Uncategorized – Page 13 – Tale of Two Parents

Preparing for the next phase

Published on August 3, 2016 by mellowdee55Leave a comment

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.

YankerFamily When 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.

During 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.

pmSpeakingValve As 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.

Tuesday, 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.

When 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

Published on July 28, 2016August 2, 2016 by mellowdee551 Comment

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.

keys That 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.

veggies Mom 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.

The letter board

Published on July 20, 2016 by mellowdee552 Comments

It was Sunday, June 7, 2015. After the events of the preceding couple of days, we were eager for some good news. Mom and I stopped by the hospital on the way to church and were pleased to learn that Michelle, one of our favorite nurses, was assigned to Dad. We were relieved to learn that he had had an uneventful night, which was always our goal for him. Although this day seemed to be starting well, the intubation yesterday had halted all of Dad’s forward progress with his swallow therapy. Following extubation, he’d be NPO again and he’d have start back at square one with bedside swallow evaluations.

During Dr. Velazco’s morning rounds, he told us that they planned to remove the final chest tube today. He also announced that they would perform a tracheotomy on Monday. He wanted to know whether he should tell Dad or if we wanted to tell him about the procedure. I told him that I would break the news to my father on Monday. He responded to me by saying that they would postpone the procedure until Tuesday. He assumed that Dad would want a day’s notice and I had to convince the good doctor that a day’s notice would not be in my father’s best interest. I had to also instruct the day and night staff to avoid saying anything to my father.

While Mom and I attended church, Stan visited with Dad. Stan was always good company for Dad, but visits with patients on ventilators are awkward and uncomfortable—even for saints like Stan. While on the ventilator, the respiratory therapists perform breathing trials. During breathing trials, the oxygen concentration is reduced, with the goal being to get as close to 21% as possible for as long as possible. Today’s therapist informed us that Dad was doing well and was currently receiving a low level of oxygen.

Monday arrived, and I wasn’t looking forward to this trip to the hospital. Shortly after I arrived, Dr. Velazco entered the room. I gripped Dad’s hand and told him about the tracheotomy. Not surprisingly, he seemed a little nervous. I told him that I believed that having a tracheostomy was best for him, and it seemed like he believed me. Dad’s dialysis session was interrupted for about an hour, during which time Dr. Velazco and another doctor performed the tracheotomy.

Now that Dad has a tracheostomy, he can’t talk. He had made a letter board for his mother when she developed Guillain-Barré syndrome, and now Dad requested that we find it during our lunch break. After searching unsuccessfully for it, I decided to create one, and searched the internet for some ideas.

Tuesday, June 9 was my birthday. Stan was back in Houston, but Chris, my cousin was due to arrive later in the day. Because I had to attend an early staff meeting, Mom and I didn’t arrive at the hospital until 9:30 A.M. According to Michelle, Dad had already sat in a chair for two hours and had had his feeding tube replaced. His WBC count was down to 10,700, and the doctor had removed his right chest tube.

Dad was receiving lower levels of oxygen when we arrived in the morning, but was returned to full ventilation in the afternoon. The tracheostomy provided a benefit that we hadn’t anticipated. Before the tracheotomy, full ventilation required intubation. Following the tracheotomy, the difference between full ventilation, BiPAP, and CPAP involved changing the levels of oxygen going to the tracheostomy. That benefit alone seemed worth the price of admission, although I wasn’t the one who had a hole in my throat.

letterBoard Thanks to his wonderful nurse, Dad also had a procedure of a different type. Michelle, who keeps her beautician license up-to-date, gave Dad a nice shave. He hadn’t shaved since he entered the hospital on May 6, and the change was dramatic. He looked almost like his usual self.

All things considered, today seemed like a good day. My parents and I celebrated my birthday in the hospital, but after dinner their neighbors, LoSharris and Tom, came over to my parents’ house for cake and ice cream with me, Mom, and my cousin, Chris. It was also Tom’s birthday and it was nice to have a little party.

