December 2016 – Tale of Two Parents

100 days and counting

Published on December 29, 2016 by mellowdee552 Comments

August 12, 2015. Mom and I arrived at Dad’s room at 7:45 A.M. Dad was on a four-hour conventional dialysis trial to judge his tolerance. I freaked out when I saw that his feet were elevated above his head. During dialysis, patients who suffer from hypotension often have their feet elevated above their heads to their increase blood pressure. With his history of aspiration, that practice could not be applied to him. Olga, his nurse and the one who had elevated his feet, responded to my outburst and raised his head.

After Olga had repositioned Dad, I asked her about his morning lab results. I was thrilled to learn that his WBC count had dropped further and was now at 11.3. A normal WBC count seemed within sight!

Mom’s birthday was in four days, and we were anticipating that Dad would be at home when we celebrated his birthday on October 6. I thought that we should have a four-tier birthday cake on Dad’s birthday—one tier for each of the birthdays we missed celebrating this year. Dad seemed to brighten up at idea and indicated that he wanted chocolate, Mom wanted carrot cake, I wanted rum cake for my layer, and I decided that Stan wanted apple cake.

During rounds, we met the new attending physician, Dr. Shekhar Anant Ghamande. He said that Dad was progressing and that things were getting better, but that Dad needed some exercise.

Dad was a bit difficult to handle. He kept trying to talk, which was impossible, and he refused to use the letter board to communicate. Other than learning that he wanted chocolate cake for his birthday, we had no successful communication with Dad.

The conventional dialysis trial, which Dad completed without much difficulty, was over at 1:15 P.M. Dad was moved into the cardiac chair, but he would not put his feet on the chair’s foot stand. Without his feet on the foot stand to stop him from sliding off the chair, the nurse had to reposition him in the chair every few minutes. Mom left the room for a few minutes and when she returned, she heard singing coming from Dad’s room. While she had been away, a Catholic nun from the hospital’s chaplain office had stopped by to see Dad. With Dad’s refusal to use the letter board to communicate, I couldn’t imagine how they communicated.

Dad tired of sitting in the chair and wanted to get back into bed. The nurse had left the room to find someone who could help her, but while she was gone, an ultrasound tech arrived and spent about an hour checking Dad’s legs and arms. The nurse later said that by the time that the tech left the room, Dad was as inspired to transfer back into bed as she had ever seen him. We never did learn about the purpose of the ultrasound, but at least a couple of us were glad for his extra time in the chair.

When Mom and I returned to the hospital after dinner, we were pleased to see that Dad was sleeping and that Tyler was his nurse again. It was the first day in many days that I could tell Stan that we had had a good day today.

August 13. As Mom and I drove to the hospital, we realized that Dad was starting his 100^th day in the Scott & White institution. We arrived at the hospital at 7:35 A.M. Dad was restrained, but I quickly removed the soft restraints.

Dad was all hot and bothered to get out of the bed at 7:45 A.M. Anna, his nurse, was pretty busy, so we had to wait until 9:45 A.M. to get him into the chair. During Dad’s initial stay in the ICU, he hated the uncomfortable chairs, and practically fought to stay in bed. Mom and I were glad that he now wanted to get out of the bed.

At 10:00 A.M., Travis and his entourage of occupational and physical therapists stopped by to exercise Dad. They stood him up from the chair and onto the floor. Dad’s legs would not straighten out, but he was able to kinda sorta stand, with some assistance. The therapists worked with him for about 10 minutes, moving his arms and legs. Cardiac chairs are designed to take patients from a recumbent to a sitting position. You don’t usually step out of or into a cardiac chair. Getting Dad resituated into the chair was a real struggle for the three therapists, but they eventually succeeded.

Mom left the room to call April Jones, the nurse manager at the CCH, to see if she could make an appointment to meet with April next week. We had not been thrilled with our previous experience with them and wanted a better relationship the next time. Mom wanted to start working on that now.

While Dad was in the chair, Michelle, the dietitian, had stopped by for one of her routine visits. In addition to her usual concerns about Dad’s nutrition, she was now concerned about the extended use of antibiotics and how they could affect his digestion. She said that she would suggest that the doctors consider starting him on probiotics. I don’t know if they ever did add probiotics to his daily regimen of meds.

After Dad got back into bed, he slept for 10 minutes and then woke up and started worrying the bed linens and pulling on his lines and trach tube. Dad seemed to be having lots of secretions, and he seemed to be struggling to breathe. Nikita, the respiratory therapist, happened to walk past the room as he was having breathing problems. She said that Dad had been on CPAP since 7:00 A.M. She thought that it was time to give his lungs a break, and switched him back to BiPAP support shortly before we left for dinner.

