Maybe rehab won’t be so bad after all

March 29, 2018. Mom left home for the hospital shortly after 8:30 AM., and I followed her in my car about 15 minutes later. By the time that Mom arrived at Dad’s room, he had been visited by Mike (today’s physical therapist) and a nephrologist. According to Dad, Mike had had him walk around the bed. He seemed to like Mike and was eager to have another session with him.

When I arrived, Dad was finishing his breakfast of hot cereal, pancakes, eggs, and a few cups of apple juice. Dad looked much better today and had a healthy appetite. He was still a little confused about the dreams and hallucinations that had occurred during the night, but he seemed to be in a good mood. Unlike Dad’s previous surgeries, I had been able to warn him about the potential for hallucinations and confusion after this surgery. yoRehabCatI was encouraged that he shared his events with me so that we could sort out what was real. During the day, he asked me about a cat that was sitting in the corner of the room. Although it seemed real to him, he believed me when I told him that there was no cat in the room, although he could still see it.

noRehabCross3The morning’s happy mood took a nose dive when Alisa, the nurse, tried to give him a doxycycline capsule. He insisted that he would not take this pill because it had made him vomit. Alisha said that she would give him a Zofran for nausea to take with the antibiotic.  I reminded him that he had had problems with this antibiotic when he took it on an empty stomach, but he had just eaten breakfast. He eventually calmed down and agreed to take it, but I was not hopeful that he would take the second pill after dinner.

Sara, today’s physician’s assistant, stopped by at 10:15 A.M. to tell Mom and me that Dad could be discharged to Cornerstone as early as today. Mom told her that we wanted to meet with a Cornerstone representative and tour the facility before Dad was discharged. Sara thought that our request was reasonable and would relay our request to the case manager. When I asked her if we were responsible for Dad’s meds, she said that the hospital would send Dad’s list of medications to Cornerstone and that they would obtain them through their pharmacy.

yoRehabCross1At 10:30 A.M., I went to the cafeteria to get some coffee for Mom and me. When I returned, Dad was in the bathroom. Being able to get out of bed to use the bathroom was a significant and welcome milestone after hip surgery. With his movement at glacial-speed, the short trip took quite a bit of time, but Carrie, the aide, eventually got him back into the bed at 11:10 A.M. After watching the process that was required to get Dad from the bathroom to the bed, Mom was convinced that we had made the right decision to have Dad discharged to a rehab facility. Dad had insisted that he could have out-patient therapy, but Mom and I together could not have safely transferred him from home to the rehab facility.

Shortly after Dad was settled back into his bed, Dr. Bolanos and Dr. Duran, the nephrologist, and her entourage arrived. Dr. Duran said that Dad’s kidneys were back to where they were before this surgery, whatever that meant. Dad hadn’t seen a nephrologist or had a blood test since early December, so I wasn’t convinced that his kidneys had been in great shape when he entered the hospital. I knew several of the Scott & White nephrologists and was disappointed that one of them was not working at the hospital this week.

When the nephrologists left, Dr. Bolanos spoke with Dad again about rehab, and he was still very resistant to her recommendation and dismissed her reasons why he should have in-patient therapy, insisting that Mom needed him at home. After a few minutes of unsuccessfully trying to change his mind, she left the room.

yoRehabCross1After the doctor left, Dad started talking about how he wanted to extend his hospital stay so that he could get the physical therapy here that he needed before he went home. I explained to him that his insurance didn’t allow patients to extend their hospital stays for physical therapy. I also reminded him that hospitals were germy places and that he didn’t want to stay any longer than necessary. I added that the hospital wanted to discharge him either this afternoon or tomorrow morning and that there was no way that Mom could take care of him. Because Mom seemed to be Dad’s primary concern and his stated reason for not going to rehab, I had told her that it was up to her to convince him to go to rehab. When she started telling him about her appointment at Cornerstone this afternoon, I excused myself and went to the waiting room so that they could talk in private.

Shortly after I returned to his room at 11:45 A.M., Brenda, the occupational therapist, and Carrie, the aide, arrived for a therapy session with Dad. The goal of an occupational therapist is to prepare the patient to become independent in the job of daily living, and today she wanted to get him into the bathroom. Brenda and Carrie had him practice sitting on and standing up from the commode. She also had him stand at the sink and brush his teeth.

yoRehabCross2During Dad’s therapy session, Mom told me that he had agreed to go to Cornerstone and complete his therapy as fast as he could. The doctor and therapists had estimated that he would require two weeks, but he planned to be ready to come home in half that time. I was thankful and encouraged by his change in attitude. I left the room to find Dr. Bolanos to let her know that we were all on board with his rehab plan at Cornerstone.

