Feeding tube: removal delayed!

March 10, 2016. When I was at home in Houston, I still woke up at 3:30 A.M., but unlike my Temple workday, I had to make myself presentable and drive to the office, so I didn’t start working until 5:30 A.M. As I drove into the parking garage at the office today, I suspected that Dad was finishing his breakfast of Cream of Wheat and nasty-tasting cocktail of crushed pills and applesauce. As part of the daily induction process at the dialysis center, the nurse would ask if he’d had any falls since the last visit. Once again, Dad would have to declare that he had fallen, although it wouldn’t have taken a detective to determine that something had happened to him.

During my first full day in Houston, I worked until about 3:30 P.M., and then ran some errands on my way to my night class at Glassell. By the time that I arrived at the school, I had run out of time to call Mom to see how Dad had fared during dialysis. I hadn’t heard anything from her, so I had to assume that they both were OK.

fistulaDrawingI had spent a lot of time during the day thinking about Dad’s upcoming fistula surgery and the problems that he’s had coming out of anesthesia. I was glad that we had chosen the April 1 date, but I was beginning to have second thoughts about scheduling surgery on a Friday. Should anything go wrong after his surgery, we’d be at the mercy of the emergency room unless the surgeon was available after normal office hours.

March 11. When I called Mom at 8:00 A.M., she told me that she and Dad had slept in and had just finished eating breakfast. Evidently, Dad’s skin tear kept seeping blood yesterday. When she changed the dressing again this morning—the third day since his fall—she thought that the bleeding had stopped. I had never seen skin tears like his before. I was no expert, but this long tear seemed like it would take a long time to heal. As I had suspected, when Dad walked into dialysis yesterday, the nurses commented on his face, and instead of asking if he had had any falls, they asked how he fell.

During my call with Mom, I shared my concerns about Dad and his history with post-op delirium from the anesthesia. We decided that we would discuss our concerns with Dr. Patil, Dad’s PCP. I also suggested that we speak with Dr. Jaffers, the surgeon, so that he might speak in advance with the anesthesiologist. I also told her that I wanted to reschedule Dad’s Saturday dialysis session to Monday, April 4, in case he wasn’t well enough to make his session the day after surgery. Mom said that she would talk to Sue, the dialysis nurse practitioner and our friend.

ourCatsTonight was Stan’s regular poker game, so I spent the evening on the couch with my cats. When I was home in Houston, I spent most of my time running errands, doing laundry, and switching out my clothes to accommodate the changing seasons. I would have preferred some downtime with Stan, but the cats were good company, albeit not great conversationalists.

March 15. Dad had 2,000 ml of fluid removed today during dialysis. After talking with a few people at the dialysis center, he decided that he didn’t want to impose on anyone, so he decided that he would not ask to change either his surgery date or dialysis schedule. This news upset and frustrated me. During his past two surgeries last year, Dad had suffered from post-op delirium for a minimum of two days. Because he had to concentrate to swallow correctly, I was afraid that he might aspirate during a delirious state. However, as stubborn and determined I was, I was no match for Dad when he made up his mind.

tubefeed3March 16. I worked from the Houston office again today. Back in Temple, Dad had an appointment with the Tube Clinic at the gastroenterologist’s office to have his PEG tube removed. I was eager to talk with Mom to hear how Dad had handled the procedure. However, when I spoke with her, she said that Dad did not have the PEG tube removed today. Instead, the nurse told Dad that he would first need to pass another Modified Barium Swallow Study (MBSS). This requirement was news to us. Because Dad had already passed an MBSS earlier and had been eating for a month, we thought that he had met his requirements to have the PEG tube removed. Unfortunately, the x-ray department at the hospital didn’t have any available appointments today for completing the study.

After Mom and Dad returned home from the doctor’s office, they received a call from the x-ray department at the hospital. Because of a last-minute cancellation, they could administer the MBSS today. Mom and Dad returned to the hospital for the test, and he passed the solids and thickened liquid portion, but did not do well with thin liquids. The doctor said that he would require additional therapy before she could recommend removal of the PEG. Dad couldn’t get another appointment with Dr. Pfanner’s office until after his surgery date, which meant that Dad would have the PEG until sometime after his fistula surgery. I knew that Mom and Dad were disappointed, but I was secretly relieved. Not worrying about Dad’s ability to swallow after surgery seemed like a big win to me. It’s true; God works in mysterious ways.

tubefeed4I stayed in Houston for a couple more days. I didn’t get much information from Mom about Dad’s condition during my daily calls. When I spoke with her on Friday, March 18, she told me that she would give me more news about Dad’s appointment when I returned to Temple on Saturday. Unlike me, she didn’t come to the phone armed with copious notes about the day’s activities, so our in-person chats were usually more productive.