Mom and I returned to the hospital at 6:40 P.M., just prior to the shift change. The big pleasant surprise for us was that Andrea was Dad’s night nurse. She had been his nurse for the first three days when Dad returned to Memorial, and Mom and I loved her. When we first met her, Andrea had mentioned that she usually liked working nights, and we were glad to see her again and assigned to Dad. She commented on how much Dad had improved since she had last seen him 19 days earlier.

Mom and I stayed with Dad until about 8:00 P.M. On the way out of the hospital, we walked over to the Cardiothoracic Intensive Care Unit (CTICU) in the north tower, which was where Dad stayed during his first stint at Memorial. In addition to seeing a couple of the nurses we knew, we were enthusiastically greeted by a nurse we didn’t remember. Mom and I were really touched by the outpouring of support that we received from some of the caregivers in CTICU. Today had been another pretty good day, and we left the hospital at 8:15 P.M., feeling like Dad would have a relatively good night.

nursestation — View of nurses’ station from Dad’s room

August 14. Mom and I arrived at the hospital at 7:45 A.M. to find that again Dad was restrained. Evidently, Andrea had had to restrain him about four hours earlier because he was trying to pull out his trach tube and PICC line. As I had done for the past few days, I untied Dad’s restraints. Almost immediately, Christine, his nurse, reprimanded me for removing his restraints and reminded me about the importance of restraints and notifying the nurses, and blah, blah, blah. I had a pretty good relationship with most of the nurses and caregivers, and they knew that we were a constant presence in Dad’s room. It wasn’t as if Christine had never laid eyes on us. Dad’s room was right in front of the nurses’ station. While I understood the importance of the restraints for patient safety, I was annoyed at the cavalier attitude that some nurses seemed to have about them. As far as I could tell, restraints were used because the hospital could not assign someone to watch him. Wouldn’t you think that a nurse would ask family members if they would or could stay with the patient so that they could remove the restraints? My father wasn’t unconscious; he knew that he was tied to the bed. Who in the world would think that being restrained was good for patient morale?

On a more positive note, Dad’s WBC count was down to 10.4, which was finally in the normal range; it was a tad on the high side, but normal nonetheless.

Drs. Hayek and Stewart (who I affectionately dubbed the fellows) stopped by and we discussed the status of Dad’s breathing and the possibility of having the speaking valve trial on Monday. However, before Dad could get a speaking valve, he had to be able to breathe on the trach collar. Dr. Stewart told us that the respiratory therapist would stop by later in the morning to make the switch.

It was Friday, the day we referred to as the last day of dialysis for the week. As Carlos, the dialysis nurse, was setting up the dialysis machine, Dr. Nimrit Goraya, the attending nephrologist, stopped by with her nephrology fellow and residents in tow. She told us that because Dad had tolerated the last conventional dialysis trial, he would receive another four hours of dialysis again today. Carlos got the dialysis started at 9:30 A.M. In principle, Dad’s dialysis session would be over by 1:30 P.M.

During Dad’s morning trach care, Ashley, the respiratory therapist, changed out the ventilator apparatus for a trach collar and trach mask. The trach collar test was on!

I stayed home after lunch, but Mom returned to the hospital at 1:00 P.M. Shortly after she arrived, Dad started foaming around his trachstoma. She quickly located Ashley and Dr. Stewart, who said something about a hypoxic episode. Ashley switched Dad back to the ventilator. Although Dad had failed his initial breathing test, Dr. Stewart said that it was still a good day. Unbelievably, Dad slept through the whole ordeal, and he slept for the remainder of the time that Mom was with him.

Dad’s dialysis session was over at 1:15 P.M., and they were able to remove 1,400 ml of fluid without any instances of hypotension, which moved him one step closer to being discharged from Memorial to the CCH.

I arrived at the hospital at 6:45 P.M., and once again was very pleased to see Andrea. Dad was awake and looked pretty good. However, soon after I arrived he became very agitated and wanted to get out of bed. He insisted that he needed to get out of bed to use the bathroom. I had to hold him down. He tried to push me away, but for the first time in my life, I was stronger than him. He kept edging his feet over to the side of the bed like he was trying to get up. He finally started pulling his pillow out from behind his head and indicated that he was uncomfortable. I called Andrea and told her that Dad needed to be repositioned. Andrea and another nurse respositioned him, which seemed to calm him a little and divert his attention from his original purpose. Because of his agitation and the fact that he had had to be restrained the previous two nights, Andrea also gave him some Seroquel through his feeding tube. According to Andrea, the doctor had increased Dad’s dosage of Seroquel for nights when he was restless.

