A little more recovery and a little less drama

September 1, 2018. My days at the hospital were full of impromptu meetings with healthcare providers and with caregiving activities in between, none of which was really scheduled and all of which was really important for Dad’s recovery and well-being. For me to be present for all these meetings and ensure that all caregiving was taken care of, it was practically impossible for me to leave the hospital to run errands during the day. Also, by the time that Mom and I left in the evening, we were usually too weary to fight the rush hour crowds in the stores. Fortunately, most stores opened early on Saturday, so today I ran a couple of errands on the way to the hospital. Mom stayed at home to wait until my husband, Stan, arrived from Houston. I arrived at Dad’s room at 7:35 A.M. to find that Dad was sleeping and his breakfast tray was on his bedside table, which was not unusual. What was unusual was that his bed was no longer in the center of the room. Instead, it was pushed within a few inches of the outside wall. I suspected that the furniture rearrangement was the result of Dad attempting or succeeding to get out of bed last night.

He was easy to wake, and I was glad that he was no longer fixated on the annotation on his bandages. However, within a few moments of waking, he became fixated on “one day’s paper,” a topic that I could not understand, and I could not divert his attention elsewhere.

morerecoverycross1I was glad when Dr. Blake Tanner, the nephrology resident, entered the room, thinking that Dad might turn his attention to another subject. However, I was a bit disturbed when he could not answer the doctor’s questions about where he was or the year, which were daily questions to ascertain mentation. Dr. Tanner said that they would hold off on dialysis and diuretics today to see how Dad’s kidneys functioned. In one of the days where they gave him diuretics, Dad voided 300 ml of urine; on a day without diuretics, he voided 350 ml, so they wanted to see how his kidneys functioned today. Depending on today’s results, they might dialyze him tomorrow. The doctor checked for swelling in Dad’s legs, but they still seemed to be fine. He said that they were waiting on the results of the morning labs, but he didn’t think that they would see anything that would alter their plan. They hoped that the Midrodine would elevate Dad’s blood pressure enough to get the kidneys to produce more urine.

Now that Dad was fully awake, I wanted him to eat. Because he was low in his bed, I used the call button to summon someone to help me adjust him in the bed so that he could eat. His sheets were also wet from wound seepage, which I also wanted to be addressed.

img_0030After waiting for 35 minutes, Storie and Miguel, the nurse and aide (CNA) entered Dad’s room. When I asked about the location of the bed, Storie told me that they had been told that they could not move the bed back to the center of the room because Dad was a fall risk and an escape artist. While they were changing Dad’s gown and adjusting his position in the bed so that I could raise the head of the bed, I ran downstairs for a cup of coffee.  When I returned, I heated up Dad’s breakfast and started to feed him, but he fell asleep before we had made much progress. He still needed to take his morning meds, which was an ordeal when he was half asleep. Fortunately, he still had some Cream of Wheat in his bowl, and Storie was able to crush his pills and mix them in the warm cereal. He made a face as he took the nasty concoction, but at least we were successful in getting the pills in him without him choking on a liquid while trying to swallow the pills. By 9:10 A.M., Dad was sound asleep.

Five minutes later, he was wide awake and wanted to drink his Nepro. He was able to hold the container of Nepro without spilling it, which was an improvement from yesterday. His dexterity suffered when he was in the hospital, and the presence of the oximeter on his hand didn’t help matters. He nibbled at most of his breakfast, but I was pleased that he drank all of his Nepro. By 9:30 A.M., he was sleeping again. It was almost startling how quickly he could wake up and fall asleep.

glacialspeedcross2At 11:45 A.M., Miguel took Dad’s blood sugar and it was 42 (normal is 100), which prompted him to call the nurse.  Storie entered the room with Shelly, another CNA, and had him drink a couple swallows of orange juice. Shelly then had the nearly impossible task of getting Dad to consume a tube of a substance similar to Karo syrup. He hated the taste of it and she practically forced it into his mouth.

At noon, his lunch tray arrived, and Stan and Mom arrived a few minutes later, at 12:15 P.M. While I updated them on the events of the morning, Miguel returned to recheck Dad’s blood sugar. It was now up to 73, which was still very low, but it was no longer dangerously low.

morerecoverycross1At 12:45 P.M., Mom and I left Stan with Dad while we drove a few blocks to Chick-fil-A. The nephrology team entered the room at 1:00 P.M., followed by Bonnie, the physical therapist. I knew that the nephrologists’ visit would be short, and I asked Bonnie if she could wait. She said that she didn’t have time to wait and left. I hated that Dad might miss a physical therapy session and hoped that she would return soon.

I was relieved when Bonnie returned, but we were unable to wake Dad. Thinking that it might be his blood sugar, she summoned the CNA to recheck it, but it was now up to 101. She eventually left.

I had been working on an embroidery project, but the new room rearrangement made it impossible to work in Dad’s room. Now that Stan was here, I felt that I could leave the room, so I moved out to the 6 North waiting room. At 2:15 P.M., Stan came to the waiting room to tell me that they were giving Dad some albumin to increase his blood pressure. Dad had been pretty drowsy today, and I hoped that the albumin would help him stay awake.

glacialspeedcross1At 3:15 P.M., the nurse pulled out Dad’s central line on the left side of his neck, which had been replaced by the tunneled line yesterday. He added that Dad’s blood pressure was 113/65, which was good.

At 4:00 P.M., he started receiving Lasix, a diuretic, which meant that something had changed to make the nephrologists change their minds about holding diuretics today. Right around that time, the hard disk failed on the computer in Dad’s room, which was very inconvenient for the nurses, who now had to use the computer in the room next door to access and update Dad’s chart. Because it was Saturday, and a holiday weekend, the nurses didn’t hold out much hope for getting the computer fixed, although they had a few conversations with the IT support person who was on call.

At 5:30 P.M., in preparation for his dinner, I asked Shelly, his new nurse, to reposition Dad in his bed. At 5:45 P.M., Stan and Mom went home to start preparing our dinner while I stayed to help Dad with his dinner. I thought that feeding Dad would take only a few minutes, but I was very wrong. He was talkative and asked dozens of questions about his condition. He was able to eat and swallow well, but the talking slowed the progress. When he had finished his dinner, he wanted me to stay and review his situation and plans with him. Stan texted me a couple of times to see if everything was OK.

morerecoverycross1Dad was still very confused, but our conversation was light and humorous and eventually centered primarily on his catheter, of all things. He had been concerned that he was being forced to stay in bed and didn’t realize that he had a Foley catheter. I eventually left the hospital around 7:00 P.M. I found his night nurse and warned her that in spite of my best efforts, Dad had slept for most of the day and that he was wide awake now. She groaned as I left and I wished her luck. I was glad that we had had a good talk and I prayed that it would be a good night for Dad.