I had a busy Saturday morning in Houston and didn’t start my trip back to Temple until shortly before noon. Dad was still napping when I arrived at 2:00 P.M. After I had been there for about an hour, I opened the front door and found a package that was addressed to me. Because Dad was taking antibiotics, the gastroenterologist had prescribed some probiotics for Dad, which I had to order from Amazon. The package was shipped in cool packs to keep the bacteria cool. I had no idea how long the box had been sitting in the sun, but the package was barely cool when I opened it. I hoped that the expensive bacteria were still viable.

When I asked about Dad’s additional swallow therapy, Mom said that she had not heard from anyone at the hospital.

Stan couldn’t join us for the weekend, but Mom, Dad, and I still enjoyed a game of Oh Hell.

bluebonnetsMarch 20. This morning got off to a good start. The weather was beautiful, and the Texas bluebonnets were in full bloom. The three of us slept well, enjoyed a great breakfast of eggs and homemade English muffins, and then we went to church.

I had hoped that after church we could drive 30 miles to the neighboring town of Cameron and take some family photos amid the flowers. Unfortunately, Dad said that he was not feeling well and just wanted to stay at home for the remainder of the day. I was a bit of a poor sport about having my plans dashed, but he was adamant that he would not leave the house again for the day.

Thinking back on the day, I suspect that all of the standing up and sitting down during the church service affected his back. He didn’t say anything at first, but as the day progressed, he complained about sharp pains.

March 21. I was more sleepy than usual when my iPhone woke me this morning. I dragged myself out of bed shortly before 4:00 A.M. and went downstairs to my parents’ office to work. Dad was in a lot more pain today than yesterday, but he couldn’t seem to pinpoint the location more than just “somewhere in the middle.” I poked around on his belly to see if he had any rebound tenderness, which could be a sign of appendicitis, but that didn’t appear to be the problem. The pain also seemed too low to be his gallbladder. After eliminating all of my past maladies, I left him alone, and he stayed in bed until almost 8:00 A.M. Fortunately, Dad already had an appointment scheduled today at 1:30 P.M. with Dr. Sarla Patil, his PCP. I called her office to see if we could reschedule the appointment to an earlier time, but they didn’t have any earlier times available.

tubefeed2In addition to our concerns about Dad’s abdominal pain, we had a list of questions for Dr. Patil. At the end of the exam, she said that she thought that Dad would benefit from some additional physical therapy and referred Dad to another month of home care. She couldn’t tell what was wrong with Dad from an office examination but decided not to pussyfoot around, and she ordered a CT scan for Wednesday morning, two days from now.

She also said that I was overly concerned about Dad and the anesthesia, and I hoped that she was right. Although Dad’s skin tear from March 8 was still seeping, she said that it was healing. She added that if she were to prescribe an antibiotic, it would be the one that he was already taking.

On the way home from the doctor’s office, we stopped by the hearing aid office so that Dad could have his hearing aids cleaned, which would improve the communication in the house.

After we returned home, I worked for another hour, and then I stopped for happy hour. After our dinner of beans and franks, we played Oh Hell, and I won.

tubefeed3My husband’s cousin called me, thinking that he was calling Stan. Stan’s mother was one of 12 siblings. Stan’s uncle, the last remaining sibling, was now in hospice. I called Stan to pass along this sad information. Stan’s uncle was 86—one year younger than my father.

March 22. Dad was still in pain when he woke up this morning. Although he was moving slowly, he left for dialysis only a couple of minutes behind schedule. When Mom returned home at 7:00 A.M. from dropping Dad off at dialysis, I took a break from work to have breakfast with her. We turned on the television and learned about the bombings in Brussels; ISIS claimed responsibility, killing 31 people.

tubefeed1I called the swallow therapy department at Scott & White Memorial Hospital. After Dad had partially aspirated thin liquids during his last MBSS, Dr. Sherrad wanted to meet with him to show him some exercises, and I wanted Dad to get started. Because Dr. Patil had ordered more home care and additional physical therapy, I suggested to Dr. Sherrad that we have Dad’s PCP add swallow therapy to her order. Dr. Sherrad also thought that the additional swallow therapy would be a good idea. I called Adan, our friend who managed the home care therapists, to see if he had received the order. He hadn’t but said that when he did, I could call the PCP’s office and ask her to send him the referral for swallow therapy.