I was shooed out of the room at 7:45 P.M. so that Andrea could tend to him. I probably wouldn’t have been able to come back into his room for at least 15 minutes, so it seemed like a good time to go home. Dad had been so distraught during the time that I was there that I hated leaving him, and left feeling a little conflicted. It just hadn’t felt like a good day.

Maybe Bedside Manners 101 isn’t a required course

Published on December 20, 2016December 22, 2016 by mellowdee55Leave a comment

sunflowervase2 August 9, 2015. We arrived at the hospital at 9:00 A.M. to find that Dad was still asleep and restrained, the nurse’s name was not on the board, and Dad’s feeding tube was empty. Two out of three of these situations were unacceptable. I went to the nurse’s station to find out who his nurse was and to let them know that his tube feed bottle was empty. A nurse entered the room with a fresh bottle of Nepro, changed out his tubing, and replaced the empty bottle. The nurse also told me that Dad’s nurse was Nicole, who finally showed up at 9:15 A.M. and introduced herself.

My annoyance diminished somewhat when Nicole provided me with Dad’s latest lab results. His WBC count was still dropping and had reached 14.9, down from 16.4 yesterday. His liver function was only slightly elevated, which was fantastic news.

Dr. Nidhi Munshi, the weekend nephrologist, stopped by at 9:30 A.M. and told us that Dad would have an eight-hour dialysis session tomorrow.

Stan arrived at 10:00 A.M. and was soon followed by Dr. Vazquez and his entourage. We removed Dad’s restraints and told the nurse that Stan would be there until lunchtime and he would watch Dad to ensure that he didn’t pull out any of his lines and devices. They put him back on CPAP, but said that it seemed that his brain would sometimes forget to breathe when he was asleep. When we met with Stan during lunch, he told us that Dad had been fine and not become agitated while Mom and I were at church.

After lunch, Stan returned to Houston, Mom went back to the hospital, and I stayed home to catch up on some work. When Mom returned home, she said that they received the results from his blood test on Friday and he didn’t seem to have any infections present in his blood. Shortly after she had arrived after lunch, they had changed his ventilator from CPAP to pressure support, which meant that he was breathing on his own. Dad had refused to use his letter board and he couldn’t get a speaking valve until he could breathe on his own, so we were making some progress.

Mom and I returned to the hospital around 7:10 P.M. and were delighted to see that Tyler was Dad’s nurse. He hadn’t been assigned to Dad for several days. Tyler said that he noticed an improvement in Dad. While Mom and I were visiting, Dad seemed to be over-breathing the ventilator. His blood pressure was higher this evening, too. When I mentioned to Tyler that he’d be NPO after midnight because of a TEE scheduled for Monday, Tyler said that he didn’t know about the TEE. Mom and I just looked at each other and rolled our eyes. We headed for home at 8:20 P.M.

August 10. We arrived at 7:40 A.M. and noticed that Dad was already on dialysis. Before we arrived, they had drawn blood and ran an ABG test and found that his pH was up to 7.53, which meant that, instead of being acidosic, his pH was too alkaline. We were told that they could fix his current pH level by reducing the bicarb dialysate that he received during dialysis.

Dr. Evan Hardegree stopped by to get the TEE consent forms signed and told us that he’d be assisting Dr. Elizabeth Ebert. It was a coincidence that the cardiologist who was performing the TEE happened to be my parents’ doctor. I still hadn’t gotten used to the fact that once you entered the hospital, you dealt with only the hospital’s doctors and not your own. I hadn’t seen Dr. Ebert since May 19, the first time that Dad had aspirated.

Dr. Lu Pan stopped by to talk with us again about testing Dad on the four-hour dialysis session. He assured us that they would adjust the amount of fluid removed if Dad’s blood pressure dropped too much. Once again, the discussion about these conventional dialysis sessions was increasing my stress level. The back story to the discussion about the shorter dialysis was that they were prepping him for a transfer to the CCH.

Around 9:00 A.M., the cardiology team, led by Dr. Ebert, stopped by with the equipment necessary for the bedside TEE. While they were trying to decide whether the Fentanyl already in Dad’s system would be enough to keep him comfortable during the procedure, Svenja, the trach nurse arrived for a routine follow-up visit. The new tube was supposed to help wean him from the ventilator and she was concerned that Dad had not been on CPAP support much since she replaced the tube.

