What’s next, flying monkeys?

November 24, 2015. Dad and Michell woke up at 4:15 A.M. Dad still had some problems overnight, but I hoped to have him on the road to recovery quickly. I had Michell administer the trach care again this morning. I had to assist her a couple of times, but she was a little less nervous than she had been during her first attempt last night. During the administration of Dad’s morning meds, I added a couple of crushed Imodium tablets. Dad and Michell were able to get ready without much difficulty.

flyingMonkeyKristin, Dr. Pfanner‘s nurse, called to tell me that the doctor had decided on an antibiotic for Dad that would take a couple of weeks to clear up the CDiff. The nurse also provided me with some guidance about laundering and cleaning anything that Dad had come in contact with. She also recommended that we purchase some isolation robes to protect ourselves and encouraged us to wear gloves. I told her that we would abide by her guidelines, but it sure seemed like the horse was already out of the barn. Dad had probably been sick with CDiff for several days. Because prolonged antibiotic use probably contributed to Dad’s CDiff, before hanging up, the nurse encouraged me to contact Dad’s pulmonologist to see if they would change his antibiotic. This was a difficult request. We weren’t going to meet Dad’s pulmonologist for a few weeks. I also thought that it was the infectious diseases doctor at the hospital who had prescribed the doxycycline, and I didn’t know when or if we would see her again.

I thought that the dialysis nurses should know about the diagnosis. I texted Sue, our friend and nurse practitioner at the dialysis center, to let her know that Dad had tested positive for CDiff.

flyingMonkeyWhen Dad and Michell returned home at 12:15 P.M., Dad was in a rush to get to the bathroom. As I was pushing him past the piano, I caught his hand between the wheelchair and the piano and gouged him good. His skin was very fragile and susceptible to tears, so now he was also bleeding. Because I had already helped enough, I left the chaos that I had created and drove to the pharmacy to pick up the antibiotic prescription. I returned around 12:30 P.M. and gave Dad his first dose of Flagyl. When I had a couple of minutes to talk with Michell, she told me that Dad had had 1,100 ml of fluid removed during dialysis. With his weight so low, this news wasn’t good, but at least the quantity wasn’t excessive.

It was Thanksgiving week, and I was working half days, starting at 3:45 A.M., so my day was over by the time that Dad returned from dialysis. Michell, Mom, and I ate lunch, and then I resumed the baking that I had started yesterday.

flyingMonkeyAt 4:00 P.M., Mom tried to wake Dad, but he just grunted at her. He finally responded when she told him that he had his head on his sore hand—the one that I had injured. He then tried to get up by himself to go to the bathroom, which he’s incapable of doing. Michell tried to help him, but he told her to get out of his way. She finally got him into the wheelchair, and he kept telling her (and now me) to get out of his way. Michell kept trying to help him, but he kept shoving her away. She then got him the walker, but he pushed it into me and told me to get out of his way. During the arguing and raised voices, he called me by my mother’s name a couple of times, which I found a little disconcerting. He kept insisting that he could walk by himself. I finally stepped back and told him to walk. It took him about one second to realize that he couldn’t walk, and then he let us help him, although he still didn’t seem like himself.

In addition to the drastic personality change, he woke up looking different and years older than he had just four hours earlier. I checked the printout of precautions and side effects that came with the meds, and a couple of the severe side effects included confusion and irritability. I called Dr. Pfanner’s office and talked to the nurse about his drastic change and our concerns, and she said that she would consult the doctor and call back. When she called a few minutes later, she said that we wouldn’t like the answer, but the doctor wanted us to take him to the ER.

And then it got crazy.

When I called 911, I told them about Dad’s symptoms, and mistakenly used the word aggressive to describe his behavior. The 911 operator then started asking questions about weapons and alcohol and drug abuse, but I assured him that we didn’t have those concerns. Before hanging up, the 911 operator asked whether I felt safe hanging up the phone. I assured him that I did and made a mental note to never use the word aggressive during a call to 911.