 

 

A good day, but with a little too much drama

August 31, 2018. Mom and I arrived at Dad’s room for his tenth day in the hospital shortly after 7:30 A.M. The room was dark and Dad was sleeping. I opened the blinds to let in some light, but the daylight did not affect him. I was able to wake him, but afterward, he seemed uncomfortable. I asked him if he needed a bedpan, and he seemed to indicate that he did. At 7:55 A.M., I summoned the nurse for assistance, but no one answered the page. Thank goodness that Dad’s need for the bedpan was just a miscommunication.

dramacross4At 8:10 A.M., Dr. Tanner, the nephrology resident, told me that Dad had had 2,400 ml of fluid removed yesterday during dialysis. He said that the nephrologists needed to know whether Dad wanted to continue with dialysis or use the diuretics to remove fluid following his discharge from the hospital. If he wanted dialysis, the nephrology team would make the arrangements with the dialysis center. I knew full well what Dad’s decision would be. While he was in the hospital, he probably believed he had no choice in the matter, but I’d bet good money, given a choice,  he would not want dialysis. The problem was that history had shown that he wouldn’t take the diuretics as prescribed, which is what led to his fluid overload condition and his two falls. He had been healthy and active until he quit going to dialysis. I hoped that Mom might be able to sway his decision.

At 8:20 A.M., Maira and Carrie, the nurse and aide (CNA), changed Dad’s dressings and got him ready for the day. While they were changing his dressings, they said that they didn’t like the look and smell of his surgical wound. Maira said that she would have the doctor look at it. Dr. Hunt chose to delegate this task and called upon the orthopedic team to check Dad’s surgical wound. A few minutes later, a couple of orthopedic residents came by and applied a new dressing. They assured us that the wound was fine and should not cause a problem for Dad.

dramacross1During the morning rounds Dr. Hunt said that according to Dad’s CT scan, he had had a stroke in the thalamus. I hadn’t been concerned about the CT scan because I was sure that Dad had not hurt his head when he fell out of bed. I now felt like I had the wind knocked out of me. It seemed like Dad couldn’t catch a break. The doctor said that he planned to call neurology to have them check on Dad. In my distress, I texted my husband Stan about this turn of events, which was probably not fair to him. There was nothing that he could do 160 miles from us, except worry.

Once again, the nurse asked me to help Dad with his morning meds. It was a struggle, but I was eventually able to get him to swallow his aspirin and Midodrine pills. A CNA stops by every couple of hours to check Dad’s glucose level. Shortly after the mid-morning reading, Carrie returned with a container of apple juice that she wanted Dad to drink. Evidently, his glucose level was down to 75, with 100 being normal.

dramacross2So far, the most significant untruth told to us was the statement made by Leslie, Dad’s last ICU nurse. She had assured us that although there was a higher patient-to-nurse ratio on 6 North, they had many CNAs who could attend to patients. Carrie laughed out loud when I asked her about the additional aides. Contrary to the messaging in ICU, the patient floors have five or more patients per RN and as many as 19 patients per CNA. It’s no wonder that the CNAs and nurses appreciated the time that I spent helping Dad to eat and take his meds. These were busy people who relied on family and other patient advocates to assist with patient needs. I was grateful that I was in a position to be with Dad so that I could assist him.

Shortly after the morning rounds, Dr. Harris, a resident from the neurology department, stopped by to assess Dad. Dad was able to push against the doctor and follow a variety of instructions. Dr. Harris said that that the stroke was small and most likely was not the cause of Dad’s confusion, good news that probably improved my blood pressure and stress level somewhat. His current level of confusion was similar to what he had experienced during his previous hospital stay in 2015 and was probably transient and not permanent.

dramacross3Moments before noon, Angie and Judy, the physical therapist and her aide, arrived for Dad’s session. They had barely started when Dad’s lunch arrived, which was typical. I wasn’t sure if he’d ever enjoy a hot meal in this place. Angie and Judy had just had Dad stand up when the neurological team, led by Dr. Jennifer Rasmussen, entered the room. I asked if they could stop by later after his physical therapy session, but the doctor said that they wanted to watch the session so they could see how he responded to physical therapy, so their timing was perfect. After a couple of minutes, Dr. Rasmussen pulled me aside and said that Dad seemed to be doing fine. She added that the stroke could cause sleepiness, but that Dad should not suffer any lasting effects. I was so pleased that it was all that I could do to keep from hugging her.

Shortly after noon, Perry, a transportation tech, arrived to take Dad to Interventional Radiology (IR) to have a tunneled line put in to replace the IV in his neck. From what Dr. Hunt said, the tunneled line posed less of an infection risk. Mom and I accompanied Dad and Perry so that one of us could sign the consent form. We arrived at IR at 12:30 P.M. After waiting 20 minutes, I got someone’s attention and asked if we could sign a consent form so that we could leave for lunch. Mom and I went to the cafeteria to get our lunch, but we ate in Dad’s room. I had promised Dad that we would be there when he returned, and I wanted to keep that promise. Knowing our luck, he’d be alert, and if we weren’t there, he’d give us holy heck.

dramacross4At 1:20 P.M., in response to my earlier text message, Stan texted me to see if we could talk. When he called, he said that he could come up tonight if I needed him. Had I not received good news from the neurologist, I might have welcomed his offer, but I didn’t want him on the road with all the crazies leaving town for the Labor Day weekend. Stan was also relieved to hear that the stroke was very minor and promised that he would come up early tomorrow morning.