I needed to return to Houston today, but Mom wanted me to join her for her appointment with Marie at Cornerstone. Because we wanted to spend as much time with Dad as possible, I picked up a soggy sandwich from the cafeteria for us to split and eat in Dad’s room. At 1:00 P.M., I woke Dad from a nap to tell him goodbye. It was a good goodbye, and I felt optimistic about his prospects. Mom and I left the hospital together and drove in separate cars to Cornerstone for our 1:30 P.M. appointment. After Mom signed a huge stack of papers, Marie provided us with a tour of the facility that ended at what would be Dad’s semi-private room. The current occupant was due to be discharged tomorrow morning, which meant that Dad would have the room to himself for some time. Everybody was very nice, and it seemed like a nice place. I hoped that Dad would do well here.

yoRehabCross2After our meeting, Mom returned to the hospital and I drove to my parents’ home, where I worked for another hour before driving to my home in Houston. Five days ago, Mom called me with news of Dad’s fall. Because of his severe osteoporosis, I feared the worst for him. With Dad seeming to be inspired to get back on his feet, I now felt optimism that I hadn’t thought possible.

They say that he has to go to rehab, but he says No.

March 27, 2018. Because I was concerned about how Dad fared during his first night after surgery, I didn’t sleep well and woke up just before 2:00 A.M. I hoped that he had slept well and that he had not tried to get out of bed during the night. Mom and I didn’t have much of an opportunity to visit with Dad yesterday after his surgery, but I had warned him that he might experience some confusion after his surgery. I knew that I would be spending a few hours at the hospital today, so I set up my computer shortly before 5:00 A.M. and worked for about four hours. Thirty minutes later, Mom and I arrived at the hospital.

noRehabCross3When we entered Dad’s room, we found that a nurse and a couple of nursing students were turning Dad in his bed. Until patients can get out of the bed, they must be turned every few hours so that they don’t develop bed sores. After Dad was resituated in his bed, Dr. Bolanos entered the room. Within moments, the two of them were arguing about Dad’s antibiotic suppressant drug. He insisted that the doxycycline gave him an upset stomach and that he hadn’t taken the pill in six months. She suggested that he take the antibiotic with food or with Zofran, which would prevent any nausea. He agreed but said that he would take only one pill a day and not the prescribed two pills. Fortunately, she avoided the subject of rehab during this visit.

Although Dr. Bolanos had steered clear of the contentious subject of rehab, Kim, the physician’s assistant, took the bull by the horns when she stopped by Dad’s room. While she was there, she described the different types of physical therapy available to patients and the patient requirements for each option. For Dad, she reinforced Dr. Bolanos’s recommendation for in-patient therapy at a rehab facility. As before, Dad insisted that he had to go home and take care of his garden and wife.

Dad_ot-paintShortly after lunch, Amy, the occupational therapist arrived and had Dad stand with the walker. Before Amy left the room, Brooke and Lisa, the physical therapist and her assistant, arrived. They had Dad stand up and sit down and then sit in a chair. While he was enjoying being out of bed, Pastor Tom entered the room. While Tom was there, he spoke of the many benefits of rehab. The pastors in that church always seemed to answer my prayers. Before Tom left, he urged Dad to get well quick because he needed a Christian in the church, which was a running joke between them. Tom had a very busy schedule this week, and Mom and I greatly appreciated his taking the time for a visit.

At 3:00 P.M. I returned to the house so that I could get in a couple more hours of work. I was feeling the effects of my sleepless night and drank coffee to keep myself awake until 5:00 P.M., which was when I logged off for the day. While I was working, my parents’ neighbor, Jane, dropped off a Cobb salad that she had purchased for us while she was in Austin. Mom and I devoured this much-appreciated gift for dinner.

March 28. Dr. Bolanos stopped us in the hall as we approached Dad’s room. She told us that Dad was very confused. He thought that he was at home and he was also having hallucinations. Also, during the night, he had gotten out of bed, and the nurses had found him on the floor when they responded to the bed alarm. To help prevent him from injuring himself, they exchanged his bed for one that could be lowered within inches of the floor. As if this news wasn’t enough, she added that Dad was argumentative and was still fighting the notion of going to rehab.

noRehabCross1When we entered Dad’s room, we encountered chaos. Dad was eating breakfast and arguing with Alisha, an aide who was trying to take his blood pressure, which was required before he could have his morning meds. He insisted that he would not take the meds, and wanted her to leave. Steve, the electrical technician, was also in the room, trying to repair a problem with a spastic call light and oversensitive bed alarm. It didn’t help matters any that Steve and a nurse were discussing the problems with the system.