Everything seemed to be coming together and I was glad that Dad would be receiving more physical and swallow therapy. Although I was glad that Dad would still have the PEG during his surgery, we were all ready to move past this time in his life and be finished with the feeding tube.

Photo by Vladimir Kramer on Unsplash

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

Not the Valentine’s Day that I had envisioned.

February 11, 2016. Dad had another good night’s sleep. He was awake by 4:00 A.M. and was soon ready for dialysis. Fortunately, he was ahead of schedule because the HOP bus arrived at 5:40 A.M., 20 minutes earlier than our scheduled pickup time. They have a policy that states that if they have to wait on a rider for more than five minutes, they can revoke the rider’s service. This was not the first time that they had arrived 20 minutes earlier than our scheduled pickup time. I can’t count the number of times that he sat outside the house in his wheelchair waiting on them. I think that they had had to wait for him only once.

Dad and Michell returned home from dialysis at 12:30 P.M. Shortly after their return, I started packing up my computer and joined Mom, Dad, and Michell for lunch. I wanted to attend my Thursday night class tonight in Houston, and I departed for Houston after eating.

So far, Dad seemed to be doing well without his trach. I, on the other hand, was as nervous as a long-tailed cat in a room of rocking chairs. On the one hand, the way in which he was improving was just this side of miraculous. On the other hand, I kept waiting for the other shoe to fall. I practically held my breath every time he swallowed, and I just about leaped out of my skin when he talked while he was eating. Kristen had warned him against talking while eating because of the increased risk of aspiration. With the trach gone, all of our backup options were gone. If he aspirated now, he’d be back in the hospital and on a ventilator.

While I was in Houston, Dad’s day was uneventful, which was my idea of a perfect day. After his post-lunch nap, Michell and Mom covered Dad’s dialysis port with layers of dialysis port shields, enabling him to take a shower. Like eating, showering was another daily activity that most of us took for granted but was a potentially lethal activity for Dad.

February 12. Dad slept in until 5:30 A.M., which enabled Mom to get a bit more sleep, too. I had been worried about moving Mom into the room with Dad because she needed her rest and Dad was a fitful sleeper, to say the least. By 6:45 A.M., Dad was eating his typical breakfast of Cream of Wheat and peaches. After breakfast, Michell helped Mom administer Dad’s morning meds.

Shortly before 11:00 A.M., Pastor Don from my parents’ church stopped by to visit with Dad. He hadn’t been by to see Dad recently, and I was sorry that I missed him. I was still in Houston and would not return to Temple until tomorrow.

Don’s visit with Mom and Dad was interrupted by Janet, Dad’s occupational therapist. Her presence also provided Dad with an opportunity to sharpen his wit. He and Janet usually spent the entire session trading good-natured barbs. We were fortunate to have a therapist like Janet. She was good-natured, gave Dad a run for his money, but didn’t take any hooey from him.

Janet departed at lunchtime, and Dad had a good meal of ham and cheese on a homemade English muffin, pickles, nectar, and a Fig Newton. He would need a hearty lunch. Just before 2:00 P.M., he and Mom went bed shopping at Ashley Home Furnishings. They were back home by 3:00 P.M., and Dad was ready for a nap 15 minutes later.

At 5:00 P.M., Dad enjoyed a glass of Sprite during happy hour, which was followed by a dinner of meatballs and avocado salad, and some strawberry sherbet. For Dad, you couldn’t improve much on this meal, unless you substituted salmon for the meatballs. Mom, Dad, and Michell played a game of Oh Hell and were heading to bed by 7:45 P.M.

February 13. Dad was awake at 4:00 A.M. and was eager to get up and get ready for dialysis. Because he was still receiving Nepro during the night, he could not get out of bed until Mom disconnected him from the Kangaroo pump. By 5:00 A.M., Dad was eating his Cream of Wheat, but with pears today. When he finished his breakfast, Mom administered his morning meds. Dad was ready for the HOP bus shortly after breakfast, but today the bus didn’t arrive until 6:15 A.M.

