dialysis – Page 6 – Tale of Two Parents

Back in the letter board saddle again

Published on January 4, 2017January 8, 2017 by mellowdee55Leave a comment

Saturday, August 15, 2015. Shortly after I arrived at the hospital at 7:45 A.M., Dr. Hayek ordered Dad moved Dad from BiPAP to CPAP support on the ventilator. They then reduced the settings to less support and let him breathe at the lower setting for about 30 minutes before putting him back on the trach collar. The attending physician, Dr. Ghamande, wanted Dad to have at least four hours on the trach collar today. If this trial worked out well, then they would attempt a six-hour trial tomorrow. During the nephrology visit, Dr. Goraya said that it was unlikely that Dad’s kidneys would function again, although they couldn’t say anything definite for another few weeks. Medicare requires that you be on dialysis for 90 days before you can be declared dialysis dependent. Although the 90^th day was just around the corner, the nephrologists seemed hesitant to declare that Dad had end-stage renal disease (ESRD) until he reached this milestone.

During my morning update of Dad’s early-morning lab work, I was told that his WBC count had inched up slightly from 10.4 to 10.7. It was still within the normal range, and I was provided the usual song-and-dance routine about how you have to treat the whole patient and not just look at the numbers, but his numbers had not just stopped trending downward, they were moving in the wrong direction. After 102 days, I couldn’t help but worry.

At 9:09 A.M., Pandora, the respiratory therapist, put the trach collar on Dad. He was now breathing on his own again. Leslie, his nurse, then asked him the following three questions to test his mental facilities: 1) Could you hit a nail with a hammer, 2) Can a leaf float on water, 3) Is a one pound rock heavier than a two-pound rock. He did OK on the first two, but answered “sometimes” to the last question.

For the second day in a row, Dad wanted some of our coffee. Mom and I decided that we should quit drinking coffee in front of him. I wondered if he could smell the coffee.

Shortly before 10:00 A.M. Leslie, the nurse, moved Dad into the cardiac chair. At 11:00 A.M., my husband, Stan, texted me that he had arrived from Houston. Mom and I left shortly thereafter to join him for lunch at the house.

After a nice lunch with Stan, Mom and I returned to the hospital at 12:40 P.M., while Stan stayed at the house and did some yard work. Dad was still sitting in the cardiac chair. He kept trying to talk and became pretty frustrated. His breathing trial was over at 1:15 P.M., and Pandora removed the trach collar and moved him to the CPAP setting on the ventilator.

At 1:50 P.M., Leslie rounded up a couple of nurses to help her move Dad from the chair to the bed, where he promptly fell fast asleep sitting up in bed. The ventilator started alarming, which drove Mom crazy. I guess it takes a certain type of alarm to get the attention of a nurse or respiratory therapist. In this case, water had accumulated the lines, which wasn’t life threatening. Unfortunately, we weren’t permitted to touch anything; we just had to listen to and endure the alarm while we watched nurses and aides walk past the room.

At 4:55 P.M., Mom went downstairs to the lobby to meet Stan. I wandered into the hall and happened to meet a nurse that we had dubbed as Daytime Natalie. She was a nurse in the CTICU, and Mom and I were very fond of her. She had a couple of minutes to spare and stopped in to visit with Dad.

Mom, Stan, and I ate dinner at a local restaurant to celebrate Mom’s birthday. Her birthday was tomorrow, but this was Stan’s only night in Temple. After dinner, Mom and Stan went home and I returned to the hospital and met Dad’s night nurse, Janine, and his respiratory therapist, Tatyana. Shortly after I arrived, Dad starting started indicating that he wanted to get out of bed, and continued in earnest until I finally was able to leave around 8:45 P.M. Starting at 8:15 P.M., I had started receiving text messages from Stan, asking if everything was OK with me and Dad. Every time I tried to leave him, he would grab my arm and want me to stay five more minutes. I felt more than just a little guilty when I left.

August 16. Mom’s birthday got off to a nice start with cinnamon rolls and some nice gifts from Stan. As Mom and I were driving to the hospital, my phone rang, but my purse was in the back seat and I couldn’t grab it before the call went to voice mail. I pulled over and noticed that the call was from Scott & White. Leslie, Dad’s nurse, had left a message saying that Dad was very tired and needed to rest. She went on to say that she was a little worried about him this morning and that she had contacted Dr. Stewart, who then put him back on the ventilator. She did not want us to wake him. If Leslie was trying to discourage us from racing to the hospital, she was failing miserably.

We encountered Dr. Goraya on the way into MICU, and she said that they would not be dialyzing Dad today. While talking with Leslie outside of Dad’s room, she said that she had been looking through the last few weeks of Dad’s charts, and by all rights, he should not be here now. Her comment made me feel good about his progress, but his condition was still very fragile.

I called Stan and told him about Leslie’s call, and that I still wanted him to come by the hospital while Mom and I were at church, but that Dad might be sleeping and that Stan should bring something to read. Should Dad wake up, then Stan could interact with him. I also wanted Stan to be with Dad, if the doctors should stop by while Mom and I were attending church.

When church was over, I texted Stan to let him know that Mom and I were heading home. He said that Dad woke up around 11:00 A.M., and that they were stepping him down to the trach collar for another six-hour trial today.

After our lunch, Mom and I arrived at 1:30 P.M. at the hospital and met Stan in the waiting room. He had been shooed out by the nurses about 10 minutes earlier. We were pleased to see that Dad was in the cardiac chair and breathing on his own with the trach collar when we arrived. Dad’s breathing trial started around 1:25 P.M. We had the TV turned on to the PGA tournament. Watching TV might not seem like a milestone, but he had probably watched no more than a couple of hours of TV since he was admitted on May 6. It was nice to see him interested in something.