Mom and I left the room at 9:05 A.M. and passed the time by getting some coffee from the cafeteria. Sometimes the volunteers offered free coffee from their cart, but their coffee was pretty bad. I was no coffee connoisseur, but even I had standards, albeit low. As we arrived in the ICU waiting room, Dr. Hardegree met us and told us that they couldn’t detect any sign of infection on the new arterial valve. Yay!

Dr. White came by about 11:00 A.M. and was a real Debbie Downer. I had been feeling a little positive about Dad’s improved condition. In addition to the good news about the TEE, Dad’s WBC count was down to 13.1. When I looked for some positive feedback from the good doctor, he said that although Dad was better than he was when he first arrived, the doctor was not convinced that Dad’s condition would ever improve. Furthermore, because of Dad’s recurring apneic spells, he wasn’t sure that Dad would ever get off the ventilator, and he questioned whether Dad’s mentation would ever improve. When I told him that Dad had just had a TEE and that he was still partially sedated, he was not moved. I felt sick. If Dr. White was right, my father would never forgive us for trapping him in this hellish existence. Dr. White was one of the doctors who had a strong enough voice that Dad might be able to hear what he said, and I was very worried that Dad might have overheard this dismal prognosis. Mom said Dad’s condition seemed to improve after he received physical therapy. Dr. White said that they would try that and that they’d try to find him the cardiac chair.

hdwhite_prognosis — Dr. White’s notes in my father’s chart sums up his attitude about my father’s case.

After lunch, Mom returned to the hospital and I stayed home and tried to accomplish something at work. Sometimes I felt guilty for logging on to work and sending Mom back to the hospital to deal with our alternate existence.

When Mom returned home, she had a mixed report about the afternoon. It seemed to her that Dad had finally bonded with her again. We don’t know why he had been giving her the cold shoulder, but the problem seemed to have resolved itself.

Dad had been in an inside room for several days, and the doctor thought that a window room might help Dad with his mentation and delirium problems. With an inside room, there’s no real sense of day and night. When his nurse was able to round up a couple of other nurses to assist her, she moved Dad to room 238. The hospital was still undergoing a massive facade overhaul, so the window rooms weren’t all that quiet.

After Dad was moved, the nurses were able to move him into a cardiac chair. It’s an amazing contraption that starts as a bed and then morphs into a chair. Dad was still in the chair when PT arrived. The therapist was able to adjust Dad’s position in the chair, but Dad could not sustain an upright sitting position. He just kept slipping down the chair and didn’t seem to have the strength or inclination to sit upright.

Pastor Tom, the senior pastor from their church, stopped by to see Dad. Dad was sleeping, but Tom said that he’d try to visit again tomorrow.

When Mom and I returned to the hospital at 6:55 P.M., we were thrilled to see that Tyler was Dad’s nurse for the night. It had been a stressful day, with more downs than ups. Knowing that Dad was in good hands for the night always helped me and Mom rest better at night. I was still very disturbed about Dr. White’s prognosis and kept replaying the conversation in my head. During my nightly call with Stan, I was pretty upset by the events of the day.

August 11. Mom and I arrived at the hospital at 7:45 A.M. and noticed two things: Dad was restrained and he appeared to have had a bath and shave the previous night. We got Olga, his nurse, to remove the restraints. He immediately started grabbing at his lines and we had a difficult time with him for a while, but he eventually calmed down after they repositioned him. Dr. Hayek stopped by at 8:00 A.M. and adjusted the ventilator for CPAP. He said that Dad had been on CPAP for about 3-5 hours yesterday. I was pleasantly surprised because I thought he had been on CPAP support for only an hour. The other good news for the morning was Dad’s WBC count: it was now down to 12.2.

The fancy schmancy hospital beds were best suited for persons up to 5’10” in height. Dad was 6’1” and often would lie diagonally in the bed. In this diagonal position, he often started slipping out of the bed. We mentioned the problem to Olga, and she was able to find one of the few bed extensions, which added enough length to accommodate Dad’s frame so that he could lie straight in relative comfort without slipping.

Around 10:15 A.M., my parents’ next-door neighbors, LoSharis and Tom, stopped by for a short visit. Dad seemed to brighten up as they entered the room. He immediately recognized Tom and extended his arm to shake hands. I hoped that they would return soon. It seemed as if the fog that surrounded Dad was lifted while they were in the room. Mom had to run some errands, so she left shortly after Tom and LoSharris.

