We’ll take your danged ten percent odds!

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.

familyShortly 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_thumbWhen 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.

 

Slipping back into Hell

July 23, 2015. Dr. Anderson called me at 5:30 A.M. and told me that they still were unable to raise Dad’s blood pressure. His EKG had changed and the doctor suspected that Dad had suffered a heart attack. The doctor wanted to know how aggressive we wanted to be in his treatment. They were limited with what they could do at the CCH, and if they kept doing what they were doing, Dad would die in one to two hours. They might be able to help him at the main hospital (Memorial), but with his age and current situation, Dr. Anderson recommended that we think about how much more we should so. I woke Mom to confer with her, and she wanted to do everything possible. I called Dr. Anderson back with our decision, and he said that Dad would be at Memorial in about an hour. Considering that he projected one to two hours for my father to live, the hour-long trip to the other hospital made me a little nervous.

hell2When I got off the telephone with Dr. Anderson, I texted Pastor Don and my husband about Dad’s situation. Mom and I got dressed and headed to Memorial. We didn’t know where to go, so we headed to what we knew: the Cardiothoracic Intensive Care Unit (CTICU) nurses station in the north tower of the hospital. We arrived at 5:50 A.M., and it occurred to me that we arrived at the same time on May 6 for Dad’s original surgery. We asked the CTICU nurses about Dad’s whereabouts, but either he had not arrived, or he was not yet in their system.

While at the CTICU nurses station, we saw a couple of nurses and respiratory therapists that we knew, and they showed us to the Medical ICU (MICU) waiting room in the south tower. While we were waiting, personnel from the day shift started arriving. As Kelli, one of the charge nurses from CTICU, walked through, she was startled to see us. We quickly apprised her of Dad’s condition, and she hurried off to see what she could learn about his whereabouts.

At 8:00 A.M., we were still sitting in the MICU waiting room, waiting to learn more about Dad’s condition and see him. We saw Jordan, a PA, and Dr. Sai, both of whom said that they would check on Dad and get back to us. When we were finally called to Dad’s room, we were met by Dr. Sanchez, who was the presiding physician that week. He said that Dad was stable, but his condition was grave and the doctor didn’t think that Dad would survive. He said that they would know more in 48 hours. I was so anxious for anything positive, the fact that he even mentioned a time beyond today seemed like good news.

hell2bEvidently, when Dad arrived from the CCH, he was on three vasopressors and his MAP was in the 40s, which is way below minimum. Now, he was receiving more than the maximum dosage of five vasopressors to keep his blood pressure at a MAP of 65, which is a minimum level. When asked by Dr. Sanchez about the extent to which we would go, we said that we wanted to do everything possible, stopping short of restarting his heart, should it stop.

Our first couple of hours in Dad’s room were like a tragic welcome-home event. Addison, one of Dad’s speech therapists, stopped by to say “hello.” Adan from the CCH had called her and told her about Dad’s episode. Dr. Velazco, another of the physicians who rotates through the ICU, stopped by. He still wore scrubs from surgery and was very upset about Dad. Occasionally, we were asked to leave Dad’s room, and during those times I kept encountering nurses and therapists from his earlier stay at Memorial. They were all shocked and generous with their supporting hugs.

After Dr. Sanchez and his entourage left, we got to know Tina and Andrea, the two nurses assigned to Dad. I really liked them and the way in which they cared for Dad. For all intents and purposes, the doctors had told us that Dad was a lost cause, but you wouldn’t know it from these two women. I also came to depend on Charis, a resident who was assigned to Dad. Lynette, the case manager, was also very attentive and told us to contact her if we needed anything. I suspect that she thought that Mom and I would need her assistance when Dad died.

hell2cThroughout Dad’s stay in the Scott & White system, I had developed a steely resolve to stay positive and to keep my parents positive. The last six hours had severely cracked my armor. When Charis first entered the room to talk with us about Dad and how the doctors were expecting his death, I sort of lost it. While fighting back tears, I started telling her that what I was feeling was like Orpheus watching Eurydice slipping back into Hell. The only light moment of the day came when my mother commented about the startled look on Charis’ face when I interjected Greek mythology into her briefing.