Mom left the hospital for home around 4:25 P.M. About five minutes after Mom left, Dad finally tired of the breathing trial. He was still on the trach collar when I left at 4:45 P.M. His trial didn’t last much more than three hours, but considering how badly the morning started, we were pleased with his trial.

After dinner, we arrived at Dad’s room at 6:55 P.M. and spoke with Leslie for a few minutes before she left for the day. She said that Dad had been wearing her out. He’d been wiggling down the bed all day, in what seemed like attempts to escape from the bed. She finally made his bed alarm a lot more sensitive so that it would alarm whenever he wiggled down to one end.

Leslie said that she noticed during the day that Dad’s secretions had seemed more yellow and thicker than normal. She said that she had talked to the doctor about ordering a sputum culture. She said that it might not be anything because he’s not running a fever. The WBC count wasn’t collected during the early morning lab work, so I didn’t know if his WBC count was elevated.

Dad’s night nurse was Amanda. When she completed her evening assessment, she told us that his temperature was 98.7, which is practically normal for most people. However, normal for Dad was just over 97 degrees. It probably wasn’t a big deal, but I hoped that the sputum culture tomorrow would reveal something.

August 17. Mom and I arrived at Dad’s room a little after 7:30 A.M. and found that he was restrained and was already receiving conventional dialysis. His nurse, Jasmine, and another nurse were repositioning Dad in his bed, so his curtain was closed. While waiting in the hall I spoke briefly with Amanda, his night nurse, and she said that during her shift, Dad had tried repeatedly to pull out his trach tube. When she explained to him what that would mean, he indicated that he didn’t care and wanted to “be done with it.” To calm him, she gave him some Seroquel. As Dad’s health improved, it seemed that he was his own worst enemy.

Jasmine, Dad’s nurse, later told him that she would remove his restraints if he promised that he would not try to pull out his trach tube. She stressed to him that his safety was her primary concern. He indicated that he would not pull out anything. Jasmine told us that they would put the trach collar on him later today so that he could better express his wishes. Her comment sort of implied that he might get a speaking valve, but I wasn’t sure. I was a little disturbed when I learned that Dad’s WBC count was up to 13.2. Based on Leslie’s comments yesterday and Dad’s elevated WBC count, the doctor had ordered a Bronchoalveolar lavage (BAL) to see if Dad had any new infections.

Dad finally used the letter board and asked lots of questions about his stay. He didn’t realize how long he had been in the hospital and was very surprised when he heard what happened to him. I spent a long time explaining some details about his saga and I think that it helped to improve his attitude. Shortly after that, we started communicating more with the letter board. He seemed to be a lot calmer and seemed to understand more about his circumstances. letterBoard

Shortly before 11:00 A.M., I told Dad that Mom and I had to leave to attend a meeting with April Jones, the nurse manager at the CCH. We wanted to ensure, or try to ensure, that his second time at the CCH would be better than the first. He seemed pleased and lettered that he would be interested in knowing what she had to say. Following an annoying and frustrating meeting with Ms. Jones and her associates, Mom and I returned home for lunch. I stayed home and worked for the remainder of the afternoon.

When Mom returned to the hospital after lunch, a nun from the hospital’s chaplain office was in Dad’s room singing to him. Using his letter board, Dad told the nun to sing a song to Mom. Dad had already given the nun one of the family photos that I had taped to the wall. She said that she’d hang it in the chapel. Mom found the experience pretty surreal and realized that from one minute to the next, she never knew what to expect from Dad.

After pleading unsuccessfully for days to get Dad to use the letter board, it seemed that he now would not put it down. From what Mom was able to surmise, Dad whipped out the letter board for every person who entered the room—the nurse, doctors, and techs. Using the letter board, he asked Dr. Ambroson to take him to the kitchen, which tickled the doctor. In hindsight, this request was an indication that Dad was having trouble distinguishing the difference between home and the hospital. However, it seemed like a different person was now occupying Dad’s bed.

When Dad’s dialysis session was over, Dawn, the respiratory therapist, put on the trach collar. Then the nurses moved him to the chair. As Mom left the room, Dad used the letter board to tell her to be careful.

When I arrived at Dad’s room at 6:45 P.M., he was still in the cardiac chair, but he was soon moved back to his bed. Dad and I visited until 9:00 P.M. Using the letter board, he asked lots of questions about eating, going home, and many other things. He seemed to have lost some of the clarity that he had during the day, which I attributed to being exhausted from such a busy day. When I left, he still had one more hour remaining on his six-hour trial of the trach collar.

His night nurse, Amanda, said that she would give him some Seroquel this evening after the breathing trial and that he should sleep well. I wasn’t over the moon about Dad’s level of clarity this evening, but he had had quite a day communicating with everyone. I left the hospital hoping that the next day would be even better.

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.

The good, the bad, and the sad

Published on November 29, 2016December 6, 2016 by mellowdee55Leave a comment

hospitalbed August 3, 2015. It had now been 90 days since Dad first entered the hospital for his seven-to-ten day stay. When Mom and I arrived at 7:45 A.M., Dad’s room was a hubbub of activity. Dr. Phan, the nephrology resident, was assessing him and Emily, his nurse, was exercising his arms and legs. But the first thing that we noticed was Dad’s bed. Yesterday, Dr. Jimenez had told Dad’s nurse that he wanted to see Dad’s bed raised to a more upright position. I had envisioned that the angle of his bed would change from 30 to 75 degrees. What we saw instead was a bed that had morphed into a chair. It played music, automatically adjusted to specific angles, and could change into a chair. Was there anything that this bed couldn’t do?