While Mom and I were waiting in Dad’s room for his return, we overhead a conversation about room 631 north, which was just a couple of rooms away. Apparently, the room had bedbugs. Ye gods!

dramacross1After Dad was returned from IR, I reheated his lunch, which had been delivered almost two hours ago and was cold. I was pleasantly surprised when I looked up and saw our friend, Marilyn, standing at the door. While she was there, Mom and I learned that the husband of our dear friend Sally had died on August 17. I was acquainted with Sally’s husband, and his passing was a real loss. I felt guilty for being so absorbed with Dad’s hospitalization that I could not console a friend. While Mom and Marilyn were visiting, I helped Dad eat some of the Salisbury steak, pasta, peaches, and some Nepro. He then wanted to taste the pureed chicken noodle soup. I didn’t think that it looked all that good, but he said that it was the best thing on the tray.

While he was eating, I noticed that blood was running down his chest from the dressing that the interventional radiologist placed over the tunneled line. I summoned the nurse, and she called the doctor because the wound seemed to be bleeding profusely. Dr. Hunt called IR, and they said that they would send someone up who could put in a stitch. A couple of minutes later, transportation showed up to take Dad back to IR. Because Dad was bleeding, the nurse accompanied him and kept pressure on the wound. When we arrived at IR, the doctor didn’t want to add a stitch because he thought that it would cause more bleeding. I asked if they could use Steri Strips instead of stitches. The doctor thought that was a good idea and used three on Dad before he applied a clean dressing. Inwardly, I was rolling my eyes. The Steri Strips seemed like such a simple solution. I couldn’t believe that I had to suggest it.

dramacross2We returned to Dad’s room at 4:15 P.M., and a couple of minutes later Dr. Duran and Dr. Tanner, the nephrologist and her resident, stopped by to discuss the possibility of dialysis tomorrow. Because patients were usually too tired for physical therapy after dialysis, I asked them if they would please dialyze Dad in the afternoon so that he could have PT in the morning. They said that they would see what they could do to accommodate my request.

At 5:00 P.M., the nurse asked Mom and me to leave the room while she cleaned up all of the blood on Dad and changed some of his dressings and his gown. Between Dad’s bleeding episode and the handiwork of the interventional radiologist, Dad looked like an extra in a horror movie.

dramacross3When we returned to Dad’s room at 5:30 P.M., his dinner was waiting. As I started to get him ready for dinner, he proceeded to complain about everything, starting with his hearing aids. He then made a huge deal about the notations on his many bandages. When the nurses change dressings, they initial and date the top of the bandage so that other nurses can tell when the dressing was changed and who changed it. From Dad’s vantage point, the writing was upside down, and it annoyed him. I tried for a good 15 minutes to explain that the dates written on the bandages were for the benefit of the nurses, and not him, but without success. During this hospital stay, he frequently latched onto some notion like a junkyard dog and would not let it go. With this issue still unresolved, Mom and I finally said that we had to leave for the day. I was glad that he had had a good lunch because with all of his complaining, he hadn’t eaten much dinner. I hoped that he’d forget about the labeling of the bandages by the time that we returned tomorrow.

 

Some promising improvements toward recovery

August 30, 2018. Mom and I arrived at Dad’s room at 8:00 A.M. Aspen, his nurse, and Amanda, his aide (CNA), were in his room and were changing his dressings and his hospital gown. I noticed that Dad’s breakfast tray had arrived and was still covered. When Aspen and Amanda had finished getting him ready for the day, Amanda and I helped Dad take an aspirin and a Midodrine pill with some of the Nepro on his tray. Nepro is a thick liquid, which helped to make the pills easier to swallow. When Amanda left, I grabbed a bath towel and placed it over Dad’s chest like a large bib. With some help from me, Dad ate most of his Cream of Wheat, a scrambled egg, a few swallows of Nepro, and a few sips of warm coffee. Dad had not consumed any caffeinated coffee for several months, but now I encouraged him to sip the coffee in the hope that it might help him to stay awake. His diet hadn’t restricted caffeine intake and caffeinated coffee was included on his tray, so I assumed that I wasn’t treading on dangerous ground, although assumptions in this place could be dangerous.

glacialspeedcross3Helping Dad to eat was a bit challenging because he periodically fell asleep during the meal. Whenever his eyes were closed, I stopped feeding him. I would not let him put anything in his mouth unless he was awake with both eyes open. When he was finished with breakfast, I noticed that he had dried blood under his fingernails, and I grabbed a washcloth from the linen cart and started cleaning his hands. He bled easily these days, so there was no telling how his nails got into that state.

At 9:30 A.M., I had just sat down after cleaning Dad’s nails when Dr. Hunt arrived. He said that the orthopedic resident had stopped by this morning to change the dressing on Dad’s surgical site and said that Dad’s scar was healing nicely.

glacialspeedcross2Dr. Hunt added that Dr. Garland from hematology/oncology had left a note in Dad’s chart, recommending that they stop giving Dad blood thinners. Evidently, the doctors were unable to determine if Dad had developed heparin-induced thrombocytopenia (HIT). This issue about blood thinners and HIT was frustrating, and it seemed like I couldn’t get a clear answer. Dad had a blood clot in his neck, he seemed to need a blood thinner during dialysis, and he had AFib, yet the doctors were withholding blood thinners. When Mom had a bleed that was most likely caused by Xarelto, the cardiologist just about had a conniption when the neurologist stopped her blood thinner. I can only surmise that every case is different and I shouldn’t try to apply a universal solution to an individual problem.

During Dr. Hunt’s visit, Dad slept like Sleeping Beauty and we could not rouse him. After the doctor left, I decided to get some coffee from the cafeteria to see if that would help keep Dad awake, but I couldn’t wake him enough for him to take a sip. I tried yelling at him and clapping my hands next to his ear, but nothing worked. I found this deep sleeping troubling. We had experienced challenges waking him during his hospital stay in 2015 that turned out to be nothing, but it still made me uneasy.

glacialspeedcross1At 10:30 A.M., Amanda removed Dad’s heart monitor in preparation for his MRI. Because Dad was still sleeping soundly, I assumed that he would be easy to move and would be still throughout the imaging. However, moments later, the door opened and Sharon and Jim, two of my parents’ neighbors, walked into the room. As soon as Sharon said hello, it was as if a switch turned on inside of Dad’s head. Not only was he awake, but he was also alert with moments of clarity. I jokingly asked if they could stay at the hospital with us. During both of Dad’s hospitalizations, he would instantly transform from a confused state or wake from a deep sleep when my parents’ close friends entered the room. I never had a chance to ask anyone about it, but I wondered why friends might have a greater impact on Dad than his immediate family. Their visit with Dad was cut short when the transportation team transferred Dad out of the room for his MRI.