I asked Alisha if she could leave so that Dad could finish his breakfast, and she agreed to come back later. As soon as she left the room, another woman entered the room. She introduced herself as Lisa, the nurse manager, and asked if we were having problems. I told her that the room had been like a sea of chaos when we arrived, which was not helping my father’s anesthesia-induced confusion or his mood. She took control of the situation and orchestrated the activities of the nurses, aides, and Steve until a relative calm settled over the room. The only challenge, which remained for a few hours, was the bed alarm and call light. Dad’s new bed did not have a built-in bed alarm and an attached call light. The nurses were using a chair alarm and the rigged-up system was somewhat faulty. I finally had Steve turn off the maddening bed alarm, promising to have the nurse turn it on when Mom and I left.

noRehabCross2Adding to the parade of people who dropped by was the case manager, who asked whether she should start looking for a rehab facility for Dad. Dad didn’t hear her question, and I quickly ushered her out of the room. Rehab was still a touchy subject, and I didn’t want us to launch into another argument in front of the case manager. I returned to the room and told Mom that she needed to see the case manager in the hall. While Mom was gone, she signed the appropriate paperwork to set the discharge process in motion. While Dad had been in surgery, I had asked Pastor Tom about Cornerstone, and he said that he thought (based on his visits to many rehab facilities) that it seemed like a good facility. We hoped that Cornerstone, which was within a couple of miles from my parents’ home, could accommodate Dad.

Mom and I had hoped to be with Dad during his next physical therapy session, but we hadn’t heard anything about today’s schedule. To ensure that we didn’t miss the session, I went to the cafeteria to buy lunch for Mom and me. While Dad enjoyed a lunch of pork chops, Mom and I ate yogurt and fruit. Dad admitted that his lunch was pretty good, which was practically an enthusiastic endorsement of the hospital food. We finally asked the nurse about Dad’s schedule, but she said that there was nothing on his chart today about him having physical therapy. With that disappointing news, Mom drove me back to the house so that I could get back to work.

noRehabCross3Shortly after Mom returned to the hospital, Pastor Tom returned for another visit. Tom told Dad how rehab had made a difference in his recovery when he broke his ankle after jumping from a plane while he was in the army. Although Tom’s words probably fell on deaf ears, I felt like we should have baked Tom a pie for trying to sell Dad on the notion of a rehab facility.

Shortly before I logged off from work, I answered a phone call from Cornerstone. Marie was calling to inform us that Dad had been accepted and that she wanted to make an appointment with Mom so that they could finalize the arrangements for his two-week stay.

Now, all we had to do was get Dad to agree to the transfer from the hospital to the Cornerstone facility.

 

Back at Scott & White Hospital. Oh, joy.

carCross1March 25, 2018. After last night’s disturbing phone call from Mom about Dad’s fall, I wanted to get an early start to Temple so that I could be there during Dad’s surgery. I was up by 5:30 A.M., called Mom 45 minutes later to let her know that I was coming, and left home at 7:40 A.M. Because of my early departure, and some good highway luck, I arrived at my parents’ home at 10:15 A.M. I quickly unpacked my car, drove to Scott & White Hospital, and made my way to room 566 in the south tower.

I had just missed the surgeon, who had stopped by to tell my parents that barring any emergency surgeries, Dad’s surgery was scheduled for that afternoon at 1:20 P.M. Shortly after I arrived, Dr. Karla Bolanos, Dad’s attending physician for the week, stopped by to visit with Dad. Dad was very charming and witty, giving her the impression that he was a cooperative patient. At this stage of the process, he actually was very cooperative because he had no idea what was in store for him.

noRehabThe doctor said that Dad would have his first physical therapy session and evaluation the day after his surgery. Following the surgery, he would remain in the hospital for 2-3 days and then move to a rehab facility for two weeks of rehab. It was at this point in the conversation that Dad balked and said that this plan didn’t work for him. He had no intention of going to rehab; he was needed at home. Unfortunately, Mom seemed to agree with Dad. In an attempt to sell my parents on the notion of rehab, I related the story of their friend Sally and her experience with rehab after her hip-replacement surgery, but my parents were not swayed.