Emily greeted us with a mixed bag of information. She told us that Dad had been off all of his vasopressors since 1:30 A.M. and that Dad had squeezed the doctor’s hand this morning in response to a verbal command. On top of that good news, the respiratory therapist had switched over his ventilator to CPAP, so Dad was now breathing on his own. I would have been over the moon, except his WBC count was now 19.7, which was up from 18.0. I was obsessed with his WBC count and noticed that it had been inching up for the past two days.

Under normal circumstances, the attending physician starts on Friday; however, life at the hospital had been anything but normal. Two weeks earlier, the director of the Medical ICU died in a freak accident at his home in Salado. Aside from the loss of an extremely well-liked coworker, the doctors’ schedules were shuffled to fill the administrative duties left by his passing. This shuffling of schedules resulted in the early departure of Dr. Jimenez and the early arrival of Dr. Yau as the new attending physician.

Dr. Yau said that he would order a CT scan to see if Dad had an infection outside of his lungs that could be drained, which would help lower Dad’s WBC count. On a more positive note, he said that it seemed that Dad’s kidneys had finally decided to wake up and start making urine. The day seemed to be going better than I could have expected. I hated to leave, but I had to return to my parents’ house to attend a noon meeting for work.

Shortly after I got home, my day started taking a downward turn when the internet service stopped working. With the internet being my primary connection to my job, I didn’t accomplish much for the remainder of the day.

Things weren’t going much better in my father’s room. From what my mother observed, Dad would not stop pulling on his feeding tube, CPAP connector, and trach tube. Mom was also upset because it seemed to her that Dad didn’t recognize (or acknowledge) her. Even worse, he seemed to regard her with some contempt, although he seemed pretty happy when the nurse was in the room. Because he was unable to communicate with us, we were very confused about his behavior and what he was thinking.

xmas2014 While Mom and I were at home for dinner, I printed out some recent photos of Dad with the family. I wanted the hospital personnel to see him as more than the sick man that they attended in that hospital bed. He hadn’t entered the hospital as some sickly old man, and I wanted them to have a sense of who he was just a few months earlier. After dinner, Mom and I returned to the hospital around 6:50 P.M. and learned that Dustin was Dad’s nurse. I wasn’t impressed with this nurse, and I wasn’t thrilled to see him again.

Dad seemed agitated again. In an attempt to calm him, I held his hand and talked to him for about an hour. He seemed to be calming down when the respiratory therapist stopped by to administer the oral treatment, but as soon as she left, Dad vomited. With his history of aspiration, I was a little freaked out. I quickly grabbed a nurse in the hall, and she got Dustin, who was seated at the nurses’ station. I wondered if he had been agitated because he felt nauseated. I’d never know.

After contacting the on-call resident, they decided to stop Dad’s tube feed for the remainder of the night. The doctor also ordered an x-ray and the nurse pulled out all the remaining fluid in Dad’s stomach. It seemed disgusting, but with the feeding tube, the nurse could use a syringe to withdraw the Nepro in his stomach. They occasionally suctioned his stomach contents to see how fast the tube feed was being absorbed by his system, and then they’d return the Nepro into his stomach. Something that once might have seemed pretty disgusting now was part of our daily routine.

At 8:25 P.M., Dustin and another nurse repositioned Dad and adjusted the back of his bed to a 45-degree angle. Tube feed-patients were usually kept at a 30-degree angle, so Dad was now a bit more elevated than usual.

As Mom and I were leaving for the night, Dustin told us that they would x-ray Dad sometime around 3:00 A.M tomorrow morning to see if he had aspirated anything when he vomited.

In addition to 90 days being a long hospital stay, it also marked the end of his annual insured Medicare days. From this point forward, he’d be drawing against his one-time reserve of 60 days. Surely he’d be home in less than 60 days.

August 4. Mom and I arrived to Dad’s room at 7:45 A.M. Dr. Brett Ambroson, one of the residents, was assessing Dad. He provided us with a brief update about the CT scan and x-ray, assuring us that Dad had not aspirated the Nepro last night. He also confirmed that Dad was still off all of the vasopressors. Shortly after Dr. Ambroson left, Dr. Adam Hayek, one of our favorite fellows, stopped by to see if we had any questions. While he was in the room, Dr. Hayak mentioned that Dad had vomited again during the night, so until the doctor stopped by on his rounds, the tube feed would be withheld.

For the first time since his readmittance to the hospital, Dad motioned for me to give him a kiss, and he smiled at me.

At 11:00 A.M, Travis, the physical therapist, stopped by to see if he could get Dad into a cardiac chair. Travis couldn’t find a cardiac chair, so he tried to get Dad to the side of the bed. Dad was pretty weak, and Travis had one heck of a time moving Dad. Fortunately, Heather, another physical therapist, stopped in to help him. Dad didn’t actually sit on the side of the bed, but they established a baseline of Dad’s strength. Travis said that he’d try to find a cardiac chair for Dad later in the day. I didn’t know what a cardiac chair was, but if Dad could barely sit on the site of the bed, I didn’t understand how he could get into a chair.

Just before we left for lunch, Pastor Don stopped by for a short visit and a much-needed prayer. Although Dad had seemed happy to see us, I wasn’t feeling as positive this morning about his status as I had been just 24 hours earlier. Although Dad’s condition was no longer grave, it was guarded, which diminished my anxiety only slightly.

As mom walked back into Dad’s room after lunch, Dad was pulling out his feeding tube again. Mom alerted Chris, the charge nurse, who secured the tube with a little tape and some glue.