As the day progressed, Dad’s condition seemed to worsen. The doctors continued to administer broad-spectrum antibiotics. Only 24 hours earlier, his WBC count was 5.6. It was now approaching 13 and he was non-responsive to pain. In addition, he had developed septic shock, severe acidosis, and his liver was in shock. The doctors thought that putting him back on dialysis might help with the acidotic condition. Shortly before noon, Carlos, the dialysis nurse, arrived and started the eight-hour dialysis session. Dad’s blood pressure dropped, so they stopped removing fluid.

Around 12:30 P.M., Dad seemed to recognize me. I took that opportunity to tell him that I had purchased an indoor skydiving session for my husband for his birthday. He made a face, which seemed like the response that I would have expected from him. Around 1:00 P.M., Andrea was able to get him to squeeze her hand. She also touched some gauze to his eyes to see if he would react. Bases on his responses, Andrea thought that, neurologically, he was doing better. He had not reacted to any type of stimuli, including pain, when he was admitted.

hell2dWhen Mom and I went to lunch, we stopped by the CCH to pick up Dad’s belongings and flowers. Live flowers are not allowed in the ICU at Memorial. When we returned to Memorial around 2:30 P.M., he was wrapped in a Bair Hugger (heating blanket). His core temperature was now too low, partly because of the dialysis, and they needed to raise it.

During the remainder of the day, a variety of therapists and specialists stopped by to take blood and administer trach care and oral care.

As news of my father’s return spread through the ICU, more nurses stopped by his room. One unexpected visitor was Peggy, a hospital employee who monitored central (PICC) lines. She stopped by the room because she recognized us. We chatted a few minutes, and Mom and I quickly learned that she was not a fan of the CCH. She encouraged us to contact Patient Relations about the CCH and our experiences there.

Mom and I went back to the house for a late dinner break and didn’t return to the hospital until 8:00 P.M. We didn’t plan to stay long, but felt that we needed to meet his night nurse, Rebecca. Dad was off dialysis and his blood pressure was up, but it dropped sharply when Rebecca tried to start weaning him off of the vasopressors. She decided that she would probably keep the levels the same during the remainder of her shift, which would end at 7:00 A.M. When I asked her about the results of his ABG tests earlier that day, she said that his pH levels were still “out of whack,” which was disappointing news. We had hoped that the dialysis treatment would have improved his acidotic condition. Before Mom and I left for the night, we visited with Charlie, the respiratory therapist, while he administered trach care and an oral treatment. We stayed until about 8:30 P.M.

I don’t recall what we did when we returned home, but after the day that we had just endured, I suspect that a glass of wine was involved.

From the bum’s rush to a snail’s pace

Thursday, June 18. Mom and I drove in separate cars to the hospital and arrived shortly before 8:00 A.M. Dad was still sleeping and still on CPAP. Although I knew that the CPAP gave his lungs a break, it made him look as if he was breathing hard. Blair, his nurse, told me that his WBC count was down to 9,900, which put him back into normal territory. According to Dr. Sanchez, Dad had had an uneventful night, and was doing much better today.

Janie was the respiratory therapist and, for some reason, Dad just didn’t cotton to her. He especially disliked the deep suctioning and respiratory treatment that she administered that morning. That good time was followed by the always fun mouth cleansing. Although Dad hated it, mouth cleansing is very important for patients who aspirate. If you’re going to aspirate your saliva, it should be as clean as possible. At the end of this session, Janie switched Dad from CPAP to the trach collar so that he could breathe independently. Being on the trach collar also meant that we could attach the speaking valve.

Dr. Walker, the nephrologist, said that Dad would need dialysis this day, and he’d also need to visit IR to have his dialysis catheter changed out, which was one of the prerequisites for his transfer to the Scott & White Continuing Care Hospital (CCH). She was pretty sure that Dad wouldn’t transfer to the CCH today. She added that there was a pretty good chance that they would dialyze Dad tomorrow, too. The CCH dialyzed on Monday, Wednesday, and Friday. Having dialysis tomorrow would get him in sync with their schedule.