Mom and I visited with Sharon and Jim in the 6 North waiting room for about 45 minutes. When they left, Mom and I decided to wait for Dad in his room. As we entered his room, it sounded like we entered a room full of crickets. That familiar sound meant that Dad’s hearing aids were somewhere in the room, and near each other, and generating a lot of feedback. I eventually found them in the drawer of the bed tray and plugged them into their charger, which stopped the aggravating noise. Aspen later told me that as they were moving Dad from his room, she suddenly remembered Dad’s hearing aids and stashed them in the drawer for safekeeping.

pushmecross1Dad was still awake when he returned from his trip to the x-ray department. Moments after Aspen had him resituated in his bed, his lunch tray arrived. I was relieved that for once he would be able to eat a meal while it was hot. But as luck would have it, Angie and Judy from physical therapy arrived within seconds of the food tray. The hospital had its pecking order of providers and services at the hospital, and so did I. For me, physical therapy trumped food trays, so Dad would enjoy a lukewarm lunch after physical therapy.

The physical therapy team quickly got Dad sitting up on the side of the bed. Before they tried to have him stand, Angie hooked up his heart monitor while Judy adjusted the height of his walker. On the count of 3, they helped Dad stand up. He was still a little bent, but he stood up straighter than he had during his previous session. To help him stand straight, they had him look straight ahead at the large picture on the wall. Angie was able to get him to stand on his left foot and lift his right foot off of the floor. A few minutes into the session, they had a bit of a challenge getting Dad to keep his eyes open. I found it amazing that he could fall asleep during a physical therapy session. After Angie regained his attention, she had him stretch out his shoulders, and then she let him sit down on the side of the bed. After he rested for a few minutes, she had him stand up and then step to the left and then to the right, picking up his feet as he moved. Before they let him sit down again, he marched in place, albeit very slowly.

glacialspeedcross1When he was back in bed, they had him lift each of his legs. Angie said that he did fine, but tomorrow she would like to see him lower them with more control (versus plopping them down on the bed). Because of his severe fluid overload condition before he entered the hospital, he would not have been able to lift his legs. Mom often had to lift his legs onto the bed at night. During this hospital stay, Dad had had several liters of excess fluid removed during his four dialysis sessions. His legs were now much leaner and lighter. I was glad that Mom was here to witness this good session. I had been disappointed that she had missed his first session with physical therapy.

After the therapists left, I was able to help Dad eat some warm soup and mandarin orange segments before the transportation tech arrived at 12:35 P.M. to take him to dialysis. Unless a problem occurred, dialysis sessions lasted about four hours. I assumed that Dad would not return to his room before 5:00 P.M.

After Dad was transported from his room, Mom and I ate lunch in the hospital cafeteria. Under normal circumstances, we would have returned home for a couple of hours, but Mom had an afternoon appointment with her cardiologist, whose office was on the first floor of the hospital.

glacialspeedcross2Shortly before 2:00 P.M., David, the case manager, stopped by Dad’s room with a list of names of rehab facilities. Before Dad could safely return home, he would need a week or two of intensive physical and occupational therapy. We knew that we didn’t want to use Cornerstone, which is where he stayed following his previous surgery. The Brookdale Meridian, which is located less than three miles from my parents’ home, was Mom’s only choice. David wanted us to choose a couple of places, but we asked him to see if this one was available, and if not, we would choose another facility.

As we were walking to Dr. Ebert’s office at 2:30 P.M., my mobile phone rang and it was Jean from the Brookdale Meridian. She had a couple of questions about Dad and his possible checkout date. She also asked if I had any questions. If their care was anything like their responsiveness to new-patient referrals, Dad would be in good hands.

Mom’s visit with Dr. Ebert was basically routine, and she left this appointment with the medication refills that prompted her to make the appointment. Dr. Ebert is also Dad’s cardiologist, and she had many questions about his current status. I had contacted her before one of Dad’s appointments to inform her about his fluid overload condition, and she had tried to reinforce much of what I had been telling him about the consequences of his condition, with little or no effect.

pushmecross2When Dad returned from his dialysis session at 5:15 P.M., he was still wide awake. According to Aspen, he had the dialysis nurse call the nurses’ station a few times to see if his wife was OK. Usually, Dad sleeps through dialysis, so Mom and I were surprised to see that he was awake and alert when he returned. I marveled at the change in him since this morning.

After Aspen changed Dad’s gown and linens, I helped Dad with his dinner. I noticed that it seemed to take him a long time to swallow. When I asked him if he was having trouble swallowing, he said, yes, a little bit. I gave him a few bites of turkey and gravy, beans, and he drank a little Nepro. When it seemed that it was taking him a long time to clear his throat, I asked again if he was having trouble swallowing and he said, yes. When I asked him to explain about the trouble that he was having, he started snoring, putting an end to our conversation and his dinner time. By now it was 6:45 P.M., and Mom and I were tired and ready to go home. On the way out, I quickly explained Dad’s situation to Aspen. When I got home, I texted Adan and expressed some concern about Dad’s problems with swallowing. He responded and said that he would stop by in the morning to check on Dad.

glacialspeedcross3Dad’s days were such a mixed bag. The day could start bad and end bad with intervening good hours, or any combination of good and bad periods. I was frustrated that we couldn’t seem to get one solid good day.

 

Little victories and setbacks during recovery

August 29, 2018. Before going to bed last night, I had washed a load of clothes and then placed them in the dryer with the intention of drying them in the morning. When I woke up at 4:00 A.M. this morning, I was pleased that I remembered the wet clothes, and started the dryer. Life’s little victories seemed important these days.

pushmecross5When Mom woke up at 6:00 A.M., she said that she was exhausted and that she was frustrated that she didn’t have time to do anything around the house. Last night, Stan and I had talked about trying to get Mom to stay at home and rest, so I took this opportunity to suggest that she stay at home this morning, and I would bring her with me to the hospital after lunch. She gratefully accepted my offer.