Dr. Howell stopped by and said that the antibiotic that Dad was taking was very strong and that they wanted to hold it in reserve and not use it unless absolutely necessary. He added that it could take as much as four weeks to clear up the infection. Four weeks. That was over half of our remaining Medicare coverage time. I wondered if Dad would have to remain in the hospital until the infection was gone. His WBC count had inched up again overnight, and I was becoming more anxious about this infection.

At 3:30 P.M., the nurse gave Dad some Zofran for nausea, and told us that the tube feed would resume later that evening.

I had been at home working since lunchtime and returned to the hospital at 6:30 P.M. Sarah, the night nurse, came in at 7:05 A.M. to perform her evening assessment. Dad didn’t respond well to her commands, but I had a sense that he could if he wanted to. He was very frustrated and it seemed to me that he was losing his will. I talked to him for a long time, but I didn’t think that I made much progress with him.

Since Dad had become aware of his surroundings, we had talked to him about what was going on around him and the state of his health, but we had not told him what had happened to him at the CCH. For him, it probably seemed like one minute he was in dialysis and the next minute he was waking up in the hospital, hooked up to machines and unable to communicate. Stan, Mom, and I agreed that we should tell him what happened. Maybe tomorrow.

We’ll take your danged ten percent odds!

Published on November 15, 2016 by mellowdee551 Comment

July 30, 2015. Mom and I arrived to the hospital shortly before 8:00 A.M. When I asked Katrina, the nurse, about the results of his early-morning lab work, she told me that EPIC, the medical records system, was down, and that they didn’t draw blood this morning. It was amazing how the hospital seemed to operate in slow motion without the computer system. Nothing escaped being logged into the computer, so, with no computer access, when tests were requested, someone had to physically carry the orders, and then the specimens, to the lab.

Dr. Pan, the nephrology resident, stopped by to tell us that Dad would receive dialysis again today. They removed slightly more than two liters from him yesterday during dialysis, but Dr. Pan said that he still had some edema. He also told me that tomorrow Dr. George would replace Dr. Issac as the nephrologist.

Because of Dad’s pH imbalance, low blood pressure, and whacked-out blood gases, he had been sporting an arterial line (a-line) since he aspirated at the CCH eight days earlier. The doctor wanted to remove the a-line, but only if similar blood pressure readings were obtained from the blood pressure cuff. Katrina ran a test and it seemed as if the results were the same. With these results, they might pull the a-line later today, as long as they were through taking ABG tests.

While Mom and I were holding Dad’s hands, he became slightly agitated. I told him that until he could talk, he’d have to tell us that he loved us by squeezing our hands. Right away, he squeezed our hands. It was really the first time that we had had two-way communication with him. Dad then seemed to become confused and scared. I held his hand and tried to explain that he was back at the Memorial hospital.

Dr. Brett Anderson, one of the residents, stopped by to tell us that Dad would go to radiology this morning at 9:00 A.M. for the MRI. Dad was hooked up to a roomfull of equipment, so transporting him to the radiology department would be an ordeal. In preparation for the move, Mary, the respiratory therapist, arrived with a portable ventilator. We remembered each other from Dad’s earlier stay in the north tower.

While the nurse was prepping Dad for the move, and the transportation tech was tapping her foot, Holly from the speech pathology department stopped by to say hello and check on Dad. The transportation tech and nurse finally transported Dad and his paraphernalia at 9:15 A.M.

Shortly after Dad left, Pastor Don stopped by and stayed for about 30 minutes. Before he left, he said a much-needed prayer for Dad. Dad was returned to his room at 10:30 A.M. He seemed to tolerate the MRI pretty well.

Around noon, Katrina noticed that Dad’s feeding tube was clogged. She tried to unclog it but was not successful. Pulling out the tube woke him, but only for a couple of minutes. The process of inserting a new tube, having it x-rayed, and then having the x-ray reviewed would take some time. It seemed like a good time to take a lunch break. Mom returned to the hospital at 1:15 P.M. Because I needed to work, I stayed home for the remainder of the afternoon.

Shortly after Mom returned to Dad’s room, Dr. Burkholder, the neurologist, stopped by to give her the results of Dad’s MRI. In a nutshell, Dad’s prognosis remained guarded because of his myriad medical issues, but the doctor didn’t see any neurological limitation to Dad’s recovery. He did add that the degree of low blood pressure that Dad had sustained would most likely impact Dad’s neurologic recovery. He concluded his meeting with Mom by telling her that although Dad didn’t seem to have any permanent damage, he might not return to his baseline state in terms of intelligence. I wasn’t really sure what they knew about his baseline intelligence, so I wasn’t sure how to process that remark.

Before Mom left the hospital at 4:15 P.M., Dad had another EKG. Mom and I returned to the hospital at 6:40 P.M. I noticed that Dad had a new feeding tube, but it wasn’t bridled. I hated the bridle, but without it, I feared that Dad would pull out the tube.

I noticed that his Levophed dosage had been increased slightly, but was pleased to see that the oxygen setting on the ventilator had been reduced to 40%, which meant that he didn’t need as much oxygen support.

At 7:15 P.M., we heard that the EPIC system was back online. You could hear a subdued cheer from the nurses throughout the unit. Shortly after hearing that all was right with the world again, we met Jennifer, Dad’s night nurse.

Dad’s MAP (blood pressure) had been hovering around the low 60s, so Jennifer increased his Levophed dosage a couple of times. At 8:05 P.M., his blood pressure dropped again and this time she increased the dosage significantly. I heard her call pharmacy to see about adding another vasopressor.

While the respiratory therapist was administering oral care, Jennifer told us that she was adding another vasopressor to help control Dad’s blood pressure because he was now receiving more than the maximum dosage of Levophed. After she added the second vasopressor, she decreased the dosage of the Levophed. This day had been tedious and Mom and I were exhausted. We left for the night at 8:40 P.M., shortly after the respiratory therapist left.