Dr. White made his rounds at 11:00 A.M. When he entered the room, I looked him straight in the eye and told him that Dad was wearing his hearing aids today, and that I’d appreciate it if he would respect that. He paused for a moment, nodded as if he understood the point that I was trying to make, and said, “OK.” Today’s meeting went better than yesterday’s, and Dr. White admitted that Dad appeared to be a lot more alert. I explained to him again that yesterday Dad had just had the TEE when the doctor rounded, so it hadn’t been a fair assessment. To his credit, he agreed that timing was everything.

Nothing positive happens around here without the other shoe dropping, and today was no exception. Dr. White said that he wanted to start Dad on four-hour dialysis trials to prepare him for a transfer to the CCH. I told him that I needed plenty of advance notice because we wanted to meet with April Jones, the CCH nurse manager, before he transferred. We had some concerns about the care that he had received there. Dr. White said that he also would like to hear my concerns and would be available to talk with me anytime. He wanted some specifics about the CCH and I told him about our first 12 nightmarish days there. I also told him that because the place was so dark it didn’t seem like a good environment for someone who was suffering from delirium. From what I could surmise, my comments seemed to fall on deaf ears.

When Dr. White left, I found a quiet place in the hospital to attend an online meeting for work. When I returned from my meeting, Dad was sitting in the cardiac chair. He started getting fidgety and then he experienced some breathing problems. The respiratory therapist was called, and she adjusted his ventilator settings.

After running her errands, Mom returned to the hospital at 1:00 P.M., and I left the hospital a few minutes later so that I could work online from home for a few hours.

Dad sat in the cardiac chair for about another hour. He kept squirming and sliding out of it and was finally moved back into the bed. As soon as he got back into bed, he fell asleep and slept until Mom went home for dinner.

Mom and I returned at 7:10 P.M. and learned that Tyler was taking care of Dad again! We were very surprised because Tyler had already worked three days this week. He told us that he was working five days this week. I was so glad to see him that I forgot that I was opposed to nurses working 60-hour weeks. Seeing him was a relief and felt like the answer to a prayer.

Condition stable; prognosis guarded

Published on December 15, 2016 by mellowdee551 Comment

sunflowersbg3 August 7, 2015. Mom and I arrived at the hospital at 7:45 A.M. Dad was still receiving CPAP breathing support. We were surprised to see that he was not having dialysis, but we had scarcely put down our purses when Lucy, the dialysis nurse, stopped by and said that she had been told to set up the (traditional) four-hour dialysis session. As she left the room, Dr. Lu Pan, the nephrology fellow, arrived and said that they were going to try the four-hour dialysis to see how Dad tolerated it. Mom and I were emphatic that he was not yet strong enough, and that Dr. Yau had agreed with us yesterday that he was not strong enough. Either the doctor had been patronizing or lying to us, or he had neglected to update Dad’s chart. I was not feeling too charitable with my suspicions.

After the nephrology gang left the room, Shannon, Dad’s nurse, told us that Dad’s WBC count was still on a downward trend and was now 17.6. Although his liver was still in shock, his lab work indicated that it was recovering, albeit slowly. She put drops in Dad’s eyes and got him situated in bed and ready for the day. She told us that when the doctor stopped by on rounds, he would discuss Dad’s dialysis plan with us.

I tried again to get him to do some type of exercise but struck out. Although both of my parents could be pretty determined, it had become pretty obvious to me, and probably my husband, that I had inherited the stubborn gene from Dad.

During morning rounds we learned that Dr. Alfredo Vazquez-Sandoval was now the attending physician. He told us that he would order a transesophageal echocardiogram (TEE) to verify that Dad’s new heart valve was still infection free. In an attempt to reduce Dad’s sleepiness, the doctor said that he would reduce Dad’s dosage of Seroquel, which they were giving him for delirium. He also talked about replacing Dad’s nasal feeding tube with a PEG, which would be inserted directly into his stomach. After my father-in-law’s terrible experience with a PEG, I had some strong opinions about this option and refused to entertain the suggestion. Because of Dad’s low blood pressure, the doctor said that Dad would have the eight-hour (and gentler) dialysis session today. You would think that with Dad’s improved status, these morning meetings would get easier. If only. On the one hand, he seemed to be getting better. On the other hand, his prognosis was still guarded. The cynic in me thought they’d like to get him out of the hospital so that his death didn’t adversely impact their survival statistics.

Lucy returned shortly after 10:30 A.M. to set up Dad for another eight-hour dialysis session. Dialysis started shortly before 11:00 A.M. Dialysis made Dad pretty sleepy, so Mom and I decided to leave for an early lunch and to run some errands.