I arrived at Dad’s room shortly before 7:45 A.M. He was sleeping, but he was easy to wake. After saying hello, he told me that there had been about 15 people in the room overnight, which seemed implausible to me. I later learned from his night nurse that Dad had triggered his bed alarm by getting out of bed, and when she got to the room, she found him on the floor in a “praying” sort of position, probably trying to get back into bed. She had to call for assistance to get him back into the bed, but I doubt that the task required 15 people. However, keeping Dad in bed had proven to be one of life’s most difficult challenges. Thank goodness he didn’t injure himself.

pushmecross4Dr. Tanner, one of the nephrology residents, stopped by this morning and confirmed what the nurse had told me yesterday afternoon. Because of Dad’s low blood pressure, they were unable to remove more than 500 ml of fluid yesterday during dialysis. He said that they were going let Dad’s body rest today and perhaps try another dialysis session tomorrow. Wasn’t it just yesterday that I had prayed that Dad could maintain enough blood pressure to keep removing this excess fluid?

After Dr. Tanner left the room, someone from the food & nutrition department dropped off Dad’s breakfast tray. It was a messy process, but with some assistance from me, he ate about half of the food on his tray. The linen cart for our section of 6 North was conveniently located across from Dad’s room, and the nurses told me that I could use it. Before Dad started eating, I grabbed a bath towel and used it like a large bib, which saved me and the nurses a lot of clean-up time. I was happy to see that in the last couple of days, he had graduated from receiving Nepro through a feeding tube to a tray containing oatmeal, an omelet, an English muffin, a carton of Nepro, milk, and coffee. As nervous as I was about his status, I had to admit that his condition had improved a lot in the past five days.

At 10:00 A.M., I used the call button to summon the nurse. Once again, Dad had slid down the bed and needed to be repositioned. While Aspen, the nurse, was there, I asked her if she had seen the doctor or his PA or any of the therapists. I didn’t want to risk missing any of them by leaving for lunch at the wrong time. Aspen replied that she had not seen any of the providers this morning. I spent the next hour trying to engage Dad in some sort of meaningful conversation while he drifted in and out of sleep.

pushmecross2At 11:00 A.M., Katherine, the occupational therapist, arrived. She had barely started getting information from Dad when Amber, the physical therapist, and her student, Shelby, arrived. The room became a hubbub of activity when the nephrologist also arrived. It was positively uncanny how all of the care providers seemed to arrive at the same time. Thankfully, the nephrologist stopped by, only to confirm what Dr. Tanner, his resident, had said earlier. I was glad that his visit was brief. I was eager for Dad to get started with his physical and occupational therapy.

Within moments of the nephrologist’s departure, a knock at the door announced the arrival of Pastor Tom. When he entered the room, he looked at Katherine and said, “Hi, sister.” It seemed that Katherine was also a member of my parents’ church. I know that it doesn’t make any difference in a person’s care, but I always felt better when I was able to make a personal connection with the health care provider, so Pastor Tom’s visit seemed fortuitous. Pastor Tom stayed only long enough to exchange enthusiastic greetings with my father. Although he was there for only a couple of minutes, seeing him always acted like a shot of adrenaline for Dad, which was just what was needed at that moment.

pushmecross1Amber and Shelby were able to get Dad to sit on the side of the bed. While he sat on the side of the bed, Katherine exercised his arms and checked his toes and legs. Katherine and Amber then worked together to get Dad to stand up, with me cheering him on from across the room. By 11:20 A.M., Dad was exhausted and ready to lie down.

As the occupational and physical therapists were getting Dad resituated and comfortable in bed, Adan, the speech therapist, entered the room to ask if Dad had been receiving his food trays. I told him that the breakfast tray was great, but I questioned the wisdom of giving Dad rice for dinner last night. He agreed and said that he would modify Dad’s diet to dysphagia III so that his trays would not include loose foods like rice. When I asked him if he knew anything about Dr. Hunt, who was starting his week-long rotation today, he said that he thought that the doctor was cool.

pushmecross3So far, I’d seen everyone today that I wanted to see, with one exception: I had not seen Dr. Hunt. However, it was now 11:40 A.M., and I needed to get home for lunch. After a quick lunch, Mom and I returned to Dad’s room at 12:50 P.M. When I reached out to touch his right arm, I noticed that his gown was damp on his right shoulder. When I mentioned the damp gown to Aspen, she said that while I was gone, they tried to give him a pill and some water had spilled on his gown. I don’t know if I could swallow a pill while slumped down in bed, especially if I was in a groggy and confused state. I didn’t question her more, but I assumed that he was able to swallow the pill.

Shortly after 1:30 P.M., Dr. Hunt arrived and began to summarize Dad’s current condition. During his summarization, he mentioned the presence of a blood clot in Dad’s neck, which was new news to me. I knew that he was receiving a blood thinner, but the doctors had only mentioned the likelihood of platelets clotting as the reason for giving him a blood thinner. Doctor Hunt mentioned that he had requested a consult with hematology/oncology to help him determine if Dad had developed an intolerance to heparin or not. He also said that he didn’t want Dad released from the hospital to a rehab facility until we had established a baseline for his kidneys and weight, and a baseline for his mentation. He wanted to know if neurology thought that his confusion was a permanent or transient condition. Because Dad had fallen last night, the doctor wanted to ensure that Dad had not fallen on his head. For that reason, he ordered a CT scan. I was skeptical about the need for the neurology consult and the CT scan. Usually, when Dad fell out of bed, his fall was more like a slide that started with his feet. The cynic in me thought that all of these consultations and tests were ways in which to inflate the hospital bill. As long as the tests didn’t harm or hurt him, I reluctantly agreed with the doctor’s suggestions.

Within the hour, a gurney appeared outside of Dad’s room, and he was transported to the x-ray department for his CT scan.

pushmecross4At 3:15 P.M., a couple of doctors from the hematology/oncology department visited us to talk about some of the problems that Dad might be having with heparin and HIT. They said that sometimes they could substitute Argatroban for the heparin, but in Dad’s case, they thought that this drug was too harsh. Because Argatroban is metabolized in the liver, it would be too hard on Dad’s liver, which had been under stress during this hospital stay. They said that they also had been viewing Dad’s white and red blood cells under a microscope and had noticed a slight change in their shape, which might indicate the start of a cancerous condition. However, the only way that they could know for sure was to order a bone marrow test, and we all agreed that at Dad’s age, we didn’t need to go down this path. They speculated that his liver problems probably started with the sharp drop in his blood pressure the day after his latest surgery. Although his blood pressure had rebounded, it would take more than a few days for the liver to recover.