July 31. Another Friday; another new set of attending physicians. Mom and I arrived at the hospital at 7:45 A.M. According to his nurse, Shannon, blood was not drawn this morning. When I asked her about his night and his status, she said that he was still on two vasopressors, but Jennifer had been able to reduce the dosage slightly. She said that Dad would open his eyes, but his eyes would not follow her hand and he wouldn’t respond to commands.

We met this week’s attending nephrologist, Dr. George. Mom wasn’t thrilled with her because she sounded too negative about Dad’s situation. Dad didn’t have much swelling today, but he was still somewhat acidosic, and dialysis could help. Dr. George’s visit was followed by Michelle, the dietitian. She wasn’t pleased with Dad’s nutritional intake and recommended that his Nepro volume be increased to 45 ml/hour.

Dad seemed to be in a bit of distress. I thought that he sounded gurgly, so we had Shannon call the respiratory therapist, Holly. While she was there, Holly repositioned Dad’s trach tube, adjusted the pressure on the ventilator, and suctioned his trach a little.

Wynn, our friend who works in the chaplain’s office, arrived for a short visit around 9:15 A.M. While she was here, we heard a loud bang outside the window that sounded like scaffolding breaking. Since Dad’s initial admission in May, the hospital had been in the process of removing an expensive copper façade and replacing it with ugly siding. As they progressed, the workmen covered up the patient windows, which made the rooms gloomy. We didn’t hear profanity from outside, so we assumed that no one was hurt.

family Shortly after 10:00 A.M., we met Dr. Edgar Jimenez, this week’s attending physician. He said that they were going to change Dad’s antibiotic to something stronger to battle the strong bug that Dad had in his lungs. He then proceeded to tell us that Dad’s situation was grave, and that he had no more than a 10% chance of survival. As Mom and I stood to the side of Dad’s bed, holding on to each other, I told the doctor that when I was 14, the doctors told my parents that I would die from peritonitis, and that two months ago, the doctors had told me that my mother might never talk again. I told him that we’d overcome worse odds, and that 10% sounded pretty good to us. He looked at us for a moment and then to his entourage, and said, “OK; they’re a strong family,” and they left the room. Truth be told, my knees were wobbly and I felt a little nauseated.

Mom and I had heard about Dad’s 90% mortality prediction since his arrival some 10 days earlier. Much later, I learned that they used something called the Apache IV mortality scoring system, and Dad had scored poorly.

silksuns_thumb When Dad was transferred from the CCH to Memorial, his flowers could not come with him. Cut flowers and plants are not permitted in the ICU. I had been thinking about it for a couple of days, and I was now determined to brighten up Dad’s room. After lunch, I cleaned the vase that had held his sunflower arrangement, took it back to Precious Memories, and asked if they could recreate the arrangement with silk flowers. The florist helped me to find the perfect flowers, and they made an outstanding replica of the original arrangement. The bouquet raised a couple of eyebrows, but the charge nurse assured me that artificial flowers were permitted, although they had never seen them before in the ICU.

Shortly before his dialysis was over, Dad’s blood pressure started falling, and his MAP dropped to 54. The nurse increased his vasopressors, and as soon as dialysis was over, his MAP spiked to 118. Shannon finally got his blood pressure stabilized, and moments later, Dr. Fernandez arrived. Dad had had a femoral a-line in his left arm for quite a while. Instead of removing the a-line as originally planned, the doctor wanted to start a new a-line in his right arm so that they could remove the current one from his left arm. This type of procedure required a sterile environment, which meant that Mom and I went to the ICU waiting room. We sat in the waiting room for an hour before the doctor was finished. When Mom and I returned to Dad’s room, it was a bloody mess. Doctors make the messes and the nurses clean up after them. Dad still had the left a-line, but Shannon removed it after she made some sense out of the chaos in Dad’s room.

Mom and I drove in separate cars, and she went home immediately after the procedure. I stayed around for a few minutes more, and left at 5:30 P.M. When I got home, Mom and I picked some fruit and vegetables from their garden and fruit trees, one of the few normal activities in our lives.

I had been posting some updates about Dad’s condition on Facebook, but Dad’s condition was so volatile that the posts had become few and far between. During dinner, Earline, a dear family friend of some 60+ years called to get a more recent update about Dad. After the day that we had had, Earline couldn’t have timed her call any better.

Mom and I arrived back at the hospital at 7:25 P.M. I had prayed for it, and my prayers came true: Tyler I and Tyler II (the nurse and respiratory therapist) were assigned to Dad. Mom and I were overjoyed and I was so relieved to see him that I had to hug Tyler as soon as we entered Dad’s room. We stayed until 8:30 P.M., and left the hospital knowing that Dad was in good hands for another night.

Why can’t doctors speak English?

Published on November 1, 2016 by mellowdee55Leave a comment

July 29, 2015. Dr. Hildago, the neurology resident, was in Dad’s room when we arrived at 7:45 A.M. She told us that his ammonia levels were back to a normal level and that his eyes would now follow her hand, which was an improvement over yesterday. We were still anxiously waiting for the radiology department to schedule him for the MRI. Dialysis had already started, but it could be interrupted for the MRI.

ack His pulse was running in the 130s again, and his oxygen saturation levels were low. To compensate for the low oxygen levels, the respiratory therapist increased his oxygen levels on the ventilator to 60%. A few minutes later, the ventilator started alarming, which prompted the nurse to page the respiratory therapist. Evidently, one piece of the ventilator was cross-threaded, which was what caused the system to alarm. The alarms were starting to drive us crazy and I could swear that I could hear them when we were away from the hospital.