I had to work from home during the afternoon, but Mom returned to the hospital after lunch in time to witness torture in the form of a blood draw. Under the best of circumstances, my Dad is what’s known as a bad stick. Shortly after his surgery in May, a nurse used ultrasound to find a vein so that he could start an IV. Today, the nurse told my mother that they needed two blood samples for a blood culture test and that only one sample could be taken from the PICC line. Not surprisingly, the lab technician had a difficult time finding a good vein, trying four times before she was finally successful. I hope the day will come when we won’t need a vial of blood for some of these blood tests. Although Elizabeth Holmes’ company, Theranos, has come under fire from the medical community, I hope that they’re successful.

Around 2:45 P.M., Lucy increased the speed of the dialysis blood transfer. She had scarcely left the room when the dialysis machine started making noise, which prompted Mom to leave the room and look for assistance. She quickly encountered Lucy, who returned with Mom to the room and decreased the blood transfer rate of the dialysis machine. I had mentioned in an earlier post that the dialysis team had customized the different warning and alarm sounds on these smaller dialysis machines. When these systems encountered problems, ranging from low patient blood pressure to clogged lines, the room sounded like you were in the middle of the “Who Framed Roger Rabbit” movie. The sounds emanating from this machine were unnerving.

The physical therapist stopped by and left a printout of some simple bed exercises with Mom. Mom said that at some point during the afternoon, someone, perhaps a social worker, stopped by to talk to her about Dad’s experience. She didn’t get a card or a name and Shannon (the nurse) had not seen anyone. Because of my less-than-fond feelings toward the case managers, I was suspicious about why this woman had been there, but I didn’t have any way in which to follow up on this impromptu meeting.

When I returned to the hospital after dinner, Dad was sleeping. Because I arrived before the shift change, Shannon was still there and was able to update me on Dad’s condition. She told me that because of his TEE that was scheduled for tomorrow morning, he would be NPO during the night.

Dad was still sleeping and didn’t wake up when I rubbed his hands and feet and moved his arms, so I decided that it was time for me to leave for the night.

sunflowersbg4 August 8. Mom and I arrived at Dad’s room at 6:30 A.M. The room was dark and Dad was still sleeping. Jennifer, his nurse, arrived at 7:30 A.M. and started her morning assessment of Dad. When she was finished, she told us that the night nurse told her that Dad was very agitated during the night. I wasn’t sure what that meant, but it didn’t sound good. On a more positive note, Dad’s WBC count was still trending downward.

Dad was still on BiPAP support from the night, but Dr. Hayek, one of the pulmonary fellows, said that he would put Dad back on CPAP after he was more awake. When Dad was sleeping, he sometimes quit breathing. It was almost like his body couldn’t remember to breathe when he was asleep–just another thing that made me nervous.

Dr. Brett Ambroson, the resident, came by to talk with us about Dad’s current condition. The TEE was still planned for this morning, and they’d be doing the procedure in Dad’s room. We were still waiting for results of the blood cultures from yesterday afternoon. Dr. Ambroson said that they were still working on a plan to transfer Dad to the dreaded CCH.

Dad got mad and frustrated and started flailing his arms. I used his anger and redirected it to more positive activities—like exercise. For about 15 minutes I was able to push against his arms as he struggled to raise them. It was the most resistance exercise that he had had in weeks.

At 9:40 A.M., Dad received his morning meds through his feeding tube. Shortly thereafter, he fell asleep and quit breathing. Fortunately, when the CPAP system detects that he hasn’t breathed in a few seconds, and the ventilator kicks in. He started breathing again after a few moments. He experienced a few more rounds of this breathing/not breathing scenario in the morning. His best breathing had occurred when he had been mad and exercising.

Dr. Vazquez and company stopped by during the morning rounds. He said that he was increasing Dad’s dosage of steroids to help with Dad’s adrenal glands and to help raise his blood pressure. He told me that the TEE procedure would be postponed until Monday, which meant that Dad had been NPO for more than 12 hours for no reason.

Dr. Munsche and the nephrology team stopped by and told us that Dad wouldn’t have dialysis this weekend. They plan to start dialysis again on Monday. She said that they should be able to continue dialysis on Monday during the TEE.

Dad had continued to have trouble maintaining steady breathing. Around 10:30 A.M., Dr. Hayek moved him back to full ventilator support. The plan was that they would move him back to CPAP support after lunch when I tried to get him to exercise. Maintaining a regular breathing pattern was another good reason to exercise him.