Dad still had his chest tube, and he couldn’t leave until it was removed. Dr. Sanchez assured us that he would remove Dad’s chest tube later in the day, but I would have to hear about it second hand. I had to return to Houston for a couple of days, and I left the hospital at 10:00 A.M. As I was turning onto FM 93, which intersected with my parents’ street, I saw two ambulances turn down their street. I learned later that day that their next-door neighbor had died from a gunshot wound. It was almost too much to take in.

Dad completed his second four-hour dialysis session. The doctor thought that he tolerated it “fairly well,” but these four-hour sessions left Dad drained. Dad had a little difficulty breathing during the afternoon and was returned to CPAP support. He had lost a little blood during the catheter change out, and the IR department had a difficult time stopping the bleeding. The blood loss was enough to cause his hemoglobin level to drop, which meant that he required another unit of blood.

Friday, June 19. Dad had slept well during the night on CPAP support and was moved to the trach-collar at 7:00 A.M. According the nurse, Dad’s WBC count was down to 9,000, which was terrific news. This good news was tempered by the arrival of the dialysis nurse. As the nephrologist had predicted the previous day, Dad had more dialysis during the morning. Although Dad seemed to be progressing well, the doctors decided to delay his transfer until Monday so that they could monitor his hemoglobin levels. Later that day, Sandra, one of the church’s lay leaders, stopped by to visit Dad. This visit was the first of many from this exceptional and caring woman.

June 20. Stan and I drove from Houston to Temple separately—Stan arriving before lunch. When I arrived midafternoon, I was cautiously alarmed when I learned that Dad’s WBC count had ticked up 400 points to 9,400. Although I was assured that it was not statistically significant, any increase in his WBC count made me nervous. Mom said that he had had some pretty thick secretions, and the respiratory therapist had suctioned several times before I arrived.

We returned to the hospital after dinner so that we could say good night and speak to his night nurse.

Father’s Day, June 21. Mom and I arrived at the hospital and visited with Dad before we attended church. Dad was sound asleep, but we were pleasantly surprised to see Daytime Natalie in his room when we arrived. For the past few days it seemed that we were getting a string of new nurses—people who didn’t know him or his medical history. Natalie told me that Dad had received deep suctioning earlier that morning. She also told me that his WBC count was up to 11,400, a 2,000 point increase from the previous day.

Compared to a of couple days earlier, today he seemed lethargic and very sleepy. When he finally woke up, he kept saying that a procedure had gone wrong during the night, and he demanded to see the doctor. Because there was no evidence of any procedure during the night, when Dr. Velazco arrived, he ordered another respiratory treatment, an ABG, and an X-ray for Dad. Stan arrived shortly thereafter and Mom and I went on to church. Father’s Day wasn’t starting out as well as we had hoped.

After lunch, the three of us returned to the hospital to celebrate Father’s Day. Dad opened his cards, but he didn’t want to open any gifts. It was raining when Stan left for Houston around 3:00 P.M. We didn’t like to leave our cats at home alone too long. Stan had made this trip several times since Mother’s Day, but I never relaxed until I knew that he had arrived home safely.

It hadn’t been the greatest Father’s Day. Other than hearing that Stan had made it home safe and sound, the best news of the day was that the ABG didn’t show any problems with Dad’s blood gases. Mom and I left for the evening at 5:00 P.M. feeling just a little depressed. It seemed like we kept meeting obstacles that we couldn’t overcome.

Preparing for the next phase

June 14, 2015. Because it was Sunday, the trip to the hospital was a stop en route to church. Because we attend the late service, Mom, Chris, and I arrived a little later than usual to visit with Dad. Dad’s nurse, Erin, was new for us. We learned that she usually worked in the Medical ICU (MICU) with another favorite MICU nurse, Drew. We were developing a real respect for the nurses in the south tower.

Dad’s vitals weren’t stellar, and his WBC count was up to 14,000. Although he had breathed on his own during the night, he was now back on CPAP and seemed to be struggling to breathe, although his oxygen saturation was still at 95%. Dr. Sanchez thought that maybe Dad’s WBC count was elevated because of his strenuous breathing, or perhaps because of the infection and fluid in his lungs. I’m not a doctor, but I suspected that the infection was the culprit.

