad and I had a chance to discuss her birthday dinner. She would be 91 in a couple of weeks, and Dad had assured Mom that I knew how to prepare her favorite food, chicken-fried steak. I had never fried a chicken, let alone steaks, and I was thankful that I had a membership with Omaha Steaks. I was pretty certain that they knew how to prepare chicken-fried steak. Because Mom loved balloons, I planned to get her some, and I also planned to have flowers in her honor delivered to the church for the August 19 services.

August 9. Dad accompanied Mom to the store today, but he stayed in the car. He had not been walking, but he had convinced himself that using the little step that he and Stan had made would be an adequate substitute for walking. Evidently, getting Dad from the house into the car was a real struggle, and it became clear to Mom that walking was important. She decided that Dad must start walking again and planned to broach the subject with him. I stressed to Mom that he needed to walk over the weekend so that he could get into the car on Monday for his physical therapy.

August 12. Dad didn’t walk today, but Mom said that she was able to help him transfer from his wheelchair into the glider chair (with ottoman). She said that he fell asleep as soon as he was situated. I was glad that he was out of his wheelchair and sitting with his legs elevated. I’m unable to watch television in these glider chairs because their soothing gliding action puts me to sleep within moments.

fallGuyAugust 13. Dad slipped or fell out of bed this morning while trying to transfer from the bed to the wheelchair. According to Mom, it took her about 30 minutes to get him up and into the wheelchair. This event marked the second time in the past couple of weeks that he had slipped to the floor. Getting Dad up and off of the floor exhausted Mom, which concerned me. Fortunately, he didn’t have a physical therapy appointment until 10:30 A.M., so they both had a little time to rest before they had to go to his physical therapy appointment with Christi. Shortly after PT started, Mom and Dad told Christi about his fall this morning. She stopped the therapy session and scheduled an appointment for Dad later in the day with the orthopedic surgeon’s PA. She said that she would consult with the surgeon and then call my parents to see if they should continue therapy. The therapist strongly suspected that Dad would require hip-replacement surgery. Ye gods.

August 15. My parents still hadn’t heard from the surgeon’s office, which meant that Dad was just sitting around without any physical therapy—regressing.

I was a little anxious about today’s activities. Tomorrow was Mom’s 91st birthday and her driver’s license would expire. The Temple DPS office was small, and when the 30 chairs inside were full, people had to wait outside in the 100-degree heat. Mom planned to go early to avoid the worst heat of the day, but I worried about her standing outside in the heat and sun. I also was worried that she might not get her license renewed, which would create an impossible situation for my parents. Until Dad was up and around, she was the only driver in the house.

badRehabCross1When I called Mom this evening, I was pleased to learn that she waited only 15 minutes outdoors and then another hour inside. Even better, her license was renewed. One hurdle down, numerous more to go.

August 16. Today was Mom’s 91st birthday. On this date 41 years ago, Elvis Presley died, and later today we learned that Aretha Franklin had died of pancreatic cancer. After Mom and I discussed the sad news of the day, she told me that someone from the surgeon’s office had called and scheduled a pre-op visit for Dad on Monday, August 20, followed by surgery on Wednesday. I just hated the thought of more surgery. It seemed to me that we were back to where we were on March 24 when Dad fell and broke his hip, and I dreaded the thought of another hospital stay.

 

Reaching another milestone: PEG removal!

April 13, 2016. My alarm woke me, but it was only just a little after 2:00 A.M., and the alarm was in my dream. I was able to get back to sleep and woke up at 3:45 A.M. when the alarm actually went off. I think that I inherited these wake-up dreams from my father. He often wakes up early from naps, swearing that Mom woke him.

While I worked, Dad sat at his desk in my parents’ office and finished preparing their tax return. Shortly after breakfast, Brenda, the home care physical therapist, called to see if she and her supervisor, Kathleen, could stop by later in the morning to assess Dad’s progress.

pegOutCross4I had to drive back to Houston this afternoon. I was already fighting to stay awake and decided to take a short nap during my lunch break, so I missed seeing the physical therapists when they arrived at 11:30 A.M. Dad was walking pretty well, but his recent back pain had affected his balance somewhat. Kathleen said that Brenda would focus more on his core muscles to help Dad with his balance.

Shortly after I woke up from my nap, the three of us left for Dad’s 2:20 P.M. appointment with the gastroenterologist. When we arrived, Dad weighed 151 pounds, his blood pressure was 112/69, and his temperature was 96 degrees. In the exam room, after Julie, the dietitian, asked about Dad’s protein and caloric intake, I was a little anxious when she said that Dad needed to consume an additional 20 grams of protein each day.