Dad’s heart rate was like a roller coaster all morning. A resident stopped by and said that we might be able to stop the wild fluctuations if we gave Dad some Fentanyl, the pain killer. If that was true, then perhaps I now understood why they would give an unresponsive person pain killer.

A technician stopped by at 8:55 A.M. to administer an EKG. Dr. Burkholter and his neurology team stopped by 45 minutes later. He did observe that Dad was a bit more responsive than he was Monday, but his responses were not robust. He wouldn’t know more until they could see the MRI.

words When Dr. White and his band of providers arrived outside of Dad’s room, I heard comments about Dad being tachycardic and encephalopathic. It took several Google searches before I came close to the correct spelling of either term. When he finally entered the room, the doctor said that Dad was on the right antibiotic, although his WBC count kept increasing. He added that they would probably perform a bronchoscopy on Dad later today to ensure that everything was OK with his lungs. He commented that it was good that Dad seemed to be waking up, but he said that he suspected that Dad’s tachycardia was related to his change in mentation. I had watched a lot of medical dramas in my day, but I still wished that he’d talk about Dad’s rapid heart rate instead of tachycardia.

When Svenja, the Trach Goddess of Scott & White, had last visited my father, she said that if Dad improved, she would switch out his tracheostomy. She returned today to switch out the current trach tube for a softer one that would be more comfortable for Dad. Svenja was another comforting provider, and I was glad to see her again.

At 11:00 A.M., I went to the hospital cafeteria for coffee. While I was gone, Mom said that Dad opened his eyes full wide and looked around the room. By the time that I returned to the room, he appeared to be sleeping again.

We had several visitors during the afternoon. Sandra, one of the Lay leaders from the church, stopped by for a short visit and said a prayer. A little later, Kelli, the charge nurse from the north tower ICU, stopped by for a short visit. She was leaving for vacation and wanted to check in on Dad before she left. The providers in the south tower were great, but sometimes I really missed the nurses in the north tower, especially Kelli. Not long after Kelli left, Addison, a speech therapist, also stopped by to visit for a few minutes. I liked visiting with Addison and Holly, the two speech therapists. When they entered the room, it felt like they brought in sunshine with them. My mother felt the same way about Adan, the speech therapist at the CCH. Perhaps there’s something special about people who become speech therapists.

Shortly before 4:00 P.M., I was presented with a bronchoscopy consent form, which was quickly followed by the arrival of the mobile bronchoscopy unit. Shortly before 4:30 P.M., they started the procedure, which had become almost routine to me. I wondered how routine it had become for Dad. I hoped that he had been oblivious to all of them.

While Mom and I were waiting for Dad’s procedure to end, Wynn Moore stopped by to say hello and tell us that she was leaving town for a few days. It seemed like everyone was going someplace. There was such a dichotomy between life inside and outside the hospital.

As we were leaving for dinner, Charris, a resident who had been assigned to Dad since his readmittance, told me that she was off for the next couple of days but would be back on the night shift for the weekend. I was disappointed that I wouldn’t see her for a few days. As it turned out, I never saw her again, which was a shame.

We returned from dinner at 6:45 P.M. and met Dad’s night nurse, Cinnamon. The day shift personnel wouldn’t be leaving for about 20 minutes and Mom and I wanted to say good-bye to Kelli, although I hoped to still be here when she returned in five days.

When we returned to Dad’s room, he was receiving only a tiny dose of Levophed, his remaining vasopressor. Cinnamon thought that she’d be able to reduce that amount somewhat or entirely by the end of her shift at 7:00 A.M. Unfortunately, his oxygenation was still poor and he was receiving 65% oxygen from his ventilator.

Cinnamon seemed very attentive to Dad. Mom and I felt better than last night with him in her care than we had with Dustin the previous night.

We held on to positive moments

Published on October 25, 2016 by mellowdee551 Comment

July 27, 2015. I was working from my parents’ home, and I would log on to my office network at 3:45 A.M. I had coworkers in India and Israel, and by starting at this time, I could work with them for two or three hours before I went to the hospital.

Shortly after 4:30 A.M., it occurred to me that my Millennial cousin might be more of a texter than an emailer. To ensure that he would read my email that I sent him last night, I texted him to tell him that I had emailed him the previous night. Sure enough, about an hour later he called me on my mobile phone. He wasn’t able to give me many answers, but he did provide me with information that I could research further so that I could converse with the doctors and ask reasonably intelligent questions.

Mom and I arrived at the hospital at 8:00 A.M., only to learn that Dad was still unresponsive. According to Kristina, his nurse, he would open his eyes and grimace only to a sternal rub and other painful stimuli. The sternal rub can be painful for anyone, but Dad had just had open-heart surgery a couple of months earlier, and I couldn’t bear to watch this exercise. He would not respond to or follow any verbal commands. I later watched the doctor inflict this pain, and it was hard to watch. Worse yet was the slow-motion response from my father. It’s an image that I can’t shake.

sunflowervase Carlos, the dialysis nurse, arrived at 8:15 A.M. and proceeded to prepare Dad for dialysis. At the same time, Dr. Fernandez, one of the fellows who worked in the ICU, performed a brief assessment of Dad’s condition. Following his assessment, he sat down with me and Mom and told us how pleased he was to see our devotion and attention to Dad, and added that he wished that all his patients had families like us. As he left us, he said that he thought that our prayers would be answered. It was a moment that would carry us for a few days.

Shortly after his dialysis session started, I put the radio headphones on Dad’s head. I left the headphones on him for about 30 minutes, but we still didn’t see any response.

Because Dad’s blood pressure and temperature dropped during dialysis, Dad’s nurse had to increase his vasopressor. It was discouraging to see the dosage increased, but it was still lower than it had been yesterday.