While Dad was in dialysis, Stan and I left Houston for our return trips to Temple. Stan left at 8:30 A.M., and I left two hours later. Dad and Michell returned home from dialysis at 12:25 P.M., and I arrived in Temple just as the four of them were finishing their lunch.

I had barely unloaded my car when Mom and Dad said that they were going to back to Ashley Home Furnishing to look at some more beds.

While Mom and Dad were gone, Michell told Stan and me that she was very concerned about Dad and Mom being alone. She was concerned that we were ending the service with One on One Personal Homecare too soon. Gale had expressed a similar concern. I discussed some options with Michell and asked if she would be able to stay on for the month of March. She wasn’t sure that she could, so we dropped the subject.

Dad had not been embracing our plan to drink Nepro during the day; however, he needed the extra the extra protein that it provided because he was still very underweight. The gastroenterologist was not going to pull the G-tube until we could show that Dad could consume enough calories without it. I also didn’t like Mom waking up at 2:00 A.M. to refill the tube feed bag. I tried giving him ½ can of the Nepro when we administered the nighttime meds. It was a little messy, and he probably didn’t get all of his meds, but it might work. Meanwhile, my 140-pound father kept saying that he didn’t want to get fat.

Dad ate a pretty decent meal tonight of spaghetti and angel food cake, and he won big time at Oh Hell. When I changed his stoma dressing, it looked as though the trach was completely healed and only the neck wound needed to heal. His trach dressing hadn’t been changed since I left town  2-1/2 days ago, but the dressing contained very little drainage. Amazing.

February 14. I had been eagerly anticipating this day for weeks. Today the four of us—Mom, Dad, Stan, and I—were going to attend church together, and this would be the first social outing for Dad since he entered the hospital nine months ago. All of the pastors and some of the church members had been very supportive during the past few months, and getting Dad back to church would be a significant milestone. Unfortunately, he woke up at 7:30 A.M. with a terrible congestion. Stan also told me that he had heard Dad coughing during the night and using the Yankauer suction wand. I didn’t want to verbalize my fears that the congestion might have been caused by aspiration.

I quickly administered a breathing treatment to help break up his congestion, but he was just too sick to go to church. He balked about eating breakfast at first but acquiesced when he saw that Mom had prepared eggs, sausage, homemade English muffins, and her Christmas morning bread. This spread wasn’t typical of our Sunday-morning fare, but this was supposed to be a special day. Before Dad left the table, he had managed to eat his fair share of everything.

I was very disappointed that he didn’t attend church with Mom and me, and had to extend his regrets to some of our friends at the church. When Mom and I returned home, Dad and Stan were playing cribbage. I gave Dad two more breathing treatments during the day and gave myself one in an attempt to deal with my developing congestion. Shortly after we had finished eating lunch, Stan departed for Houston.

During the afternoon, my parents watched a golf tournament, although they seemed to sleep through most of it. They woke up shortly before 5:00 P.M., and we had a nice happy hour. Dad nibbled at his dinner of a frankfurter, tomato, and avocado salad. After eating a slice of angel food cake, he was ready for a game of Oh Hell, which I won.

By 8:00 P.M., Dad was on his way to bed. Before Mom administered his meds and set up the Nepro and Kangaroo pump, I administered another breathing treatment. By 8:30 P.M., Dad was drifting off to sleep, but I feared that he wouldn’t get a good night’s rest.

Intentional decannulation!

February 8, 2016. When I woke up this morning, I thought I heard Dad and Mom talking, but when I went downstairs to check on them, she was sleeping, and he was rolling over in bed. I donned my scrubs and headed to my parents’ office to work. Shortly after 4:30 A.M., I heard Dad calling out my name. When I entered the master bedroom, he told me that he was ready to get up. He had not yet consumed three cans of Nepro overnight. I persuaded him to try to sleep for a bit longer. In the end, he stayed in bed until 6:15 A.M. Dianne came in and unhooked Dad from the now-empty tube feed and helped him into the wheelchair. Dad shaved, got dressed, and headed into the kitchen to prepare his hot water while Mom got dressed. While Dad read the paper, Mom prepared pancakes for their breakfast.

decan_cross2At 7:40 A.M., Dad said that he wanted to lie down. When he returned to the bedroom, I prepared his meds and watched as Mom administered them. While Dad took a short nap, Dianne called Becky to see if Michell would be returning tomorrow. Michell’s mother had undergone gallbladder surgery last week, and I didn’t know if her mother’s recuperation would affect her ability to return. I had tried to text her, but it seemed that her phone number was no longer valid. Becky told Dianne that Michell had a new phone number and planned to return two days from now on Wednesday.