When Dr. Pfanner entered the exam room, he helped Dad up on the exam table and quickly removed the PEG tube. Dad didn’t feel anything, and Mom and I glanced away for a millisecond and missed seeing the “balloon” as the doctor removed it. For the better part of eight months, Dad had had a hole in his 87-year old stomach, and now I was concerned about how long it would take to heal and close. When I asked the doctor about how long Dad would have to abstain from eating and drinking, I was shocked when he said that Dad couldn’t eat anything for 4-6 hours, and then he should consume only Nepro until tomorrow. Today was the second time in four months that I had been amazed at the speed in which some of our body parts could heal. Dad’s trach stoma had healed in two days, and now his stomach would be ready to consume liquid in six hours. The epidermis doesn’t heal nearly as fast. I have had paper cuts that took three times as long to heal.

coffeeCupWe had driven to the doctor’s office in two cars. After the appointment, I helped my parents into their car, drove to Starbucks for some coffee, and then started my drive to Houston at 3:19 P.M. The traffic was relatively light, but I was feeling drowsy when I reached Waller, approximately 40 miles from home. Fortunately, Waller had a Buc-ee’s, one of the best rest stops in Texas. I stopped to stretch my legs and buy another cup of coffee. As I walked toward the exit, I met a wall of teenagers. Five buses had just unloaded more than 100 kids. I thanked my lucky stars for my perfect timing.

I got home shortly before 6:30 P.M.

April 14. According to Mom, Dad didn’t experience any problems during dialysis today. Although his blood pressure was a little low, it was not low enough to require midodrine to elevate it. He still complained of back pain, but he didn’t feel any discomfort at the site of his PEG stoma.

I asked Mom if Dad had tried to find the thrill on his arm every morning as he had been instructed by his surgeon, and her response was not what I had hoped. She said that they often have trouble finding it and that it’s not as strong as they would have thought. I told her to ask the dialysis nurses about it and that it’s too important to ignore. She agreed that asking the dialysis nurse was a good idea and agreed to ask one of them on Saturday, two days from now.

When the home care nurse stopped by, she said that she thought that Dad might be suffering from adhesions. I can’t imagine how she came to that conclusion, and Mom never mentioned where these adhesions might be located or what the nurse suggested that we should do about them. On a positive note, Dad’s vitals were good. Evidently, this nurse had come by the house about three months ago and was impressed by Dad’s progress since then. Before she left, the nurse helped Dad and Mom find the thrill on Dad’s fistula.

pegOutCross2April 15. Kristen, Dad’s swallow therapist, stopped by for her final session with Dad. Before she left, she said that Dad could start trying to swallow his pills. She encouraged him to start with very small pills and coat them in applesauce. Dad had been crushing the pills and mixing them with applesauce. Evidently, some of the pills tasted vile, so being able to swallow them would be a welcome change. Still, the thought of his swallowing pills made me nervous. I had been taking liquid vitamins for several years, and I suggested to Mom that we should ask Dr. Martin if Dad could swallow the pills with the liquid vitamins. When mixed with water, the liquid was a thickened liquid and quite slippery, which I thought might ease swallowing.

April 16. Dad had dialysis this morning. According to Mom, they removed about 1,500 ml of fluid. After a morning of running errands, I started my drive back to Temple, leaving my husband on the links with his golf buddy.

The highway from Houston to Temple passes through small towns, many of which get their revenue from speeding drivers. After my numerous trips to Temple, I knew when to slow down. Unfortunately, I wasn’t paying attention and resumed the 70 MPH speed a tad too early. I was stopped just outside of Somerville and got my second warning since Dad’s hospitalization last May. warningWhen the very nice officer handed me my driver’s license and warning, he advised me to watch my speed today. Because of several festivals in the area, there were many more patrol officers monitoring speeds than usual. As I eased back onto the highway, I noticed that I had stopped just a few yards shy of the posted 70 MPH sign. After setting my cruise control at 72 MPH, I arrived in Temple at 2:03 P.M.

With some assistance from Mom, Dad prepared a spaghetti dinner. Unfortunately, shortly after our nice dinner, Dad and I had another knock-down drag-out argument about his health and attitude about taking care of himself. Unlike so many other times, we eventually had a meeting of the minds and we agreed on a plan for managing his pain and boosting his protein intake.