From the moment that we would arrive at the hospital, I would scan the halls to try to determine where the doctor was on his rounds and when he would arrive to Dad’s room. After he and his party arrived, I’d stand in the threshold so that I could eavesdrop on their conversation, which was usually more enlightening than his meeting with us. It’s also where I picked up some medical jargon. Today Dr. White and his entourage appeared outside Dad’s door at 10:20 A.M. As usual, he held court with his team of residents, fellows, pharmacists, and the nurse for several minutes before entering the room. He eventually agreed that things seemed to be progressing in the right direction—except Dad’s noggin. He also said that because Dad’s platelets were low again, he would request a hematology consultation. On a very positive note, the lowering of the vasopressors had improved the blood flow in Dad’s extremities, and Dad would not lose any toes!

When Mom and I returned from lunch at 1:00 P.M., we found Dr. Hildago, a neurology resident, in Dad’s room. Between the two of us, Kristina and I updated the doctor on Dad’s 83-day medical history.

After the neurology resident left, we were pleasantly surprised to see Pastor Don and his wife, Wynn, enter the room. Seeing the two of them had sort of a cleansing effect on our stressed-out emotions. Mom and I always enjoyed their visits and hated to see either one of them leave.

Dad’s tube feed had resumed yesterday, and the dietitian stopped by to assess his nutritional requirements and status. The current flow of Nepro was less than half of what it had been when he aspirated. The dietitian recommended that it be increased to 40 ml/hr, which would provide him with about 1,700 calories day.

At 2:15 P.M., the hematology team arrived. Because Dad’s lab work showed that he had Thrombocytopenia, Dr. White had requested a hematology consultation. According to the doctor, Dad’s platelets dropped when he became septic and required vasopressor support. From what the doctor said, Dad’s sepsis condition also increased his platelet consumption. To make matters worse, Dad’s infection and the antibiotics both suppressed the bone marrow production of platelets. For these reasons, the hematologists were not surprised that Dad’s platelet count continued to be low. They said that they would give him platelet transfusions whenever his platelet count dropped below 20. Following the platelet transfusion the other day, his platelet count now sat at 26, which was still pretty low.

Moments after the hematology team left, Dr. Burkholder, the neurologist, arrived with a couple of residents in tow. He told us that Dad should have an EEG sometime later today and an MRI either tomorrow or the next day, depending on various schedules. This brief encounter with the doctor was typical of how we interacted with the specialists. The resident or fellow would arrive and spend quite a bit of time assessing Dad, and then the doctor would pop in for two minutes, basically repeating what the resident had told us earlier.

Dad’s oxygen levels had been fair, and when Nikita, the respiratory therapist arrived, she increased his oxygen level on the ventilator from 40% to 50%. As she adjusted the ventilator settings, she said that she’d probably decrease the levels back to 40% later in the day.

Kristina had shown me how to exercise Dad’s arms. When she saw me moving his arms, she showed me how I could also move his legs. I had barely started exercising his legs when the EEG tech arrived.

After the EEG, which takes longer to set up than to administer, Mom and I left the hospital to run some errands and eat dinner.

sunflowervase2 When we returned to Dad’s room at 7:00 P.M., we were thrilled to see that Tyler was Dad’s night nurse again. Nights were scary for me and Mom, and knowing that Dad was in good hands gave us some peace of mind. Dad’s vasopressor dosage had inched down again, which was also wonderful to see. Unfortunately, the oxygen setting on the ventilator was still set to 50%, which meant that Dad’s oxygenation was still shaky.

While Tyler was getting set up for the night, I exercised Dad’s arms and noticed that he seemed a little flushed. Usually the hospital room felt cold enough to set Jell-O, but for a change, Mom and I weren’t shivering. When I checked the thermostat, I noticed that it was set for 75 degrees—a setting that we hadn’t seen before and would never see again. Tyler quickly adjusted it back to 68 degrees.

When Mom and I left for the night, Tyler was oiling Dad’s dry feet and said that he planned to wash Dad’s hair. If only Tyler could work every night.

Taking it one hour at a time

Published on October 12, 2016October 14, 2016 by mellowdee551 Comment

sunflowers1 July 24, 2015. The call that we dreaded from the hospital during the night hadn’t come. We didn’t know what to expect today, but we had to take it one hour at a time.

When Mom and I arrived at the hospital, we found that Dad was back on dialysis, for the fourth time this week. According to Andrea, his nurse, Dad was less responsive this morning, which was not what we wanted to hear. She added that, according to his morning lab work, he was still suffering from metabolic acidosis. She had been able to wean him off of one of the vasopressors, but his blood pressure dropped below 65 MAP during dialysis, and they had to restart the vasopressor. When I asked her about his WBC count, she told me that it was up to 18.9, a 300% increase in less than 48 hours.

Dr. White started his rotation today as the attending physician. We now had what seemed like a long relationship with this doctor, and he didn’t pull any punches with us. He told us that because of all the vasopressors that Dad was taking for his low blood pressure, his toes were being affected and he might lose a couple of them. The doctor strongly suspected that Dad’s circulation problems would begin to move up his extremities. Dad’s liver was also in shock, and the good doctor said that he was surprised that Dad had been able to withstand the dialysis. He also stated that Dad’s pupils were nonresponsive and he did not withdraw from pain, even when taken off sedation. He reiterated Dr. Sanchez’s prognosis from yesterday in that he did not expect Dad to survive this episode. At the end of this uplifting visit, Mom and I felt that we might need to make a decision tomorrow or Sunday.