When Mom and I left at 5:00 P.M., I had some very mixed feelings about the day. On the one hand, he had started his physical therapy, and the doctor was talking about Dad’s discharge from the hospital. On the other hand, we were discussing blood clots, the possibility of a cancerous condition, and the need for a CT scan to determine whether he had sustained a head injury. Although Mom felt better after having spent the morning at home, Dad’s morning had seemed a bit more positive than his afternoon, and I was sorry that she had missed it.

 

 

Out of ICU, but not the sort of day we had envisioned

August 28, 2018. Mom and I arrived at the hospital at 8:00 A.M. This was Dad’s first day out of the ICU, and we were optimistic about the day. When we arrived at room 634 North, Dad was sleeping, and I thought that he looked terrible. His face was more swollen than I had ever seen it. Also, I was concerned about his coloring, so I wondered about his oxygen saturation. We were able to wake him, but he kept dropping off to sleep in mid-sentence. His oxygen mask had been removed, and I didn’t know if he kept dropping off to sleep because of low oxygen, fluid overload, or if he was just naturally sleepy. He complained of constant interruptions during the night and said that someone had come into his room this morning, but I was never sure if he was remembering dreams or reality.

transitionCross1At 8:15 A.M., Conner, Dad’s nurse, entered Dad’s room for the first time since the shift change at 7:00 A.M. Following our introductions, she accessed Dad’s chart and told us that Dr. Jennifer Moran, the attending physician for 6 North, had asked for someone in Orthopedics to look at Dad’s surgical wound vac. It had been in place for more than five days, and it seemed to the doctor that it might be clogged. When I asked her if Dad was scheduled to receive physical therapy, she said that only speech therapy was on his schedule, but she would ask for physical or occupational therapy today.

When I asked if he was scheduled for interventional radiology (IR) to have the clog in his fistula removed, she confirmed that he was on the IR schedule for 1:00 P.M. today. With the IR appointment scheduled for the afternoon, I was fairly certain that Dad would not receive dialysis today. However, his ability to receive dialysis hinged on whether or not IR could clear the clog in his fistula.

transitionCross2I had barely finished speaking with Conner when someone from the Transportation team arrived to take Dad to IR. I should have learned a long time ago that schedules in the hospital were fluid and much like those of remodeling contractors. To help the Transportation aide prepare and move Dad to the gurney, Conner summoned Miguel, Dad’s aide (CNA). I learned then that Dad had indeed remembered reality and that it was Miguel who had interrupted Dad’s sleep early this morning.

Because someone had to sign a consent form before IR could perform the procedure, one of us needed to accompany him to IR. Either one of us could sign, but we both wanted to accompany Dad, who was now sleeping soundly on the gurney. We arrived at IR at 8:35 A.M. Ten minutes later, Nathan, an IR nurse took Dad’s vitals and obtained some background information about Dad from us.

transitionCross2One of the interventional radiologists is a member of FUMC-Temple, my parents’ church. I was pleased when I saw that it was Dr. Dollar who entered Dad’s bay. I reminded him that Dad had been a patient of his twice before and told him that Mom and I had attended his daughter’s confirmation. We joked that the pastor would give the doctor hell if the procedure didn’t go well. Before Mom and I left Dad, Dr. Dollar mentioned that because the attending physician wanted to know if Dad had Heparin-induced thrombocytopenia (HIT), they would test him for that. Because Dialysis patients usually received Heparin before and during dialysis to prevent blood clots, they could develop HIT over time. We woke Dad, kissed him, and let him know that we would be waiting in his room for him. At 9:20 A.M., Kristi, the IR surgical nurse, wheeled Dad from his bay and Mom and I found our way to the x-ray waiting room.

Mom needed to have some of her heart medicine prescriptions refilled. Unfortunately, her primary care physician who wrote the prescriptions had recently retired. I thought that Mom’s cardiologist should prescribe all of her heart medications, and we decided to schedule an appointment for Mom to see her. Because Mom’s cardiologist works in the Scott and White Heart Center, which is located on the first floor of the hospital, we decided to spend some of our wait time scheduling an appointment.

transitionCross2At 10:25 A.M., Mom and I walked back to the x-ray waiting room to check on Dad’s status. We were told that they were almost finished and that we could wait there to speak with the surgical nurse. A few minutes later, Kristi, who had assisted Dr. Dollar, said that they were able to remove the clot and that he should be able to have dialysis at any time, which was excellent news. Because this procedure had been successful, Dad would not require another procedure to insert a dialysis catheter, which could have increased his odds at contracting an infection.

We arrived at Dad’s room about 15 minutes before he did and in time to speak to the nephrology team, which was making their morning rounds. They asked us if we knew the results of Dad’s procedure. When I relayed what Kristi had told us, they said that they would schedule Dad for dialysis this afternoon. I had been very worried about Dad’s apparent fluid overload condition this morning and was pleased that he would have some of that excess fluid removed today. He had had a lot of dialysis in the eight days that he had been here. I prayed that he could maintain his blood pressure until all of the excess fluid was removed.

When Dad returned to his room, Conner changed the bandages that protected his recent skin tears and took his vitals, which were great. She also said that she would remove the annoying wound vac that had been left on by the orthopedic surgery team. It didn’t seem to be helping Dad’s situation and was just another annoyance for him.

transitionCross1Mom and I left for lunch at 11:30 A.M. so that we could get back to Dad’s room before he went to dialysis at 1:00 P.M. However, when we arrived at Dad’s room at 12:45 P.M., he was already gone. At 1:00 P.M., Conner stopped by Dad’s room. She told us that she had just returned from accompanying him to the dialysis room, and would be glad to take us there so that we could be with Dad. I had a deadline to attend to and opted to stay in Dad’s room while Mom went to sit with Dad.

At 2:30 P.M., Mary, a hospital pharmacist, came to Dad’s room to ask me about his at-home medications. She wondered if Dad was using more than one pharmacy because most of his medications had not been refilled in quite some time. I found this news disturbing, yet not surprising. Dad often (defiantly) said that he was not taking his medications. There was one, Renvela, that I hoped that she would find had been refilled at the Veteran’s Administration Hospital, but I wasn’t holding out much hope.

transitionCross2At 3:40 P.M., Dr. Potter and Dr. Murdette stopped by to check on Dad’s fistula. Dr. Potter is Scott & White’s new transplant surgeon and had replaced Dr. Gregory Jaffers, who had recently retired. The transplant team performs the fistula surgery, and Dr. Jaffers had performed Dad’s fistula surgery in 2016. Dr. Potter said that he had been in surgery all day and hadn’t had a chance to see Dad and had hoped to meet him. I assumed that Dr. Potter had heard about the clot in Dad’s fistula and thought that he should meet him should he have to repair the fistula. I told him that the IR procedure had gone well and that Dad was having dialysis now.