Shortly after Dr. Bolanos left us, I left the room to call Stan and my friend Rhoda, both of whom wanted an update on Dad’s condition. On the way to the lobby, I saw the doctor at the nurse’s station and spoke with her about Dad’s diuretics, his swollen legs, and I requested that she order an infectious diseases specialist to check Dad to see if he still needed the antibiotics to suppress infection in his lungs. She appreciated knowing about the diuretics but said that Dad would need to take suppression antibiotics for the rest of his life. Furthermore, she said that he needed the antibiotics because of his new heart valve. It seemed to me that he needed the antibiotics for a couple of good reasons. Because antibiotics can affect the kidneys, I had hoped that he could quit taking them, but the doctor dashed that hope.

pegOutCross1When I finished making my phone calls, I returned to Dad’s room. Dr. Bolanos returned to the room a few minutes later and told us that they had noticed a spot on Dad’s heart that looked like a clot. Before they could operate on Dad’s hip, they would need to run some tests, which were scheduled for tomorrow. By now it was 12:30 P.M., and Mom and I were hungry and decided that we would leave Dad for an hour and go home for lunch. When we returned to Dad’s room, because his surgery was rescheduled for tomorrow, his NPO restriction had been lifted, and he was eating lunch and complaining about the food. Some things never changed.

At 3:30 P.M., an imaging tech arrived with an ultrasound machine to scan Dad’s legs for blood clots. She couldn’t tell us anything, and we assumed that we’d hear something soon from the doctor.

Shortly before 5:00 P.M., Mom and I left the hospital for home, having not seen any medical providers after the imaging tech left the room.

March 26. Mom and I arrived at Dad’s room shortly after 9:00 A.M. Dad said that he had been told that his surgery was scheduled for 1:20 P.M. Dr. Bolanos stopped by the room and told us that Dad was scheduled for a VQ scan at 10:30 A.M. I had never heard of a VQ scan, but I learned that it evaluates the circulation of air and blood within a patient’s lungs. The transportation tech arrived 10 minutes before the scheduled time and transported Dad to the procedure location. Not knowing how long he would be gone, Mom and I started getting antsy when he hadn’t returned by noon—especially because he was scheduled for surgery at 1:20 P.M. We didn’t want the surgery rescheduled for tomorrow. We also didn’t want to leave the room for lunch and risk missing the doctor.

ouchCross4Dad was returned to his room at 12:15 P.M., and a couple of minutes later, we were told that he was still scheduled for surgery today. Less than 30 minutes later, another transportation tech arrived to take Dad to the OR prep area. Mom and I were both allowed to accompany him. Dad wasn’t in favor of my coming, but I wanted to speak with the anesthesiologist. Dr. Daniel Stahl, the surgeon, stopped by to tell us about the surgery. He said that Dad would need three pins and that unless they found something different from what they had seen on the x-rays, the procedure should take less than two hours.

I told the anesthesiologist that following Dad’s previous two surgeries, he had had a heck of a time dealing with the anesthesia. For three to four days, he had been very confused and had had hallucinations of animals, insects, and water in the room. The anesthesiologist said that he had Dad for his second surgery in May 2015. He said that if this surgery lasted no more than 90 minutes, he could use a spinal tap. Dad would be aware of what was happening, but he wouldn’t have any pain, and he would not suffer the after-effects of the anesthesia. He said that he would confer with the surgeon and try using a spinal tap if we agreed that was the route that we wanted to take. He thanked me for the update on Dad’s history, and Mom and I hoped that we had found a solution to Dad’s post-op dramas. While we were speaking with the anesthesiologist, the nurses were having a heck of a time finding a vein so that they could type and screen Dad’s blood.

anotherFallCross1When the nurses had finished drawing Dad’s blood, Mom and I made our way to the OR waiting room. After waiting for about an hour in the freezing-cold room, we were pleasantly surprised to see Tom, my parents’ pastor. I don’t know how he found us, but pastors seem to know their way around hospitals. We had a nice visit with him, and during our discussion, I mentioned my concern about Dad’s reluctance to go to rehab. I hoped that Pastor Tom would be able to have a guy-to-guy talk with Dad sometime before he was discharged from the hospital. After talking with Mom, I learned that part of her reluctance to send Dad to rehab was because of the promise that my parents had made years ago to not put the other in a nursing home. I explained to her that he would be admitted to the temporary resident section of the skilled nursing facility, not the permanent resident section, commonly referred to as a nursing home. I think that she felt somewhat better about rehab after our discussion.

Just a few minutes after Pastor Tom left us, the surgeon arrived to tell us that the surgery had gone well. Unfortunately, because of Dad’s spinal compression, the anesthesiologist was not able to use a spinal tap and had to use a general anesthetic after all.