For the past 38 days, Dad had had a variety of goals having to do with strength and infection levels, and the like, but now the goals were starting to change. The hospital staff was intent on moving him out of CTICU, but his respiratory condition prevented him from moving to a different floor. Instead, he needed to move to a continuing-care hospital. However, before he could transfer, he had to reach some specific benchmarks. Among other things, he had to be able to withstand the four-hour dialysis sessions and his hemoglobin levels needed to stabilize. To reduce the risk of infection, the doctor also ordered the changeout of Dad’s central line and he removed the A-line from Dad’s right hand. Dr. Sanchez also wanted Dad to breathe on his own until 8:00 P.M. To enable that goal, my father received some pretty aggressive respiratory treatment, which was followed by him coughing up of a lot of thick secretions.

YankerFamilyWhen we arrived at the hospital on Monday, June 15, Dad was upset because the Yankauer (yonker) wand was missing from his suction line. When you’re recovering from pneumonia, expelling secretions from your lungs is a big deal. In addition, the trach tube made it more difficult to handle the normal secretions that build up in the throat. The nurses would tell him to use the call button when he needed assistance, but when he used it, you’d hear, “Yes? What do you need?” Uh; he couldn’t speak, so when he was alone, he had to wait until someone happened by.

Dad’s WBC count had dropped to 11,900, but he was having pain around his chest wound. His hemoglobin had also dropped again, which puzzled the doctor. It seemed like he was losing blood, but they couldn’t determine a clear source. To rule out a bleeding ulcer, Dr. Sanchez ordered an esophagogastroduodenoscopy, but it didn’t identify any evidence of bleeding in his stomach. On the flip side, Dad’s oxygen saturation and MAP remained good all day.

Among the entourage of doctors, pharmacists, residents, and fellows was the case manager, Laura, and she started becoming a more visible participant. She brought us literature about the Scott & White Continuing Care Hospital (CCH) and encouraged us to stop by and visit with April, the CCH nurse manager.

trachPMSpeakingValveDuring the afternoon, Svenja, the Trach Goddess of Scott & White, stopped by and downsized Dad’s tracheostomy tube. She discovered that the current tube was stuck, and she had a little difficulty removing it. Fortunately, removing the tube drew only a small amount of blood, and the new tube was inserted quickly and without any difficulty. The new tube had numerous benefits: it had a smaller outer diameter, a larger inner diameter, and could accommodate the Passy-Muir speaking valve. When Svenja attached the speaking valve to the tube, Dad’s voice was strong and clear. Dad had been unable to speak since the morning of June 8. Even the nurses were thrilled to hear him speak again.

pmSpeakingValveAs much as he was pleased to talk, he was equally disappointed when the nurse removed the speaking valve. Besides his not being able to sleep with the speaking valve in place, the valve also had to be removed whenever he received any sort of oxygen support.

My cousin and I stayed at home after lunch that Monday. While Chris gardened and I worked from my parents’ office, my mother returned to the hospital; however, she came home early. She didn’t think that my father looked well and she wanted me to return to the hospital with her. When we arrived, his room was empty. Dad had been moved to IR, where they inserted another tube in his right chest. Because they took him without signed consent, we were escorted through the back hallways and elevators to the IR department so that Mom could take care of the paperwork. Dad finally returned to his room shortly before 6:00 P.M. Dr. Sanchez said that they’d probably have to tPA this chest tube, too. On the trip back to the hospital after dinner, we had stopped to admire a rainbow. It had seemed like such a hopeful sight. I guess we take our signs where we can find them.

IMG_0789Tuesday, June 16, was another day of mixed news. Dad was talking and his WBC count was down to 8,300—a normal reading. The speech therapist, Holly, stopped by and administered a bedside swallow study—the first since he received the tracheotomy tube. Unfortunately, he failed it miserably. He coughed up pretty much all of the liquids. Holly gave us some very large, lemony Q-Tip-looking thingies to swab the back of his throat. Although just thinking about it makes you want to gag, it was supposed to stimulate swallowing. This therapy was to be repeated about five times daily.