Dad and Mom returned from dialysis at 5:15 P.M. As Conner was getting him resituated in the room, she told me that they were able to remove only 500 ml from him today because his blood pressure kept dropping. After receiving that disappointing news, I asked her about the results from his latest labs, which were run this morning. It seemed that his WBC count had jumped from a normal range of 10 yesterday to an elevated 14 this morning. I was very concerned that Dad was fighting a new infection.

transitionCross1Dr. Moran stopped by at 6:15 P.M. I expressed my alarm at Dad’s elevated WBC count, but she didn’t think that it was an issue because he didn’t have an elevated fever and his blood pressure was good. She told me that today was the last day of her rotation. Starting tomorrow morning, Dr. Hunt would take over as the attending physician. If Dad was developing an infection, she said that Dr. Hunt would be a good attending physician for Dad; in addition to being an internist, he was also certified for infectious diseases.

Mom and I left the hospital at 7:15 P.M., tired and unsure of Dad’s status. I hoped that Dad’s uptick in his WBC count was of no concern. Mom and I were both tired, and I was now worried about her continued weight loss. She suddenly seemed frail to me and she had no energy. She also had no appetite and I could not get her to eat more than a couple of bites of dinner; however, she did eat an ice cream cone.

transitionCross3I had only planned for a short trip to Temple for Dad’s surgery on August 22, and I was now out of clean clothes. It seemed like my trip would be extended for some indeterminate time, so I had to wash some clothes before I could go to bed. I was tired and frustrated and capped off my evening by being a jerk and snapping at my exhausted mother.

Before going to bed, I called my husband, Stan, and updated him on the activities of the day. Before we hung up, Stan said that tomorrow would be a better day. From his lips to God’s ear.

 

 

A good day in the ICU gets Dad one step closer to a room on the patient floor

August 27, 2018. Mom and I arrived at Dad’s room around 8:30 A.M. Dad was a little confused about where he was and why he was there, and I spent a lot of time trying to explain his situation to him.

hip1At 9:50 A.M., Adan arrived at Dad’s room with Emily, his trainee, to conduct a swallow assessment. I was relieved to see him and knew that Adan would conduct a proper assessment that wouldn’t adversely impact Dad. Before he started, Adan left the room to review Dad’s chart. Within moments of his return, the doctor and his entourage of residents and other providers stopped by Dad’s room for morning rounds, which meant that Adan had to postpone his assessment. After conferring with his associates for a few minutes, the doctor told me that Dad’s hemoglobin and platelets were low. It seemed counterintuitive to me, but the doctor said that he’d probably order blood thinner for Dad to address both problems. Because Dad’s fistula had clogged during his last dialysis session, the nephrologist had entered an order for Dad to go to interventional radiology (IR) to have his fistula checked out. If Dad was lucky, clearing out the clog would be a simple process. If the interventional radiologist could not clear the clog, he would need to insert a dialysis catheter in Dad’s neck. I said a silent prayer for Dad’s good luck.

Shortly after the doctors left, Adan and Emily returned. In case a patient aspirates fluid during a swallow study, it’s important to have a clean mouth so that a minimal amount of bacteria goes into the lungs. Because Dad had not brushed his teeth since he arrived five days ago, Adan had him brush his teeth before starting the test. After observing Dad drink some water, Adan said that he had a productive cough and a good swallow. They then had Dad drink some cranberry juice, followed by some pudding. I was thrilled when Adan said that he had not observed any sign of dysphagia, and would order a menu for him. He warned us that food trays get a low priority in the ICU, so he couldn’t guarantee when Dad would get a meal. As Adan left the room, he said that Dad was probably the healthiest person on the floor, which was the best news that we had heard since Dad entered the hospital.

At 10:15 A.M., I saw a familiar face walk by the door. I quickly left the room and was able to stop Dr. Heath White. We had had quite a history with Dr. White in 2015. He had tended to Mom after her stroke and then had periodically been Dad’s attending physician for a couple of months. We chatted in the hall for a few minutes, and he said that he was surprised that it had been three years since he had seen Dad. While we were talking, he pulled out his phone to peruse Dad’s charts to see when he had last added a note to Dad’s chart. As he left, he told me to contact him if we ever had any pulmonary problems. It was good to see a familiar face, and I regretted that he had not had an opportunity to see Dad last year when he looked and felt so well. As much as I liked Dr. White, he had often had negative predictions about Dad’s prognosis.

hip3At 11:00 A.M., Leslie removed Dad’s feeding tube. She then told me that she had started Dad on a new blood thinner to prevent clotting. Because his hemoglobin was low, he might receive a blood transfusion. We had been down this low hemoglobin path three years ago, and I hoped that one unit of blood would do the trick.

Now that Dad was more alert, he talked a blue streak. Not everything that he said was based on reality, and he was still confused about where he was. He thought that he would be going to a hotel and that he would be coming home with us tonight. However, when he and Stan talked about sports or chores that Stan could do around the house, Dad was as lucid as the rest of us. I couldn’t wait until he was moved out of ICU, an environment that often contributed to confusion and delirium.

home4Cross4Shortly before noon, an aide from food service brought Dad his lunch tray. His first meal in five days consisted of puréed chicken noodle soup, milk, iced tea, and orange sherbet. Because he thought that the consistency of the soup was like a milkshake, he decided to use a straw to eat it, which proved to be very messy. While holding the bowl, he tipped it, and half of the soup ended up on the bed. He was able to consume some of it before he devoured the sherbet. Eating again was an important milestone. Although it had been a messy meal, I was practically giddy with relief that he had been able to eat.

After Dad was cleaned up from his lunch, Mom, Stan, and I went home for our lunch. Stan then left Temple around 1:30 P.M., hoping to beat Houston’s afternoon rush-hour traffic. Shortly after he left, I received a text message from Pastor Tom. He indicated that he had spoken with Dad, but he wasn’t sure what was going on and asked me to call him to clarify Dad’s status. Dad was pretty lucid when it came to talking about yard maintenance or sports, but he was pretty confused about his status and what was happening to him. I could understand how Tom would also be confused following a conversation with Dad.