April 17. Dad didn’t feel like going to church today, and the weather was dreary. The three of us enjoyed a nice breakfast of homemade cinnamon rolls, and then I worked on my computer until Mom and I left for church.

pegOutCross1After the church service, we mentioned to our friend Sue, who was also the nurse practitioner at the dialysis center, that Dad was still experiencing a lot of pain. She said that she would order x-rays for him. I also asked her about medical alert bracelets for dialysis patients with fistulas. For the rest of his life, he can never have blood drawn or his blood pressure taken on his left arm. She said that she thought that we could get him such a medical bracelet.

After a yummy lunch of grilled cheese sandwiches, Mom and I went outside to cover up some cantaloupe seedlings. We were expecting stormy weather, and she wanted to protect the young seedlings so that they wouldn’t drown. After watching the depressing evening news and eating dinner, we played Oh Hell, and Mom beat Dad by three points.

April 18. Dad had a 10:00 A.M. post-op appointment with Dr. Jaffers, the surgeon who had built the fistula in Dad’s left arm. While waiting for the doctor, Dad vomited in the exam room. According to Mom, he had just taken his morning meds before we left the house. The last time that he vomited, he had just taken his meds on an empty stomach. Other than the vomiting in the exam room, the doctor thought that Dad was healing well and that his fistula should be cured and ready to use during hemodialysis by early June.

pegOutCross3I thought that we also had an appointment for x-rays, but when we arrived in the radiology department, Dad was not on their schedule. I texted Sue because she had told me that she would enter an order for the x-rays.  Evidently, she had encountered a problem with her computer, and then she became distracted and forgot to enter the orders. While we were in the radiology waiting room, the order appeared, and Dad was called by the technician after a short wait.

The x-ray process was painful for Dad. Although x-rays aren’t painful, getting up on the hard table, being repositioned on the table, and getting down from the table was painful. I hoped that these x-rays would show something useful and actionable.

During an afternoon meeting with my manager, I learned that she had accepted a position in another business unit. She had been a wonderful manager and very supportive while I’ve been working remotely from my parents’ house. The two of us had made a great team, and it felt like she was breaking up the band. Although I knew that this move would benefit her, I was a bit apprehensive about how it would affect me.

I stopped working at 5:00 P.M. for our happy hour. After a nice dinner of leftovers, we played Oh Hell, and I lost again.

rainBefore going to sleep, I called my husband in Houston. Evidently, Houston had received between 9-15 inches of rain, depending on the area of town. According to the news, this was the worst rain event since tropical storm Allison in 2001 and has been dubbed the Tax Day Flood. Stan said that our house was OK. He didn’t know how much rain we received at our house. All he knew was that our 5.5” rain gauge had overflowed.

 

Another fall! A caregiver’s nightmare.

March 5, 2016. I drove Dad to dialysis this morning. He weighed in at 69.0 kg (151.8 lb), and the nurse told me that he would have 1,900 ml of fluid removed. From what I surmised, the doctor had established 68 kg (149.6 lb) as Dad’s dry weight. Dad took his walker with him to dialysis, but before leaving the house, Dad had breezed around the house in the wheelchair. When Mom picked him up, he weighed 67.6 kg (148.7 lb). After returning home, he walked for the rest of the day, using only his cane, and he did extremely well.

2016_mar_12While Dad was at dialysis, Mom baked a cake and I prepared Locke’s Lasagna, Dad’s fabulous recipe for spinach lasagna. When I was finished, I spent a bit of time outside, taking photos of the backyard. My parents’ fruit trees were in bloom, and the white and pink flowers made the trees appear very delicate. When I moved in for close-ups, I noticed that the bees were also enjoying the blossoms.

Shortly after Mom left to pick up Dad, my friend Rhoda called and said that she and her husband Mike had not yet left Houston. After all the brouhaha last night about our expected guests arriving for lunch and how that was upsetting to Mom, it turned out that she wouldn’t have to worry about serving lunch after all.

anotherFallCross3A few minutes after Mom and Dad returned home, Stan arrived from Houston. The four of us ate lunch and then Stan and Dad played cribbage. The weather was nice, so while I waited for our friends to arrive, I took a walk around the neighborhood. My parents were very fond of Rhoda and Mike and looked forward to seeing them again. Rhoda and Mike arrived mid-afternoon, and after we finished all of the greetings, I commandeered Rhoda for some software assistance, leaving Mike, Stan, Dad, and Mom in the sunroom to visit.