Pastor Don stopped by around 1:45 P.M., and Mom and I had a very emotional visit with him. I just couldn’t believe that this was happening, and Don said that it was OK for me to be mad at God. I was mad, frustrated, and heartsick, but I don’t think that I reached the point of being mad at God. Among other things, Don asked us if we had considered hospice. I wasn’t sure whether hospice care was available at the hospital or some other location. At that point, I hadn’t considered anything, and I wasn’t ready to think about it.

Shortly after Don left us, I walked over to the north tower to visit with some of the CTICU nurses. I found a couple of our favorite nurses and provided them with a brief update on Dad’s status. When I returned to Dad’s room, I learned that Andrea had been able to wean Dad off of two of the five vasopressors, and his blood pressure seemed to be stable. This was the first good news since Dad’s return to Memorial, and I could feel myself exhale. I said a silent prayer that we could wean Dad off the remaining vasopressors before he lost any extremities.

Later in the day, Pastor Don stopped by again with his wife, Wynn. Mom had met her two nights earlier, but this was the first time that I had met her. I found her to be delightful and I was pleased to learn that she worked in the chaplain’s office at the hospital.

Vasopressors increase blood pressure by constricting the blood vessels. This constricting of blood vessels is particularly acute in the extremities and in situations like Dad’s, toes and fingers sacrifice blood flow for the benefit of the vital organs. Andrea tried to find Dad’s pulse in his feet with her hands, but couldn’t. She eventually was able to find a pulse in both feet with a Doppler ultrasound. The relief among those of us in the room was palpable when we heard the sound of blood flow.

Mom and I went home for dinner and returned to the hospital at 7:15 P.M. Charlie, the respiratory therapist, had just finished Dad’s trach and oral care and ventilator maintenance. Dad was still on three vasopressors. Mom and I met Donna, the night nurse, before leaving for the night. She told us that Dad had additional blood draw after dialysis and that his WBC count was now 22.7, up another 4 points from this morning. His WBC count hadn’t increased at this rate since his first aspiration episode in May.

I should have been encouraged that Dad had survived another day, but I was concerned about Dad’s worsening responsiveness. I couldn’t stand the thought of losing him without being able to communicate with him one last time. I had mentioned to Andrea that I wanted to talk with a respiratory therapist to see if there was a way in which we could communicate with him.

July 25, 2015. Mom and I arrived at Dad’s room at 7:15 A.M. We were pleased to see Andrea again, but nurses work only three days each week, so we knew this was our last day with her. Dad’s WBC count was now 19.2, down slightly from yesterday afternoon, his hemoglobin was down, and his acidosis condition had improved to the point that he was now slightly alkaline. Dad had been receiving a bicarbonate drip, which they now decided to stop. The vasopressors were still affecting the blood flow in Dad’s feet. We held our breath again as we watched Andrea struggle to find a pulse with the Doppler ultrasound.

Dad was sleeping a lot, and Andrea said that he was not responding to commands, but he opened his eyes for her. He opened his eyes for me, too, but I couldn’t get him to squeeze my hand.

Charris, one of the residents assigned to Dad, told us that when Dad arrived a couple of days ago, they performed a mini bronchoscopy on him to take some cultures from his lungs. They now knew that in addition to the aspiration pneumonia, he also had an infection (pseudomonas) in his lungs. Severe cases of pseudomonas generally occur in people who are already hospitalized with another illness or condition, or people who have a weak immune system. It seemed that everything that ailed Dad now was hospital acquired.

Dr. Pan, the nephrology resident, stopped by and told us that because Dad was not very acidosic and didn’t seem to have much extra fluid, they would not dialyze him today. He said that the nephrology team would assess Dad on a daily basis to determine whether to dialyze.

Dr. White stopped by during rounds at 8:00 A.M. He agreed that we’d seen a slight improvement in Dad since yesterday–probably due to the dialysis. He was able to feel the pulse in Dad’s feet with his hand, and he said that Dad’s feet looked better than they did yesterday. I knew that I shouldn’t have been so concerned about his toes when his life was at stake, but I was relieved that the pulse in Dad’s feet was getting stronger as they weaned him off of the vasopressors.

Now that Dad was back on the ventilator, he couldn’t talk. I got some wild idea yesterday that I had to give Dad a chance to communicate with us if he was going to die. Andrea said that she would contact the respiratory therapist to see if it would be possible to enable him to talk. The respiratory therapist contacted Svenja, the Trach Goddess of Scott & White. We hadn’t seen her since June, when she first changed Dad’s trach. When she heard about Dad’s condition and our desire to communicate with him, she agreed to give it a try. Unfortunately, all of her efforts failed to work, and we probably sapped some of Dad’s strength. The exercise woke him up for a couple of minutes, but he fell asleep almost immediately when Svenja reinflated his trach collar.

When Mom and I returned from a lunch break, we found that Dad was still asleep and impossible to rouse. Most of his vitals were still good, but Andrea told us that his platelet count had dropped, and he needed a platelet transfusion. We sat in the room with Dad for a few more hours and finally went home for dinner. It was difficult to stay in the room with him in his current condition, but it felt worse to leave him. Although his vitals were stable, his condition was still grave, and the failed attempt to communicate with him had wilted my already sagging spirits.

We returned to the hospital at 7:00 P.M., in time to meet Tyler, the night nurse. Mom and I liked him immediately, and he seemed intent on weaning Dad off of the vasopressors. While talking with the nurse, the respiratory therapist, also named Tyler, attended to Dad’s trach, the ventilator, and Dad’s oral care.

Before we left for the night, Tyler put some lotion and booties on Dad’s feet to help with his peeling and cold feet. Tyler told us that he would be working for four nights that week, and we really hoped that he would be assigned to Dad. When Mom and I left for home at 8:30 P.M., we felt a small sense of optimism that Dad would have a good night, and maybe we would too.