We still hadn’t seen the doctor when we left for lunch at 11:15 A.M., but we needed to leave. Chris, my cousin who had been visiting for the past week, was leaving at 12:30 P.M. to return to Phoenix. The airport is about 60 miles from my parents’ house, so we were fortunate that Chris was able to hire a limousine service to transport her. Then, Mom and I were home again, alone.

swabsticks2When we finally saw the doctor at 3:45 P.M., he tPAed Dad, which eventually released another 400 ml of fluid from my father’s chest. Before we left for the night, I swabbed the back of Dad’s throat with the lemon swabs. Dr. Sanchez told me and Mom that Dad’s transfer to the continuing-care hospital was imminent and to visit the continuing-care hospital the next day. At this point, we’d become weary of this place and were anxious to leave and were anxious to visit Dad’s new digs.

On Wednesday, June 17, Mom and I held our breath as we entered the hospital. It was hot outside, the parking lot was misery, and we really never knew what to expect when we got to Dad’s room. On this day, Dad’s WBC count had inched up to 11,500.

Much of our time that day was spent talking with Laura, the case manager, about moving Dad. We had many questions about payment and Medicare benefits. After Mom ran some errands, I picked her up at 11:30 A.M., and the two of us met with April, the nurse manager at the CCH. She seemed very pleasant, and we felt like this would be a good place for Dad to recover before heading home.

I worked from the house for the rest of the day, and Mom stayed with Dad. Dr. Sanchez told Mom that the X-ray showed that the chest tube and tPA had done their job. He also said that on the following day, Dad would have his chest tube removed and the dialysis catheter replaced to reduce the risk of infection. If all went well, he’d receive typical dialysis and be transferred to the CCH later in the day.

Although we were glad to be leaving Scott & White Memorial, it felt as though we were getting the bum’s rush.

It seemed like good times were right around the corner

 

It was Thursday, June 11, 2015. Mom, Chris, and I arrived at the hospital in time to see Dad on dialysis and the infectious diseases (ID) doctor in my father’s room. She said that Dad’s white blood cell (WBC) count was back up to 12,000, and that he still had a lot of infection. She then looked at me and asked if there was any correlation between dialysis and his WBC count. It seemed like a strange question coming from a doctor and I was slightly puzzled that she’d ask me. Her visit was followed by Dr. Issac, the nephrologist, who said that Dad still wasn’t producing enough urine. He’d need to produce at least twice as much for them to consider stopping dialysis.

When Dr. Velazco arrived, he said that Dad’s spontaneous breathing was good and his vitals were good, except for his WBC count. Because recent X-rays showed that the pneumonia had not cleared up as much as they had hoped, the doctor scheduled a CT scan for the next day. The CT scan and tomorrow’s CBC would be very telling about his condition. Before the doctor left the room, Dad told him that his trach tube hurt, which was remedied with Tylenol. When I mentioned my concern for our inability to get past three or four good days, Dr. Velazco said that today was most likely a good day. I perked up a bit when he told me that Svenja, the trach nurse (who I nicknamed the Trach Goddess of Scott & White), would stop by the next day to fit Dad for a speaking valve. Although the medical staff thought that we had a great letter board, it was a tedious form of communication. Dad was moved to the chair at 4:30 P.M. and was still there when we came back after dinner. As bad as sitting is for a person, it’s a danged sight better than lying in bed. Maximum chair time was a daily goal for us and the doctors, although Dad was not always onboard.

keysThat day I also accompanied Mom to see the neurologist. For the past month, our lives had revolved around my father, and it was easy to forget that Mom had suffered a stroke—one that doctors had diagnosed as serious and life altering. In retrospect, I feel that I deprived her of the rehabilitative care that she deserved by not pursuing out-patient therapies. Although she’s much better now, it was startling to see how much the stroke had weakened her—similar to how one might have weakened from weeks in bed. My mother, who one month earlier had effortlessly walked the stairs, now opted for the ramps to access the hospital, and often had to stop to rest. Ideally, during the month that I had spent with her, she should have received speech and physical therapy. Instead, beginning the day after she was discharged, she was with me visiting Dad at the hospital. The good news was, not only could she now spell “world” backwards, she was told that she could drive again.