Oh, joy.

 

Thank goodness for the (relative) calm after the surgery

April 2, 2016. After staying up last night until after 11:00 P.M. following Dad’s fistula fiasco, the 4:30 A.M. alarm seemed to come just moments after I placed my head on my pillow. By the time that I had dressed and started the coffee, the light was on in my parent’s room. Dad’s incision site had bled only slightly during the night. After eating breakfast and administering meds, Mom and I took Dad to dialysis. When we arrived, he weighed 153.34 lbs., which was about 3 lbs. more than his dry weight. After getting him settled in for his three-hour session, Mom and I left for home around 7:30 A.M. When we returned to pick him up, his RN, Melissa, showed him how to find the thrill in his arm. Following fistula surgery, when you place your fingers over the fistula, instead of feeling a pulse, you feel a whooshing that feels almost like a cat’s purr. This whooshing vibration is the thrill. His post-dialysis weight was 150.92 lb.

Dad’s fistula would need to cure for a couple of months before he could use it for hemodialysis. Dad’s surgeon, Dr. Jaffers, had told him that he should check his thrill on a daily basis. If he could not feel it, he should contact his doctor, and he’d probably need surgery to repair the fistula.

calmButterflyWhile my husband, Stan, was in town, he mowed the lawn and sprayed weeds. After lunch, Dad took a nap, and Stan and I drove to the Miller Springs Nature Center near Lake Belton to find some accessible trails that Dad might be able to walk. The trails seemed a bit less than optimal and appeared to be a little damaged. I was pretty certain that Dad would have a difficult time navigating them with a cane or a wheelchair.

My lack of sleep was starting to take its toll on me, and when we returned home, I needed a nap. Fortunately, I woke up in time for happy hour. After dinner, dad was feeling well enough to play cards, and I won.

April 3. According to Mom, Dad’s incision seeped a bit more during the night. While Mom and I went to church, Dad and Stan stayed home and played cribbage. As Mom and I were walking into the church, my phone rang. It was the home-care nurse, Paula, and she wanted to come by and admit Dad into Scott & White Home Care. When our friend and nurse practitioner, Sue, heard about Dad’s ordeal with the fistula surgery, she was more than a little exercised, and she could not believe that the incision was still seeping blood. She said that “bleeding wasn’t supposed to happen.” I told her that I have hundreds of pages of documentation full of things that “shouldn’t have happened” to my father.

Because Sue had been so worried about Dad’s continued bleeding, we checked Dad’s dressing as soon as we returned home. Paula arrived at 1:00 P.M., shortly after we had finished replacing the adhesive on the dressing. Paula offered to change his dressing, but we decided to wait until we heard from Dr. Jaffers. Because she was part of the Scott & White network, she was able to email Dr. Jaffers to see how soon we could have the dressing changed.

It was comforting to have my nursing lifeline back.

calmCross1April 4. I logged on to Dad’s MyChart account at Scott & White and saw that Dad’s appointment with Dr. Jaffers had been rescheduled to a later date. At the start of his office hours, I called Patsy, Dr. Jaffers’s secretary, to see why our appointment had changed. Her phone number had been one of the numbers that I had called in response to Dad’s bleeding after the surgery. When she heard that it was me calling, she said that she was getting ready to return my call from Friday evening. I also told her about the drainage of Dad’s dressing and thought that it should be changed. When I told her that I had photographed it with my phone, she asked me to text the photo to her cell. She soon returned my call and told me to take Dad to the dialysis center and have the nurses change his dressing. To ensure that we wouldn’t encounter a problem there, I called the charge nurse to let her know that the doctor had instructed us to drop by. Dad and Mom left a few minutes later and had no problem getting Renee, one of the nurses, to change the dressing. She and some of the others there were a little disturbed about the problems that he had encountered. Unbelievably, it seems that he was the first person ever to have problems of this nature. Of course.

calmCross2This afternoon while I was working, I looked out the window and saw Dad holding the cane with his right hand and dragging a garden hose with the arm that had just had surgery. I immediately ran outside to help him. My major concern was that he might fall, but he also seemed out of breath, and then there was the issue with his arm. I got him to rest for a minute before he headed out to the garden to see my mother, who was planting cucumber seeds. It was pretty warm out, so I wasn’t wild about either them being in the direct sun.

At 4:00 P.M. I ended work so that I could download some bank statements and transaction statements for Dad. We finished at 4:30 P.M., and then I took a short walk to stretch my legs. We had a nice happy hour and watched the news before eating a tender chicken that had been stewing in a crock pot. We played cards after dinner, and my mother won. We hit the hay a little early. I did a little packing and gathering for my trip home on Wednesday, two days from now.