Mom and I returned to the hospital at 1:15 P.M. Dad was still asleep and still on the ventilator. We didn’t want to wake him, so we started reading our respective books and devices. Almost immediately, I fell asleep on the couch and Mom fell asleep in the chair. All three of us woke up an hour later when Jennifer and another nurse repositioned Dad in his bed.

Around 3:30 P.M., Dad started getting very agitated and I couldn’t get him to calm down. Jennifer and I discussed giving him Seroquel, the delirium drug, to avoid having to restrain him again. As it was, Dad’s agitated behavior was interrupted by some bedside treatment, and Mom and I had to leave his room. When we returned to his room 15 minutes later, he was sleeping. Mom and I didn’t feel like we were adding much value, so we left for home at 4:15 P.M.

When I arrived back at the hospital at 7:10 P.M. he was asleep, but restrained. While I was watching him sleep, his MAP dropped to 56. Dustin, the night nurse, came in and checked the monitor and said that it looked like Dad’s heart rhythm had also changed. He contacted the doctor, who told Dustin to start Dad on a saline bolus to see if they could raise his blood pressure without drugs. This was the first time that I was aware of that they had tried this approach to raising his blood pressure. To the layperson who didn’t know better, saline seemed like a better alternative than a vasopressor.

While we were waiting to see if the saline would do the trick, I asked Dustin about the restraints. He said that about an hour after we had left for dinner, Dad started pulling at his trach and then disconnected himself from the ventilator, so they had no choice but to restrain him. He also said that they would start him back on the Seroquel tonight.

At 7:54 P.M., Dad’s MAP finally rose to 65. I had scarcely exhaled in relief when it dropped back down to 56. I couldn’t be sure, but it felt like Dad’s low blood pressure was having an inverse effect on mine. It certainly affected my level of stress. Dustin checked again with the doctor, and they decided to continue the bolus therapy. After Dad’s MAP reached 68 and remained at that level for a while, I chatted with Dustin and left the hospital at 8:40 P.M. Between the restraints and his sudden struggles with hypotension, I wasn’t confident that Dad would have a good night. Nor was I sure that I’d get much sleep.

Frustration at every turn

Published on December 6, 2016December 9, 2016 by mellowdee552 Comments

sflower August 5, 2015. When Mom and I arrived this morning, Dr. Brett Ambroson, the resident, was finishing up his morning assessment of Dad’s current status. We were pleased to learn that the vomiting episodes from the previous day had stopped. Dr. Ambroson also noted that Dad would now move his extremities when prompted by him or the other care providers. When I asked about Dad’s WBC count, the doctor said that it was down slightly from yesterday. I wasn’t thrilled with the very slight decrease, but at least the steady upward trend had been arrested. While speaking with Dr. Ambroson, Lucy and Cheryl, the dialysis nurse and her aide, prepared Dad for another eight-hour session.

When the providers left the room, I shut the door and told Dad about the events that started on July 22. Although I did all of the talking, it was a very uncomfortable and disturbing interaction. He seemed to be very mad and appeared to be silently shouting at me. He then ignored Mom for the remainder of the day. I never knew why he was so mad.

Svenja, the trach nurse, stopped by and told us that she would be switching out his trach tube for one that was longer and softer. She explained that the new tube might help to wean him off of the ventilator and help with the air leakage problems that he had been experiencing. After Svenja inserted the new trach tube, I had her deflate the cuff to see if Dad might be able to speak a few words. He really tried, but we couldn’t understand him. I had hoped that I might be able to get some sense of why he was so mad. Our inability to communicate with him this time was disappointing but did not leave us with the feeling of devastation that we experienced on July 25 when we thought that he might die without being able to say good-bye.

During dialysis, Dad’s heart rate rose to 143 and stayed there and his MAP reached 103. Dr. Yau ordered an EKG and then ordered metoprolol to reduce Dad’s heart rate. Lucy also reduced the amount of fluid that was being removed during dialysis. These two actions returned his heart rate to the 70s-90s. At the end of his dialysis session, Dad’s heart rate returned to the 60s.

Mom returned to the hospital after lunch, but I stayed at home to work.

Like most of his days now, the afternoon was a mixed bag. He was now breathing on his own, with BiPAP support. However, his increased awareness seemed to increase his propensity to pull on his various invasive devices. To prevent the accidental or intentional removal of his feeding tube, the nurse bridled it.