flyingMonkeyJust a few minutes later, I heard the sirens, and a black SUV belonging to the sheriff’s department turned into the driveway. The deputy told me that the sheriff’s department is called whenever 911 receives a psych call. I assured him that I had not placed a psych call and that my father did not pose a physical threat to us. While we were talking, the deputy spoke into his shoulder mic and told two other deputies to “stand down.” Moments later the first fireman from Little River-Academy arrived. A couple of minutes later, the ambulance arrived, followed by another Little River-Academy fire truck. The EMTs, deputy, and I chatted on the front porch about Dad’s willingness (or not) to go with them. They asked about Dad’s wife and whether either of us had medical power of attorney, which we both possessed. The entourage of deputies and EMTs followed me into the bedroom, and I was able to talk Dad into going to the hospital. Michell rode in the ambulance with him and Mom and I followed them in my car. We sat in the driveway for what seemed like 10 minutes before the ambulance finally pulled out of the driveway. We finally arrived at the hospital at 6:00 P.M.

EMTs take the patient into the hospital through a designated door, separate from any visitors, including those who ride in the ambulance. I parked the car and Mom and I met Michell in the waiting room. While Michell left us to find a restroom, Dad, Mom, and I were ushered into an exam room. When the nurse arrived, I told her about the events of the day. When the resident, Dr. Stephanie Katrin Clark, arrived, said that Dad’s mentation problems could be from the CDiff and not the meds. She then ordered a chest x-ray to see if the lack of lung capacity was causing his confusion. She also ordered an EKG. Finally, the nurse arrived to take Dad’s blood. It was then that we learned that the reason why Dad’s ambulance stayed in the driveway so long was that the EMT was starting an IV. Having an IV in place simplified the nurse’s task, and she quickly acquired the necessary samples and turned them in to the lab shortly before 7:50 P.M. Before the nurse left the room, she started Dad on a saline drip.

At 7:49 P.M., I texted Sue to inform her that Dad had had 1,100 ml removed this morning and that he was now in the ER getting 500 ml of saline. I didn’t know if she could provide us with any information that might help our situation.

flyingMonkeyA little over an hour later, Dr. Clark returned to the exam room and said that she wanted to admit Dad. She said that his blood pressure was soft and he seemed dehydrated. I told her that we had to be home tomorrow for his 60-day home-care assessment. She said that she would give him another 250 ml of saline to improve his blood pressure. The next thing I knew, a tech arrived and said that she was to take Dad to radiology for a CT scan. I told her that it was our understanding that Dad could leave after he had received the 750 ml of saline and that I didn’t want him to have a CT scan. I also told her that he was out of Medicare days (and S&W Senior Care days), so admitting him was out of the question. After the tech had left the room, I explained to Dad and Mom that Dr. Smith had told me that Dad’s CT scan in August had not been normal, but he had then added that the CT scan of someone his age wasn’t normal anyway. I didn’t trust this doctor to say that the results of a CT scan weren’t normal, which would be another reason to admit him.

Shortly after the radiology tech left the room, we heard a knock on the door and a woman entered, identifying herself as the social worker and a problem solver. I again explained why we had to go home. My argument didn’t seem to sway her, so I told her that Dad was uninsured and that unless she could pay his hospital bill, I wasn’t interested in anything that she had to say. She left the room and returned a couple of minutes later with Dr. Clark and with the charge nurse. The doctor then informed me that Dad had suffered a heart attack. Today would mark the second time since July 22 that I had heard this, and I suspected that she was no more correct than the previous doctor had been. When I pressed her for details, she said that his numbers were elevated so that he might have suffered a heart attack. She also said that his kidney function was very high and that according to his medical history, he was very sick. I explained that his kidneys were in terrible shape and that he was ERSD and on dialysis. One of our problems was that the Scott & White Home Care department was not on the same records program as the hospitals, so the latest information accessible to the medical staff at Memorial was from September 29, some 57 days ago.

flyingMonkeyThe social worker and charge nurse explained to us that to take Dad home, we would have to sign an AMA, which would ensure that he could not be recertified. They had effectively trapped us into a no-win situation. We didn’t trust them or the hospital, and even if we did, Dad was uninsured, and we had to get out of there. I told them that I wanted to make some phone calls. I called the Home Health after-hours phone number and told them about our situation. I was transferred to Leo, the night nurse who had originally admitted Dad into home care. My phone died, and when I used Mom’s phone, Leo and I kept getting disconnected. When the nurse returned to the exam room, we told her that we would sign the AMA so that we could take Dad home.