When Mom and I returned to Dad’s room shortly before 3:00 P.M., Dad was sleeping. He woke up to let us know that he would be receiving some blood and platelets. Leslie came in a few minutes later and confirmed that he had been typed and matched and was ready to receive the transfusion when the blood arrived. I was pleased that Dad could accurately relay some information to us about his status.

hip5Dad’s status had improved dramatically. He no longer required medication to elevate his blood pressure, and now he was eating. He was still a sick puppy, but not sick enough to warrant ICU care. I had hoped that Dad would be moved from ICU to a patient room, but now that move seemed doubtful for today. The hospital generally does not like to move patients from ICU while they’re receiving blood. It was getting late, so we were not sure if the IR schedule could accommodate Dad.

As we were preparing to leave the hospital at 5:30 P.M., Leslie told us that Dad should be moved from ICU to 634 North before the shift change. If his food tray arrived after the shift change, she said that she would take his dinner tray to him. Although the 6th floor had a higher patient-to-nurse ratio, she said that they had many more aides and that one of the aides would assist Dad with dinner. When I asked about the blood transfusion, Leslie said that he should be able to receive blood overnight.

steadyCross2When I returned to my parents’ house, I wrote an enthusiastic email message to my sister-in-law, telling her about the turnaround in my father’s health in the past couple of days. Today had been a great day. Dad hadn’t had his fistula checked out, but it felt like he had turned a corner. Mom and I both felt optimistic about Dad’s prognosis.

 

Are we about ready to leave the ICU?

August 26, 2018. After having spent an enjoyable evening in Johnson City, Stan and I left for Temple at 7:35 A.M. We arrived at my parents’ home at 9:40 A.M., unloaded the car, and headed to the hospital. Unfortunately, we just missed seeing the doctor during rounds. Dad was on dialysis, which had started at 6:00 A.M. Rachel, the dialysis tech, stopped by shortly after 10:00 A.M. to check on Dad, and said that he hadn’t put up any fuss when she started the SCUF dialysis session. I was glad that he was having more fluid removed and was encouraged that he could withstand the loss of the fluid while still maintaining adequate blood pressure. I had hoped that Natalie would be back as Dad’s nurse and was a little disappointed to see that the name Leslie had replaced hers.

steadyCross1Dad had slipped down the bed, and I used the call button to summon a nurse to reposition him. Instead of Leslie, a male nurse and a female aide entered the room. I immediately recognized the nurse as Fred and said that the last time that I had seen him, his wife had just had a child. He recognized me but said that he didn’t think that I was correct because his youngest daughter was three years old. When I told him that Dad had been a patient here in 2015, he said that he hadn’t realized that that much time had elapsed. It seemed like a mini-homecoming in some alternate life.

Dad talked a lot this morning, and most of what he had to say was pretty depressing. He said that he thought that he and Mom had changed mentally, and he implied that his life wasn’t worth saving. Today was the first day that he’d been talking since the surgery, and I asked him to wait another day before we discussed these serious topics. This talk was also upsetting Mom, and I wanted to redirect the conversation.

hip1Because we had missed the morning rounds with the doctors, Leslie provided us with an update. They had changed his antibiotic, but his white blood cell count was still trending upward.  I told her that I had fed Dad some gruel on Thursday morning and was wondering if he could begin eating again. She said that she would try a bedside swallow test to see if he could swallow a pill. I told her that with his history of aspiration, we would prefer to have Speech involved in any swallow test. If she did do the bedside swallow test, I asked that she not use a straw, which changes the shape of the mouth during swallowing and can affect the test.

The nephrologist and his resident stopped by shortly after 11:00 A.M. The doctor asked Dad how he was doing, which was a mistake on his part because Dad started complaining about the hospital, beginning with his stay in 2015. When the doctor explained that Dad was having dialysis to remove fluid, Dad started to give him some attitude about having dialysis. While I was explaining to Dad about the stress that the excess fluid had on his organs and why he needed dialysis, the doctor left. I was certainly glad that Dad was awake and somewhat alert, but he was not the greatest patient in the world and was a bit challenging to control. When Dad asked me what we were going to do for the rest of the day, he got a little annoyed when I said that he was going to stay in bed. By 11:45 A.M., the cold of the hospital was beginning to bother Mom, so she and I went home for lunch.

hip2When we returned to the hospital at 1:30 P.M., I was surprised to see that Dad was off of dialysis. Leslie said that because his fistula had clogged, they had stopped his session 90 minutes early. Still, they were able to remove 2,225 ml. During the past two days, just over 4 liters of fluid had been removed, and Mom and I saw a noticeable difference in the size and weight of his legs.

At 2:50 P.M., Dad had slid down in the bed, and I called for a nurse to reposition him. While the nurses were preparing to move him, they noticed that he was bleeding slightly from his fistula in his left arm. The moment that they moved him, it was like a dam broke and the fistula started bleeding—a lot. The nurses called for some assistance, and Angel, one of the hospital’s top 25 nurses, entered the room. When Angel called down to the dialysis center for advice on how to stop the bleeding, he was told to keep applying pressure until the bleeding stopped. When Rachel, the dialysis nurse, showed up at 3:05 P.M., she said that his fistula had seeped just slightly yesterday, but she saw no real bleeding. By 3:25 P.M. the bleeding had stopped, enabling the nurses to replace his bandages and change his gown and bed linens. About 30 minutes later, Christina, the dialysis resident, stopped by with Rachel to check the fistula.

hip5At 4:30 P.M., Leslie stopped the Levophed drip, which had been keeping his blood pressure at a safe level. She had already reduced it to the lowest dosage earlier, and Dad had been maintaining a MAP of 79 (80 being perfect). Some 15 minutes later, his MAP had dropped to 68. As we left for the day, I hoped that Dad’s blood pressure would stabilize on its own and not dip below a MAP of 68.

As tired as we were when we left at 5:00 P.M., I dreaded leaving him alone. Historically, most of his problems developed when we weren’t there to watch over him. I was so anxious when I wasn’t with him that I was starting to rely on sleeping pills to sleep.