April 5. I was up early and had to wake Mom and Dad with the “good morning” song. They were moving a little slow but they were up and out of the house by 6:15 A.M.  When Mom returned from dropping off Dad at the dialysis center, she said that they planned to remove 3,300 ml of fluid today, but they would also add fluid, so the net amount removed would be closer to 2,000 ml. I’m no nephrologist, but I wasn’t sure why they didn’t just remove 2,000 ml.

calmCross3After lunch, Dad took a nap. He was sleeping soundly, and I had a difficult time waking him. He finally got up at 2:45 P.M., 45 minutes after I started trying to wake him. The rest of the day went well. He and I talked about dinner plans for Saturday, and I went to the store to buy him a battery and some food. After dinner, we played cards, and Mom won.

It was after dinner when the day went to Hell. It seemed to me like Dad was out of breath. Concerned, I checked his oxygen level, and it was fine, but his heart rate was 132. I had been hoping that he would start weaning himself from the wheelchair, but the more we talked, the more apparent it became that he wasn’t getting rid of the wheelchair. According to Dad, the wheelchair was the only comfort that he had. Furthermore, he didn’t trust Dr. Pfanner and thought that he’d keep coming up with excuses for not pulling Dad’s PEG tube. Dad then shared a bucketful of excuses for not walking or getting rid of the wheelchair and not exercising. When our discussion turned into a heated argument, Mom came into the room and asked what we were arguing about.

Dad seemed to be in the midst of a terrible pity party, and he couldn’t seem to see his way out. I was a little concerned because he seemed depressed. I’m no expert, but I knew that he was in pain, which probably contributed to his attitude and outlook on life.

calmCross1I was too tired to continue the fruitless conversation, and I went upstairs to bed. I could hear the television, and it was on for quite a while. Evidently, Dad went to bed late after watching Ted Cruz give his victory speech in Wisconsin. By the time he went to bed, he didn’t like Ted Cruz.

April 6. I dragged myself out of bed at 3:45 A.M. and was logged on to work 15 minutes later. Mom and Dad were up by 6:00 A.M., and I stopped work at 7:30 A.M. so that the three of us could eat Mom’s homemade banana muffins for breakfast.

At 10:00 A.M., I took a brief break from work when Kathleen arrived to administer a physical therapy assessment for Dad. Following her assessment, she said that she would put him on an aggressive rehab plan so that he could walk with or without a cane. Kristen, the speech therapist, also called this morning and scheduled a session time with Dad on Friday afternoon. I would be in Houston on Friday and was disappointed that I wouldn’t get to see her.

I called Dr. Pfanner’s office and tried to get a straight answer from his nurse about whether or not Dad needed to take another MBSS before he could have the PEG tube removed. After not getting a straight answer, I emailed her again and restated my question in writing.

calmCross2I left Temple for my home in Houston at 12:43 P.M. and arrived home shortly after 3:30 P.M. I was pretty tired for the last 40 minutes of the drive and forced myself to stay awake. Stan got home from work about an hour later.

It seemed like I had been gone for quite a while, and it was good to be home again with Stan and our cats. Stan fixed us a nice dinner of turkey breast, and it was moist and yummy. After dinner, we made reservations for our trip to Wisconsin this September. My friends had surprised me with a girlfriend trip to Wisconsin to celebrate a milestone birthday last year, but my father’s situation had required a postponement of our plans, and this trip was our time to get together at last.

April 7. Because I would be working from home today, I was able to sleep in until 4:00 A.M., and lounge around and watch the news until 5:30 A.M. I finally got to my home office above my garage at 6:00 A.M., close to the time that Mom and Dad were on their way to the dialysis center back in Temple.

calmCross3Back in Temple, Dad had 1,800 ml of fluid removed during dialysis and his nurse also removed his dressing. Sue, the dialysis nurse practitioner and our friend, had been very concerned about Dad’s progress and stopped by to ensure that his fistula was healing well.

I worked until 5:00 P.M. and then called Mom for a quick update on their day. After Dad’s nap, they spent quite a bit of time outdoors in their garden, planning a drip line. When I called them, they were watching the news and enjoying happy hour.

After I spoke with Mom, I set up an account with WordPress so that I could begin sharing Dad’s story, a story that I hoped would be ending soon.

 

 

 

At last: Fistula surgery day has arrived!