It was Friday, June 12, and doctor-change-out day at the hospital. From the get-go, it seemed like a really good day. One of our favorite nurses (Daytime Natalie) was Dad’s nurse and provided me with great morning vitals. Dad’s WBC count was down to 10,200 and Dr. Koshy, the ID, doctor said that he was doing well. This doctor was memorable because she always placed a glove over the cold stethoscope before she placed it on Dad’s chest. The good news kept coming when Dr. Sanchez said that Dad’s respirator was adjusted so that he was now breathing room air. He also said that he would have Dad’s arterial line (A-line) removed later in the day. Central lines and A-lines were highways to infection, so having them removed was a blessing. The only negative news of the day came from Dr. George, the nephrologist, who said that Dad still needed to produce more liquid gold.

veggiesMom and Chris stayed home after lunch and tended to my parents’ vegetable garden, which seemed to be exploding with tomatoes and cucumbers. During the early afternoon, Dad had his CT scan, which showed that his right chest cavity still held excess fluid. The doctor said that he might need another chest tube to clear it. Later that afternoon, Dad and I watched “Jeopardy,” which was one of the few normal activities that we had shared in a long time. Today we were fortunate to have two separate visits from pastors Tom and Don. Dad always seemed to brighten up after visiting with them. As if to underscore the good feelings of the day, Michelle, another of our favorite nurses, stopped in for just a moment to tell Dad how good he looked. When we returned to see him after dinner, Dad was back on CPAP. His oxygen levels had dropped some and he would receive full oxygen support during the night.

After such a good day on Friday, we felt optimistic that the trend would continue through the weekend. When we arrived at 8:15 A.M. on Saturday, June 13, Dad was still sleeping, was off CPAP, and was breathing on his own. His WBC count had ticked up slightly to 10,700, but Amanda, his nurse, wasn’t concerned. Dad’s hemoglobin level was also down almost a full point from the previous day, which meant that he needed another unit of blood. Amanda told me that Dad’s blood pressure had dropped overnight below a mean arterial pressure (MAP) of 65 and he required meds to raise it back to normal levels. I liked learning about MAP because I’d never been great at knowing when you had a good blood pressure reading. I knew some of the obvious readings, but Dad’s blood pressure was all over the place. The monitors alarmed only when the MAP dipped below 65. Understanding how to calculate the MAP would become important a few months later.

As Dad’s condition improved, the doctors started appearing later in the day. It’s an interesting situation—too sick to leave ICU, but not sick enough to be there. Mom and I had been a bit concerned about Dad’s congestion, his inability to stay awake, and the hemoglobin levels. When Dr. Sanchez arrived shortly before 1:00 P.M., he spent quite a bit of time suctioning Dad. He couldn’t explain the dropping hemoglobin levels and attributed it to Dad’s poor kidney function.

When Mom, Chris, and I returned after our very late lunch, we were pleased to see that Daytime Natalie had taken over for Amanda as Dad’s nurse. She informed us that Dr. Sanchez had requested an ABG test, and Dad’s blood gases were fine and were not responsible for his inability to stay awake. Dr. Sanchez was adamant about Dad getting out of bed and into the chair. With the help of a couple of other nurses, Natalie finally got Dad into the chair shortly after 5:00 P.M. From the moment he sat down, he was fussing to get back into bed. When we returned at 6:30 P.M., Natalie said that when they came back to move Dad back to bed, they could barely keep up with him; it was the most energy they’d seen from him all day. I guess we’re each energized by something, even if it’s the idea of going back to bed.

Can we score four good days?

June 3, 2015. We arrived at the hospital around 8:45 A.M., slightly later than our normal arrival time.  I queried the nurse about Dad’s morning labs and learned that his white blood cell (WBC) count was up slightly to 12,600. I was told to not worry, but I had been keeping track of good days versus bad days, and it seemed like we couldn’t maintain forward progress. Bad days were generally preceded by an increase in his WBC count. I logged this information, kept my thoughts to myself, and gave Dad a big smile. According to his nurse, he had had a pretty good night, but when questioned by the doctor, was not able to remember that the year was 2015.