While the lasagna baked, we enjoyed an extended happy hour and tried to catch up on the past few months. I was pleased to see that Dad ate a large portion of lasagna and a pretty large piece of cake for dessert. After dinner, the six of us played Oh Hell.

When we finished our game, Dad prepared his concoction of meds and applesauce. My parents said goodnight to us shortly after 9:00 P.M., and Rhoda and Mike left a few minutes later. My parents’ house could accommodate several guests, but because our house was still transitioning from a homecare environment, our friends opted to stay at a local hotel.  Stan and I cleaned up the kitchen and went to bed around 10:00 P.M.

March 6. The four of us were up and at ’em by 6:30 A.M. Stan and my father went to Lowe’s around 8:00 A.M. to buy light bulbs, which provided Dad with a good walk. Stan let him out at the door, but Dad walked around the store and then back to the car with the assistance of only his cane.

MOULTRIE DIGITAL GAME CAMERARhoda and Mike arrived for breakfast around 8:45 A.M. Mom and I prepared waffle batter and link sausage, and Dad ran the waffle iron. It was another nice meal, and Dad ate his fair share of waffles, and I restrained myself from reminding him to eat without talking. My parents liked to leave leftover waffles outside for woodland creatures, like foxes and possums, but the six of us didn’t leave enough for a mouse.

I had hoped that Rhoda and I could escape for a photo safari in a neighboring town, but the weather was too dreary for black and white film photography. At 10:30 A.M., I was itching to get away for a visit with Rhoda, so we decided to hit the road and hope for some sun. About 30 minutes later we arrived at the neighboring town of Cameron, and the clouds thinned out and delivered a sunny day and nice clouds. We found some abandoned and storm-damaged homes and spent some time getting close to the structures, most likely bordering on trespassing. We had such a great time that we got a little carried away and lost track of time.

anotherFallCross2While we were gone, the guys and Mom watched part of a golf tournament on television. After eating such a large breakfast, Stan ordered salad takeout from Olive Garden for our light lunch. He ordered five servings and we still had tons of leftovers. Stan had to get back to Houston to care for our cats, so he left shortly before 3:00 P.M. The remaining five of us spent the rest of the afternoon visiting until happy hour. During happy hour, we shared some of our stories about the trials and tribulations that we had faced during the past few months. Unfortunately, Dad’s stories weren’t unique. Rhoda also relayed some disturbing stories about her father’s time in the hospital during the past year. We had a late dinner of tacos, which didn’t leave us any time for cards this evening.

Our friends left shortly after 8:30 P.M., after what seemed like a very short visit. I think that having our friends visit for the weekend was the perfect tonic for my parents, and for me. Happily, I would be back in Houston during the next weekend, and Stan and I would get to visit with our friends for two weekends in a row.

March 7. I was up early for work, but after having stayed up past my bedtime last night, I felt like I could have slept for another hour. Mom finally woke Dad after 6:00 A.M. After all of his physical activity during the weekend, he was pretty tired.  I knew how much he preferred zipping through the house in the wheelchair and was pleased that was starting out the day with the cane and not the wheelchair.

anotherFallCross3Although I was pleased with his physical activity, I noticed that he seemed breathless when he ate, and he often had a runny nose after meals. If I remembered correctly, Kristen, Dad’s swallow therapist, had mentioned that a runny nose was a sign of aspiration. After watching him like a hawk, I decided that he seemed OK, so maybe I was worrying unnecessarily, which seemed to be my modus operandi.

Mom baked some pineapple banana bread today, and during lunch, we watched Peyton Manning tearfully retire from football. I put in another full day of work and was able to take a walk before lunch today. I stopped working early so that I could move a couple of our many floor mats to our office for Dad. As long as we had a supply of them on hand, we might as well use them to protect the carpeting in the office.

We had Sloppy Joes for dinner, but Dad ate only ½ of his sandwich. He had been doing pretty well with his intake the past few days and was drinking the Ensure and Nepro, so I didn’t pester him to eat more. After dinner, we played Oh Hell again, and I was tonight’s big winner.

By 8:30 P.M., Dad had crushed and consumed his meds with applesauce, and I was ready to call Stan five minutes later.