At 10:38 P.M., I texted Sue again and told her that Dad had been dehydrated and that we might need to rethink the amount of fluid we’re pulling off of him, especially when he has diarrhea. At the rate that he was receiving fluids at the hospital, it wouldn’t be long before they replaced everything that had been removed during dialysis.

Eventually, the nurse came back, and my mother told her that we were ready to leave. After we signed the AMA, the nurse removed the IV lines and called for an ambulance to transport Dad home. About 30 minutes later, the EMTs arrived with a gurney. Mom and I recognized both of the EMTs. One of them had been by the house several times and the other, a woman, had brought him home from dialysis earlier today. When the EMTs took Dad to the ambulance, Mom and I passed through the waiting room, where we found Michell, who had been waiting patiently for almost five hours. Michell quickly left the waiting room and joined Dad for the return ride home in the ambulance. Fortunately, we had been able to text with Michell, so she had some idea of what was happening.

The four of us finally arrived home around 11:15 P.M. I started cleaning up in the kitchen and toasted the biscotti that I had baked earlier. We were hungry and too wired to sleep, so Mom also prepared a plate of cheese and crackers. Michell was with Dad in the bedroom. The poor guy was suffering from CDiff and had been trapped in the ER for more than five hours.

flyingMonkeyAt 11:45 P.M, we heard a loud pounding at the door. I peeked around the corner to see if I could tell who was at the door and was momentarily relieved when I saw the uniform of a sheriff’s deputy. When I opened the door, I met Deputy Ryan Blankemeier. He said that his department had received a call that we had taken Dad home from the hospital too soon and he was here to ensure that my father was OK. Deputy Blankemeier looked pretty confused when I told him that it was the nurse at the hospital who called for the ambulance to transport Dad home.

I told the deputy that Dad was on the commode and that he would have to wait until Dad was decent. From where we were standing in the hall, the deputy could hear Dad and Michell talking. After a while, the deputy said that he felt like he could leave, but I insisted that he stay. Eventually, Dad was decent, and I escorted the deputy to the bathroom to see him. I told Dad that the deputy wanted to ensure that he had gotten home OK. He said that “she” got home OK. I told Dad that it was him that the deputy cared about, and Dad said that he was fine, but it was “touch and go there for a while.” Dad laughed, and the deputy smiled. I eventually escorted the deputy to the front door shortly after midnight.

It was well after midnight before Dad was in bed and approaching 2:00 A.M. before I got to bed.

I hadn’t realized how upset Michell had been about the day. I had mentioned in an earlier post that she was astonished when I openly disagreed with a doctor. To sign an AMA and bring Dad home, followed by the visit from the sheriff’s department, was just a bit too much for her. After Dad had gone to sleep, she called a friend and cried about the day and then cried herself to sleep. At this point, she wasn’t sure if she would return next week and would have to pray for guidance. I hoped that she said a prayer or two for all of us.

The diagnosis

November 21, 2015. Despite the howling winds that blew through town overnight, I slept well, waking up only a couple of times when I heard Dad coughing. I got up early and woke Dad and Michell shortly after 4:00 A.M. Dad woke up slowly and had another difficult morning. I administered another dose of Imodium in his G-tube, along with his morning dose of Midodrine, which would help raise his blood pressure during dialysis. Michell and I also had the fun task of collecting a stool specimen that we had to drop off at the dialysis center.

diagnsisLetter-dWhen Michell and Dad were picked up by the EMS wheelchair van service, Stan and I drove to the dialysis center. I had been very upset that they had removed 2,500 ml from Dad on Thursday, and I intended to express my concern to the charge nurse. For each 1,000 ml removed, a dialysis patient loses 1 kg. After I had explained Dad’s situation, she said that they would just clean his blood today and not remove any fluid from him.

I remained at the dialysis center with Dad until he was weighed, which would determine his wet weight. Instead of gaining weight since his last session, which is what typically happens with dialysis patients, he had lost weight. He now weighed 128 pounds, five pounds less than his dry weight on Friday. Although two dietitians were now monitoring his nutrition, I was very concerned about his weight. I know that Michell was concerned when she learned how much the nurse planned to remove, she didn’t feel that she was qualified or entitled to question their judgment.

diagnsisLetter-iAfter I saw Dad weighed, Stan and I left Dad and Michell at the dialysis center so that we could run several errands before Dad returned home. Everything worked in our favor, and we were home by 10:30 A.M. As it turned out, Stan and I didn’t have to rush. Dad and Michell had to wait for the van and didn’t return home until after noon.