Brenda stopped by at 9:20 A.M. for Dad’s physical therapy session and gave him a good workout. When I told her that our skilled nursing services had ended and that we were ending our aide service in less than two weeks, she was very concerned. The aides had been a godsend. I could not have kept working, and I’m not sure that Dad would have survived without their assistance. However, although Dad had not fully recovered, my parents felt that they had reached a point where they could get by without them. My mother was weary of having the extra people in the house, and they cost more than $1,000/week, and to date, they had been with us for 16 weeks. Before she left, I told Brenda that I would contact Adan to talk with him about our remaining therapy home care. She said that she would tell Adan to expect a call from me. When Brenda left, I sent a text message to Adan, asking him to call me.

decan_cross3Shortly after Brenda left, Mom, Dad, and I drove to the automotive repair shop to retrieve Dad’s SUV. We had left it there on Friday, and it was now ready. We returned shortly before noon. After lunch, Dad wanted to take a nap before his 2:00 P.M. swallow therapy session with Kristen.

Like many of his sessions with Kristen, she spent quite a bit of time reminding Dad about what he could eat. We also spent some time talking about sodium.

decannulationAt 3:25 P.M., the four of us piled into Dad’s SUV and drove to the pulmonary clinic. I had been crossing my fingers and toes for days that this appointment would turn out well. After taking Dad’s vitals, the office staff ushered us into the exam room at 4:00 P.M.  Dr. Giri and Svenja (the trach goddess of Scott & White) were pleased that the diameter of Dad’s stoma had decreased and agreed that it was time to decannulate Dad. I could barely contain my excitement. Within moments, Svenja removed the trach and showed me how to clean and dress the stoma. Before we left, she also gave me some supplies to dress the stoma until it closed. During Dad’s hospitalization and recovery, medical professionals reminded me that it takes longer for an elderly person to heal. I hoped that Svenja provided me with adequate free supplies. As we were leaving the pulmonary department, I said what I hoped would be my final goodbyes to some of the pulmonary staff that I had come to know during the past year—including Dr. Stewart, who had told us that Dad would probably never be able to eat carrots and peas. Score!

decan_cross1We arrived home at 5:00 P.M., just in time for a very happy happy hour. We watched the news, and an hour later Mom served us Swedish meatballs for dinner. By 7:45 P.M., we had finished playing cards and Dianne beat me at Oh Hell by one point.

After Dianne helped Dad get ready for bed, I walked Mom through the process of getting Dad hooked up to the Kangaroo pump and administering his nighttime meds. Fortunately, trach care was now a thing of the past. I would change his stoma dressing in the morning.

When I called Stan to tell him about the events of the day, he told me that Dianne had told him on Sunday that she had not ever worked for a client that had gotten better. Wow.

decan_cross3February 9. I woke up a little before 3:45 A.M. and woke Mom and Dad at 4:00 A.M. Mom had added the third can of Nepro only a couple of hours earlier, and about a cup remained, which meant that Dad would have to finish the remaining Nepro when he returned from dialysis. After getting dressed, he wheeled himself to the kitchen and prepared his hot water while Mom prepared his Cream of Wheat and figs. While Dad was eating, I worked with Mom to prepare Dad’s bag for dialysis and to administer his morning meds.

While Dad was in dialysis, our neighbor, Barbara, stopped by with some beautiful roses. She stayed for about an hour and got an earful from Mom and me about some bothersome things that happened to Dad during his stay in the Scott & White hospitals.

During dialysis, 1800 ml of fluid was removed, and Dad’s weight changed from 68.4 kg to 66.8 kg. After he returned home, we ate lunch and then Dad took a nap. While he slept, we connected him to the Kangaroo pump. During the two hours that he slept, he consumed the remainder of the Nepro.

decan_cross3After he got up, I knew that I had to change his stoma dressing. I was a little squeamish about this chore. I had this visual image of seeing the inside of his trachea. When I removed the old dressing, I was surprised at how much the stoma had closed. Although the skin on his neck had not closed, the trachea was practically healed. Svenja had told me that for a few days, when the dressing was removed, Dad would not be able to talk without covering the stoma. For all intents and purposes, the trachea had closed in 24 hours. I had no idea that the body could heal itself so fast. I’ve had paper cuts that took longer to heal.