PINEAP01Dad was awake, alert, and was glad to see us. He had required BiPAP support while he slept, but they had stopped his medication for hypotension. It seemed like we were on track to have the Modified Barium Swallow Study (MBSS) later in the morning. He had received permission to have ice and thickened juices, and he was ready for both. Holly, his speech therapist, had provided me with thickener, so I prepared some thickened apple juice for him. He drank it, but told me that he’d rather have pineapple juice. The hospital didn’t keep it onhand, so Mom and I promised to bring some from home.

At 11:00 A.M, Dad was taken to Radiology for his MBSS. Transferring him from his bed to a stretcher was a major production. A wound vac was connected to his chest and two receptacles were attached to his chest tubes. He also sported a central line for his IV medications and he still had the arterial line in his right arm.

As I mentioned in an earlier post, I really liked Scott & White’s patient record system. Shortly after Dad returned to his room, Holly stopped by and showed me the videos of Dad’s MBSS. This video was one of the coolest things I’d ever seen. Your body is doing some pretty complex stuff when you swallow. I’m astonished that we don’t choke on a regular basis. His test results showed that he was still silently aspirating thin liquids, like water. However, he had no trouble swallowing pudding or thickened liquids. He couldn’t, however, eat enough pudding to sustain his nutritional requirements, so the feeding tube had to remain.

He hadn’t been out of bed since his return to ICU 10 days earlier. The physical therapist stopped by to help him move from the bed to the chair and mentioned that his strength and balance had decreased significantly. As he did with most hospital personnel who entered the room, he told her that he was anxious to get moving again and that he wanted pineapple juice.

Dialysis started late in the day and continued for six hours and didn’t end until after Mom and I went home for dinner. Dad’s day seemed to go better than I had originally thought it would. Mom and I advanced the good day counter to 2. We were now hoping for three in a row.

tPA_structure
Structure of the PLAT protein

When we returned to the hospital on Thursday, June 4, Dad was already sitting in a chair; he had been there since 5:30 A.M. We arrived early enough to meet with Lyndee, Dr. Sai’s PA, Dr. White, and the nephrologist. Lyndee told us that Dad’s WBC count was 10,000, which is practically normal. She also told us that they would remove his arterial line today. Lyndee also mentioned that Dad’s right chest tube had stopped draining. She explained that to break up the clot, she would insert a tissue Plasminogen Activator (tPA) into his right tube. She also mentioned that tPA is also used to dissolve the clots in stroke victims. She was fairly certain that the left drain had done its job and they could remove it tomorrow. Having the tPA meant that he could not be dialyzed and could not have speech therapy.

Lyndee quickly explained the tPA procedure to Dad. When she was finished, I asked him if he understood what she said, and he shook his head. I proceeded to explain the process to him, using single syllable words. When I was finished, Lyndee said, “That was great. We should have you explain this to all our patients.” I really liked Lyndee, but I felt like telling her that explaining procedures to patients in a way that they could understand was her job.

While Mom and I ran errands and had lunch, Lyndee inserted the tPA in Dad’s right drain.  He had to be kept prone for a few hours and the nurses rotated him every 15 minutes. He was very sleepy and slept through most of it.

At 3:30 P.M., Lyndee removed the clamp on Dad’s right chest drain, which released 250ml of fluid in less than 5 minutes. We were cautiously optimistic that only infected fluid was being released, and not blood or other vital fluids. Shortly thereafter, Fred, his day nurse, removed his arterial line from his right hand.

Mom and I stopped by after dinner in time to see a lab tech enter Dad’s room to draw blood for a hemoglobin test. The chest tube receptacle showed that more than 750ml of fluid had been released since the tPA was finished, which was more than twice what had drained from his right chest cavity. I couldn’t decide whether to be pleased or nervous, so I decided to err on the side of pleased.

Before leaving, I prepared some pudding for Dad and got him some ice. It seemed that we had had another good day—the third one in a row. Advance the good day counter to 3.