As soon as he got home, I administered Dad’s trach care and meds. Following dialysis, Dad usually was ready for a nap, but not today. During the storm last night, we had wind gusts up to 40 MPH that ushered in a cold front, and we lost a roof shingle. As soon as I was finished with Dad, he was ready to discuss with Stan how to replace the shingle.

diagnsisLetter-aShortly before 2:00 P.M., Dad took a long nap on the couch while we were in the living room because he didn’t want to be away from us. I think that he thought that sleeping on the couch would ensure that he didn’t miss happy hour, but he slept through it. Dozing on the couch might not seem like a big deal, but it was another first for him in his post-hospital life. We had to rely on the oxygen tank and trach bib because we couldn’t bring the oxygen concentrator and nebulizer to the living room, but he was able to receive Nepro during his nap. He slept for about four hours, and we woke him when we finished dinner.

We played cards again, and Stan was tonight’s winner. Shortly after 8:30 P.M., we started our bedtime routine, and by 9:10 P.M., I was heading upstairs. I had been concerned that, after sleeping for so many hours today, Dad wouldn’t be able to sleep, but he was snoozing before I left the room. Since lunchtime, I had been feeling like I was coming down with a cold, so I took some Nyquil before bed. Even if it didn’t help fend off a cold, it would help me sleep.

diagnsisLetter-gAt 10:30 P.M., the baby monitor station in our room started alarming. After quickly putting on my glasses, I could read the message on the display that indicated that our station was unlinked from the base station. As I tried to turn on the light, I discovered that the power was out again, which was why the monitor was unlinked. I called the power company, whose phone number was now stored on my iPhone, and listened to the recorded message stating that the power would be restored by12:30 A.M. I went downstairs and checked on Dad and Michell. Although the baby monitor alarm was also sounding in their room, it was the silence of the oxygen concentrator that first woke Michell. When I entered the room, she was setting up an oxygen tank next to Dad’s bed. I called the power company again, and the recording had been changed and now stated that they didn’t know when the power would be restored. The power came back on at 3:30 A.M. as Michell was replacing Dad’s empty oxygen tank.

November 22. After the interrupted night’s sleep, I finally woke up when I heard Michell telling Dad that it was 6:00 A.M. When I entered the master bedroom, my first thought was that Dad seemed as sleepy as I felt. However, his movement seemed unnaturally slow. Right after he finished washing his face and brushing his teeth, Michell checked his oxygen saturation level, and it was 74%, a severely low level. I then noticed that I didn’t hear the soft hissing sound from the oxygen tank that I heard when the oxygen was flowing. When I checked the tank, the valve was in was in the off position, which surprised Michell. She was sure that it had been on and thought that Dad must have leaned against the key and turned it off. We quickly put him back on the bed, removed his speaking valve and gave him unobstructed oxygen from the concentrator and nebulizer. After 30 minutes, I still wasn’t happy with his oxygen levels, so to rule out any chance of an obstructed airway, I changed out his trach. For the past couple of weeks, we had been slowly reducing the amount of oxygen that we administered from the oxygen tanks and his oxygen saturation levels had remained high. I now decided to increase his oxygen level back to two liters, which is where it was when he was discharged from the CCH almost two months ago.

diagnsisLetter-nBy 8:00 A.M., Dad was back in the wheelchair and was reading the Sunday newspaper. When Mom and I left for church, he and Stan were playing cribbage. After a couple of games of cribbage, Dad wanted to lie down and rest. According to Michell, he fell asleep as soon as his head hit the pillow. Usually, he liked for us to wake him before Stan left for Houston, but today he asked that we let him sleep.