March 29, 2016. Today was a busy day. Mom and Dad were up early to get Dad to dialysis, and it was a full work day for me. At 8:15 A.M., I met Mom at the King’s Daughters clinic for her appointment with her PCP, Dr. Poteet. In reviewing Mom’s chest CT scans, the doctor said that a spot was visible on her CT scan and showed that she had some scarring in a few lobes. He thought that she might have a chronic infection (bronchiectasis). He wasn’t sure, but he thought that she might need a bronchoscopy to get an accurate diagnosis.  He referred her to a pulmonologist at Scott & White. Because King’s Daughters and Scott & White could not share files, he told her to go to the King’s Daughters Surgery department and pick up a CD of her CT scans, which worked out well because I also had to pick up a CD of Dad’s CT scans. When I returned to the house, I called Scott & White and made an appointment with Dr. Mike Martin for Dad. Our friend, Sue, had recommended that we use Dr. Martin as a PCP for Dad. The earliest appointment I could get was April 25, almost a month from now.

surgeryCross3I spoke with Dana and then Julie at the Scott & White Speech Pathology department about my concerns about Dad’s surgery and the anesthesia. Julie spoke with Dr. Kyla Sherrard and told me that during recovery he’d have to drink some water. If he couldn’t handle it, the issue would be escalated to their department. She added that they would have a dysphagia screener in recovery. I ended my call with them feeling a little bit more prepared. It seemed to me that everyone involved with speech pathology was a rock star. From the person who answered the phone, to Dr. Sherrard, and all of the therapists, they all seemed all in for their patients.

March 30.  Not so busy as yesterday. After Dad woke from his afternoon nap, Mom drove him to the barber for a haircut. This barber had been in business for many years and knew most of the movers and shakers in Temple. Temple had more movers and shakers than one might think. Drayton McLane, the former owner of the Houston Astros, lives there. Probably more so than in a salon, gossip and stories were shared in the barber shop. Since Dad’s return home, Dad had shared some stories of his journey and news about his upcoming surgery. While Dad was there, his barber gave him the name of his surgeon.

surgeryCross2A few days ago, Dad and I had created a recipe for ham loaf, and tonight we prepared it for dinner. Dad also wanted carrots for dinner, and I found an interesting recipe in Mom’s cookbook. My parents had had a good friend who used to serve us ham loaf every time we ate at her house. Mom had never prepared it, and Dad and I were anxious to see if we had created a dish that she would like. Dad and I liked it, but it was a bit high in sodium, which wasn’t good for Dad. We decided, and Mom agreed, that it would be a good use for leftover ham.

March 31. Dad had an uneventful start to the day.

During my one-on-one meeting with my manager, she told me that she was contemplating taking a position with a different business unit in the company. I hated the thought of her leaving. We had a good working relationship, and I considered her to be a friend.

It was a beautiful afternoon. Mom and Dad took a walk out to the garden and then sat on the patio. I fixed our drinks, and we had our happy hour outside until 5:30 P.M. We finished watching the news before Mom and I started to fix dinner. Because we got a late start on dinner, we opted for a simple meal, like leftover meatballs and baked beans.

surgeryCross1We played cards after dinner. Mom and Dad went to bed early so that they would be well rested for Dad’s fistula surgery tomorrow. When I went to the office to shut down my computer, I became distracted with work and didn’t get around to calling Stan until after 9:00 P.M. This time might not seem late, but whenever I deviated from my schedule—calling later or earlier—my husband was concerned that something was wrong. Living on pins and needles had become our new normal.

April 1. I was part of the decision-making process to choose this date, but now that it was here, it seemed that April Fool’s day wasn’t a good day for surgery.  I was up at my regular time and ate breakfast at 4:00 A.M., about 30 minutes before Mom and Dad woke up. Mom ate a small breakfast, but because he would be having surgery in a couple of hours, my father was NPO.

surgeryCross3We left home for the hospital at 5:30 A.M. in a drizzly lightning storm. We arrived at the Day Surgery waiting room and admissions area a couple of minutes after 6:00 A.M., just beating the morning rush at the check-in desk. Dad was admitted, and we were on our way upstairs to Day Surgery before 6:30 A.M. The nurses and anesthesiologist were great, and they took time to listen to my concerns about Dad’s history of dysphagia and aspiration. I wondered how many people I pestered in my quest to ensure that Dad came through this surgery without any post-op challenges or relapses.

When the nurse wheeled Dad to surgery at 7:30 A.M., Mom and I returned to the waiting room. As usual, the waiting room was unbearably cold. While we waited, I took a few walks around the hospital. It’s a big place, and as much as I hated being here, I was in an environment that had become familiar.