At the completion of his dialysis session, Lucy stopped by and redid his dialysis catheter dressing. Because the procedure required a sterile environment, Dad had to wear a mask. The procedure took about 20 minutes and made Mom nervous. Because Dad was breathing on his own, she was afraid that the mask would inhibit his ability to breathe. The mask was over his face and not his trach, so I don’t know how much the mask actually interfered.

I returned to Dad’s room at 6:45 P.M to find him bent over to his left side with his head hanging off the pillow and his heart leads disconnected from his chest. His monitor was alarming, with no nurse or aide in sight. I was a little miffed, especially since no one came even after I used the call button. I finally flagged down Dr. Stewart, who helped me get him resituated and his heart leads reattached. You just have to hope that nothing goes wrong with you or a loved one during the shift change because you’re totally on your own.

Sarah was back as Dad’s night nurse, and Maggie, who was his nurse the previous night, was the charge nurse. Despite my earlier concerns, I was relieved that Dad was under the care of these two women. Maggie told me that she would be helping with baths again tonight and that they planned to also give Dad a shave. My father disliked facial hair, especially on himself. During his stay in the hospital, he had started to appear pretty scruffy.

Dad was much easier to get along with tonight. After Sarah assessed him and got him situated in bed, he spent most of the evening holding my hand until I left at 8:00 P.M.

August 6. Mom and I arrived at the hospital at 6:45 A.M. Dad’s nurse, Sarah, said that he had had a good night. True to their word, the night nurses had bathed and shaved Dad, and he looked much better. Dr. Ambroson said that Dad’s numbers were trending in the right direction, but he didn’t share those numbers with me. I asked him if Dad could see the physical therapist today. Physical, occupational, and speech therapy always took a backseat to anything else. Dialysis had prevented Dad from receiving PT yesterday. When the good resident had left, I told Sara that I wanted to speak with Lynette, Dad’s case manager. Yesterday, Dr. Yau had made a vague passing comment about transferring Dad to the CCH, and I wanted to follow up with the case manager.

At 9:15 A.M. Dad started having something akin to a panic attack. He indicated that he had chest pain, and then his heart rate spiked to 144. He stayed panicky and tried to tell me something, but I couldn’t make out what he was trying to tell me. At 9:45 A.M. he was transported to the interventional radiology department, where they replaced his tunneled catheter with a PICC line. I accompanied him so that I could sign his consent form. During the trip through the labyrinth that is the back halls of the hospital, the battery in Dad’s bed seemed to lose its charge. As wonderful as this bed could be, it seemed practically glued to the floor when it had no power. The transportation attendant eventually got the bed moving again, and we finished our journey.

When I returned to Dad’s room, Michelle, the dietitian, asked me if the plan was to send Dad back to the CCH. Shortly thereafter, Dr. George and the nephrology fellow stopped by and asked if the plan was to send Dad back to the CCH. Her reference to CCH was the second time in 15 minutes and the third time in two days that hospital personnel had mentioned this terrible place to us. I hated the thought of sending him back there.

When Lynette, Dad’s case manager, arrived, we had a tense and somewhat unpleasant conversation with her about Dad’s return to the CCH. When I told her that we didn’t like the care that he had received there, she said that we had alternatives. We could send him to a continuing care facility in Georgetown, some 50 miles south of Temple. When I told her that Georgetown wasn’t a viable option, she started some song-and-dance that S&W gave us options, and it was a valid option. Aside from the fact that we’d be unable to make multiple trips to the hospital during the day, I didn’t want my mother driving on the dangerous stretch of interstate highway that was in a perpetual state of construction. I would have preferred that Dad be transferred to the fourth floor at Memorial, but he was still too ill to move there, and they would not accept patients who received any sort of breathing support.

Dad returned to his room from interventional radiology at 11:00 A.M. The physical therapists stopped by at 11:30 A.M., but Dad refused to participate, and there was nothing that I could say to him that would change his mind. After that frustrating interaction, Mom and I left the hospital and went home for lunch. Before we left, I asked the therapist for suggestions of exercises that we could do with Dad between sessions to help build up his strength.

Mom returned to the hospital after lunch to find Dad sleeping, and he slept for most of the day but woke up shortly before Mom came home for dinner.

nodeal I returned to the hospital at 6:30 P.M., armed with a couple of small bottles of water. The physical therapist had told me that lifting the bottles while in bed would be good exercise for Dad. Unfortunately, he wouldn’t touch the bottles. I tried talking with him and shared some of his improved lab results with him, but nothing helped. I even tried to make a deal with him and told him that if he would exercise even a little, I would eat peas, which I detest. I still haven’t had any reason to eat peas.