We finally woke Dad and helped him out of bed shortly after 3:00 P.M. He was up for the rest of the evening, and Michell was able to get him to run through some of his swallow-therapy exercises. Dad rested in his room again while we ate dinner, and he was ready to play cards when we were finished eating. By 8:20 P.M., we were finished with cards and starting our nighttime routine. Less than 25 minutes later, we had finished administering the meds and trach care, and Dad was sound asleep.

diagnsisLetter-oNovember 23. Dad was very slow in waking up this morning. When I heard him and Michell talking, I took a break from work to administer his morning meds and trach care. Tracy, one of our RNs, called around 9:00 A.M.to see if we could be her first stop this morning. I was very low on the Mepilex dressings that American HomePatient didn’t provide and asked Tracy if she could bring me a few to tide me over until I could order more from Amazon. She said that she would stop by the office and pick up a couple for me. I was very fond of Tracy. She was a wonderful nurse and the mother of a special needs child. She was one of my favorite nurses and a very caring person. She arrived at my parents’ home at 10:00 A.M. with my requested dressing in hand. After her brief examination of Dad, she said that his bed sore was practically healed. With the way that Dad had been feeling, I didn’t want to take him back to the wound care doctor, which would most likely take the entire afternoon. She said that I could safely cancel his appointment with wound care today. Also, she didn’t think that I would need any more of the expensive Mepilex dressings. I happily accepted the good news and canceled the appointment with the doctor and the EMS wheelchair van service.

diagnsisLetter-sWhile Tracy was visiting, Dad spent the entire time either sitting or lying on the bed, so she didn’t see how weak he had become. Shortly before Tracy arrived, Michell had had to hold up Dad to keep him from falling when he was trying to get dressed. I hoped that we would hear something soon from Dr. Pfanner’s office.

I contacted Kathleen, the physical therapist, to see if she could come over today to take care of Dad’s 60-day assessment for Medicare. As part of the assessment, the Scott & White Home Care providers would recommend an additional 60 days of home care. Unfortunately, because the health care providers can’t perform their assessments more than five days before the assessment due date, which was this coming Saturday, the earliest that she could stop by would be Tuesday, which was a dialysis day. According to Kathleen, the therapists and the nurse would arrive on Wednesday to perform their assessments. After a couple of phone calls, she and I decided that to avoid a massive traffic jam of providers, she would conduct her assessment on Thanksgiving Day. I was impressed how everyone was willing to work on and around one of the biggest US holidays of the year. For us, every day had become basically the same, but these people all had families and lives outside of work. My only concern had to do with Dad’s diminishing strength and that he might not be able to exhibit progress during his assessments.

diagnsisLetter-iShortly before noon, Michell helped Dad with some of the exercises prescribed by the occupational therapist and then she, Mom, and I helped him walk from the kitchen to the bedroom.

Kristen arrived at 2:15 P.M. for Dad’s speech therapy session, but he was sleeping. I had thought that we would not see any of the therapists until next week, but Kristen said that she was not part of Kathleen’s team, plus, she had just started treating Dad. To enable Dad time to wake up, she said that she would visit with her next patient and return in about 90 minutes. She returned shortly before 4:00 P.M., and she and Dad had a good session.

I worked only a half day today and ended the day around the time that Dad woke up. I retired to the kitchen and baked a couple of batches of biscotti. I needed to get my annual baking underway, but I felt guilty for baking something that Dad liked but could not eat. It didn’t help that the aroma of the biscotti wafted throughout the house.

Late in the day, Dr. Pfanner’s nurse called and said that Dad tested positive for CDiff. She and I discussed some antibiotics that he could take for it, but she would need to consult with the doctor and get back to me. Evidently, Dad’s G-tube was causing them to rethink which medication to prescribe. It was ironic that this infection was probably caused by Dad’s long-time usage of antibiotics, yet it would take another antibiotic to get rid of it. It was terrible that he had contracted this infection, but at least we knew why he had had this terrible diarrhea and that he would soon have medication to treat it.

diagnsisLetter-sI would need to leave town again for a day or two in early December. I had asked Michell if she would consider administering trach care and the meds while I was gone. I told her that Gale had performed these same tasks while I was gone a couple of weeks earlier. Michell had worked in nursing homes before she took a position with One On One Personal Homecare Services. In nursing homes, she would not have been permitted to perform either of these tasks. The rules of home care were at the discretion of the home care providers, namely me. I encouraged her to speak with Gale to see how she had managed. Truth be told, Michell had already performed tasks here that would have been off limits for her in a nursing home. Fortunately, Michell said that she would agree to be trained by me and give me her final decision after she had a chance to speak with Gale. During our nighttime routine, I showed her how to administer the trach care. She was nervous, and it would take a bit more practice with her, but I had to give her credit; I don’t know if I would have been willing to assume responsibility for the trach care had I been in her shoes.

 

Derailed on the road to recovery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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