When we arrived in the waiting room, the scheduled time of Dad’s surgery was 2:55 hours, and that time turned out to be accurate. Dr. Wiggins, Dr. Jaffers’s resident, called a couple of times during Dad’s surgery to let us know that everything was proceeding well. When the surgery was over, Dr. Jaffers met with us in a consultation room and told us that the surgery had gone well and gave us some instructions for Dad’s post-op care. As he left, the doctor told us that Dad would be in recovery for about 90 minutes. Mom and I decided to use that time to go home so that we could change into some warmer clothes and eat a hot lunch.

surgeryCross2As we pulled out of the driveway to return to the hospital, I received a call on my mobile phone that Dad was out of recovery and waiting for us in Bay 33. When we arrived, his nurse, Danielle, was giving him pudding and water. His dressing seemed pretty bloody. Danielle said that she had changed it once, but she thought that the bleeding had now stopped. She didn’t seem inclined to change it again, and for reasons that I’ll never understand, I didn’t ask her to change it. While we waited for the transportation personnel to take Dad downstairs, Mom helped Dad change out of his hospital gown and into his street clothes. After we arrived home at 2:00 P.M., Dad ate some Cream of Wheat, and then took a nap. I was relieved that he seemed to have come through the surgery unscathed and that my concerns had been unfounded.

Mom ran some errands, and I logged on to work while Dad napped. I woke him at 4:15 P.M. when Mom arrived home from shopping. As soon as he sat up, it was evident that his bleeding had not stopped. I was alarmed when I noticed that his shirt was soaked in blood and that the bedspread held a pool of blood. I cursed myself for not insisting that Danielle change Dad’s dressing so that we could have been certain that the bleeding had stopped before we left the hospital. I started calling numbers on his discharge papers until a human answered the phone. Wanda told me that I should call a different number, but I told her that she had been the only person who had answered the phone, and hers was the last phone number on my list. I took a deep breath as she told me that bleeding from the fistula was a serious problem and that the bleeding had to be stopped. While she put me on hold, she started working the problem and then told me to bring Dad to the emergency department. She would call Dr. Jaffers and have his resident meet us there. Fortunately, Dr. Jaffers was still at the hospital performing similar surgery.

surgeryCross1Before we left the house, Wanda called me and said that we should bring Dad directly to the Day Surgery department on the second floor. When we arrived, the nurses couldn’t understand why we were there and told us to go to the waiting room on the first floor. As we entered the waiting room, we saw a familiar face. Sheila, who had been our contact at Interim Health Care (the hospice company that we chose for Dad), was waiting for her nephew to get out of surgery. She was one of the nicest people that you’d ever want to meet, and she commented on how glad she was to see Dad’s continued progress, which was a far cry from hospice.

After we were directed back upstairs to the Day Surgery department, Dr. Wiggins checked Dad’s incision site and applied a new dressing. She said that Dr. Jaffers wanted her to look for any signs of hematoma to determine if they needed to take Dad back into surgery. At this time, the bleeding had slowed, but not stopped, and Dr. Wiggins had Dad sign another surgery consent form in case more surgery was required. She tightened the dressing to apply pressure for about 40 minutes and then removed the pressure for 30 minutes to see if the bleeding would start again. I was concerned about Dad having to return to surgery because he had eaten just a few hours earlier. Fortunately, I guess, Dad vomited some of his lunch during our hour of waiting. The vomiting might have been caused by the anesthesia and was the only time that he was sick today. When Dr. Jaffers returned to the waiting room, he examined Dad’s incision decided that additional surgery wasn’t necessary.

surgeryCross2As I pulled the car into the driveway, a chime from my iPhone alerted me to an incoming text message. The text message from Stan informed me that he was in Cameron, about 30 miles from my parents’ home. He walked into the house while Mom and I were unwinding with a late happy hour. We served more of the ham loaf for dinner and finally got to bed at 11:00 P.M. For my peace of mind, I put the monitor back in my parents’ bedroom for this one night. I wouldn’t be able to sleep if I spent the night worrying about Dad.

This had been another danged long day of health care, and I hoped that Dad’s days of surgery were over.

Rest stop on the road to recovery

January 17, 2016, marked the 255th day of my Dad’s healthcare odyssey. Now seemed like a good time to take a timeout to review some of the major challenges of his journey. Also, I’m taking a bit of a timeout myself to prepare for Christmas 2017. I’ll continue with Dad’s healthcare story in my next post.

 

 

 

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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