During happy hour, we watched the news and were anxious to hear the results of the New Hampshire primary election. Mom beat the pants off everyone in Oh Hell, and by 7:45 P.M. I was helping Mom get Dad ready for bed. I don’t think that she realized how much work it was to care for Dad. Before heading up to my room, I checked my phone and learned that Trump and Sanders had placed first in the New Hampshire elections. Go figure.

After falling asleep, I was awakened by a text message. It seemed that the father of a Glassell classmate had died earlier in the evening. I had only seen photographs of David’s father, but after having worked so hard to keep my father alive, this death hit me hard.

decan_cross2February 10. Everyone was still sleeping when I started working, but at 5:00 A.M., I heard Dad insisting to Mom that he wanted to get up. We had moved one of the baby-monitor stations to the aide’s bedroom, so Dianne appeared a couple of minutes later to help Dad get up. Mom had already disconnected him from the Kangaroo pump. Because he got up early, at least one cup of Nepro remained in the tube-feed bag, and he would need to finish it later in the day.

Brenda arrived at 9:00 A.M. for Dad’s physical therapy session. Dad’s goal for this period was to be able to walk with a cane, and Brenda was doing her part to ensure that Dad’s balance would support that goal.

Minutes after Brenda left, Michell arrived. We said our final good-byes to Dianne. This last week with Michell would be our final week of aides. Stan had purchased some angel pins, and I gave one to Dianne as she left. Dianne’s loud non-stop talking sometimes grated on Mom’s nerves, but she was a good aide, and I had appreciated the way in which she cared for and watched out for Dad.

decan_cross3After lunch, Dad started giving me static about eating, saying he would not consume more food as long as he was receiving three cans of Nepro. I told him that I would not reduce the amount of Nepro by a can until he ate more. I had been monitoring his caloric intake since he started eating meals with us and he had never consumed more than 675 calories each day, which was not enough for him to maintain his weight, let alone gain weight and keep up his strength. We had both dug in our heels and I eventually left the room.

When he got on his bed for a nap after lunch, he pitched a fit when Michell hooked up the pump to his G-tube so that he could consume the remainder of the Nepro. He was starting to get on my last nerve with his constant refusals to exercise or eat. I took a break and went outside for a long walk. As I returned from my walk, I met Kristen in the driveway. It was 2:00 P.M. and time for Dad’s swallow therapy session.

decan_cross3When Mom and Michell got Dad up from his nap, he was still in a snitty mood and was a little rude to Kristen. Kristen had been in the house only a few minutes when we heard a knock at the door. Mom and I were thrilled to see Adan on our doorstep. Dad didn’t remember him, but Mom and I were very grateful to him for his support and all that he had done to enable us to get Dad eating again. Unfortunately, Dad’s icy demeanor didn’t thaw when he met Adan, and I was embarrassed beyond words. Kristen had told Adan about Dad’s great progress and had conspired with Adan to surprise us. While Adan was here, he mentioned that he had spoken with Dr. Randall Smith about Dad’s progress. Dr. Smith had saved Dad’s life by switching Dad’s discharge orders from hospice to home care and would always hold a special place in my heart.

Shortly after Kristin and Adan left, the doorbell rang again. Gale had arrived! We had arranged to have a dinner for both Michell and Gale. Although Gale hadn’t been our aide since Thanksgiving, she had been the perfect aide for Dad during his first week at home. She had implemented some of our home care standards and had taught me a lot. I don’t know how we would have coped without her.

decan_cross1Now that Gale was in the house, Dad was in a much better mood. The five of us enjoyed a nice happy hour, followed by a scrumptious meal. I had forgotten how much Gale liked playing Oh Hell, and she hollered with delight when she won. By 8:00 P.M., she had to leave to drive a couple of hours to her home. As she left, I hugged her goodbye and gave her an angel pin in the hope that she would remember us and how grateful we were for having known her.

Tomorrow was a dialysis day, so as soon as Gale left, Dad started getting ready for bed. Mom and I set up the Kangaroo pump and administered his nighttime meds.

The first part of the day was a little rocky, but I loved seeing Adan and Gale today. It felt like a day of transition, but the real transition was still a week away, when we would no longer have any aides.

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.