March 8. It was dialysis day for Dad and we were all up early today. The weather forecast didn’t bode well for today. Although stormy weather was in the forecast, Mom and Dad left for dialysis before the rain started. Shortly after Mom returned home, the weather turned bad with tornadoes in nearby Lampasas and San Saba.

anotherFallCross2When it was time to pick up Dad from dialysis, the weather was terrible, and I decided that I should make the trip to the dialysis center. The roads had terrible ponding and mild flooding the entire way. About a block from the dialysis center, the police had blocked the road and I had to go around deep water by traversing a parking lot. When I arrived, Dad said that he was relieved and glad to see me. By the time that Dad was ready to leave, approximately 30 minutes had elapsed. When we walked outside, I was amazed to see that the rain had stopped and the sky had cleared. As I drove back to the house, I could not believe how much the water had receded. I could only describe how flooded the streets had been because there was no evidence of the terrible conditions that I had countered during my trip to pick up Dad.

When Dad had arrived at the dialysis center, he weighed 69.1 kg (152 lb). After 1,400 ml of fluid was removed, he weighed 67.7 kg (149 lb). He had eaten quite well during the weekend, and I was relieved that he had not retained more than the usual amount of fluid.

I worked until 4:30 P.M. and then picked up my film camera and walked about a ½ mile down my parents’ street. When I returned, Dad was at the bar, preparing a drink for my mother. He then took his soft drink and walked into the sunroom where Mom and I would join him in a matter of moments.

anotherFallCross1It was then that we heard the sound of trouble. Neither Mom nor I witnessed what happened, but we think that Dad fell while stepping into the sunken sunroom. He hit his mouth on the wicker furniture that held Mom’s collection of African violets. He and a few violets were damaged, but nothing too serious on either front. His lip was pretty bloody, and we fetched a cold compress for him to help control the bleeding and swelling. It was then that we noticed the dandy skin tear on his leg. Fortunately, we still had ample first aid supplies. I bandaged up his leg and cleaned up his lip. For a few days, he would look like he had been in a fistfight.

After dinner, I showed Mom and Dad how I dispensed the pills in the two-week pill organizer. It was 8:00 P.M. when we were finished with that activity, but Dad wasn’t ready to go to bed until we played a game of Oh Hell.

March 9. The weather was pretty bad overnight. My bedroom had windows on three sides and the thunder and lightning woke me up and interrupted my sleep during most of the night. I might have fallen back to sleep had the pill alarm not gone off in the kitchen at 12:52 A.M. I had purchased the reminder clock to help Dad remember when to take his pills. My parents didn’t like the clock, and I’m pretty sure that I’m the only one who was disturbed by it. I had set the alarm time correctly, but the clock time was off by 12 hours.

Dad’s leg bled some overnight, so I had to bandage it again this morning. I worked until it was time for us to go to the clinic at S&W to meet with the fistula surgeon, Dr. Jaffers.

anotherFallCross1During Dad’s last plan of care meeting, we had all decided that Dad would have the graft procedure, which uses artificial tubing and not the patient’s vein. However, Dr. Jaffers convinced us that we should take the fistula route. If he decided during surgery that the graft would be the better option, he would fall back to that choice. His assistant offered us two dates for the surgery: March 25th or April 1st. Because the available time on the March date was in the afternoon, we thought that we should go with the April 1 option. Besides the fact that I don’t believe in scheduling surgery for the afternoon, Dad didn’t recover well from anesthesia. I wanted to ensure that he could spend a few hours at the hospital if he experienced delirium or hallucinations. March 25 was also Good Friday. If Dad experienced side effects from the anesthesia or didn’t feel well two days after surgery, he would not be able to attend church on Easter.

This surgery was a big deal, or at least it was for me. Dr. Jaffers would surgically connect an artery to a vein in Dad’s left arm, which would then be used to remove and return blood during dialysis. When the fistula was cured, Dad would have the dialysis port removed, enabling him to shower and swim without protection. Dad wasn’t thrilled that he would be stuck with two needles three times a week or the fact that this procedure implied that he would need dialysis for the rest of his life. However, the fact that he could have the surgery was a sign that he was getting stronger.

anotherFallCross1By the time that we got home, it was well after 1:00 P.M. By the time that I finished packing for my trip home, ate a quick lunch, and reviewed some of the medical tasks with Mom, it was after 3:00 P.M. I finally left for home at 3:20 P.M. The weather between Temple and Houston was miserable, but the traffic wasn’t bad until I got about 10 miles from home. By the time that I finally arrived home at 7:00 P.M., I was good and tired and very glad to see Stan and my kitties.

 

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.

 

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.