On June 10, we learned that Dad had had a pretty good night and was currently on CPAP. The plan was to keep him on lower levels of oxygen during the day and then provide him ventilator support during the night, which would give his lungs a rest. If his breathing kept improving at this rate, the trach nurse would fit him for a speaking valve.

The feeding tube was a constant challenge, and today it became clogged. Megan, Wednesday’s nurse, tried using Coke to clear it, but to no avail. Listening to the discussions about all the ways you can use Coke made me glad that I didn’t drink the stuff. After struggling to insert the replacement tube, an X-ray finally showed that the new tube was correctly positioned.

My cousin Chris and I had some interesting letter board conversations with my father, which prompted us to add a few more words to the board. Communicating with a letter board was exhausting, but together Chris and I could usually figure out what Dad wanted to say.

When we returned to the hospital after dinner, we met Drew, the night nurse. Something about him seemed very familiar. When he mentioned that my mother looked better than the last time he saw her, I realized that he was my mother’s nurse for her first night in the hospital. Because of her stroke, Mom had no memory of him. He was her nurse for only one night, and he usually worked in the south tower, which was why we hadn’t seen him since May 15. Before we left for the night, Drew had fixed Dad’s arterial line splint, adjusted his dialysis catheter lines, and adjusted the feeding tube, making it more difficult for Dad to pull out in his sleep. After watching him take care Dad, I was thankful that Drew had been Mom’s nurse that terrible night.

In spite of the tracheotomy, today seemed like another good day—the third good day.

Four good days in a row was beginning to seem like an impossible goal

Published on July 13, 2016 by mellowdee55Leave a comment

It’s June 5, 2015. Mom and I arrived at the hospital at 8:45 A.M. We’d had three good days and were hoping for the ever elusive fourth good day. Because it was Friday, we were greeted with a new set of doctors. Dr. Velazco returned as the pulmonologist and Dr. Issac was the nephrologist. We hadn’t been in the room long when I started feeling a little anxious about our four good days. In addition to Dad’s WBC count being up by 3000 points from the previous day, he sounded somewhat congested. He coughed throughout the day, but seemed unable to expel any of the secretions from his lungs.

The dreaded dialysis machine returned and removed approximately 2400ml of fluid during the eight-hour session. We had been told that the dialysis was a temporary procedure so that his kidneys could “rest,” but we wondered how much rest they needed. Holly tried to see Dad for swallow therapy, but he was asleep and could not be roused.

The respiratory therapist gave Dad a breathing treatment, which seemed to provide him with some small amount of relief. When Mom and I left at 4:00 P.M., Dad was still sleeping.

Stan’s late arrival into town caused us to run behind schedule, so we didn’t return to the hospital until 7:30 P.M., well after the shift change. His night nurse, Carolina, entered his room—her first time seeing him that evening.

Dad appeared weak and it seemed to me that he was struggling to breathe. Carolina spent a considerable amount of time suctioning him and getting him cleaned up for the night. He seemed a lot better when we left, but this didn’t really feel like a good day.

My good-day counter remained at 3.

respirator Because it was Saturday, I slept in until 6:45 A.M. I usually slept with my phone on the nightstand, but I had inadvertently left it in the family room the previous night. I retrieved the phone and noticed that I had missed a call from Scott & White at 5:14 A.M. In a panic, I called the hospital and Kelli, the charge nurse answered. She told me that at 3:00 A.M., they had had to intubate my father. Evidently, he went into hypercapneic respiratory failure. Fortunately it was an emergency situation, so they didn’t need to obtain consent from someone separated from her phone. They also reinserted an arterial line in his right arm. In addition to all this good news, his WBC count had elevated to 15,000, which meant that yesterday’s elevation really was the beginning of the end of our good-day stretch.

When we met with Dr. Velazco that morning, he said that he would perform a bronchoscopy so that he could see what was happening in Dad’s lungs. They would also collect secretion samples. Knowing more about the infection in his lungs would help them target the infection with the correct antibiotics.

Mom and I left the hospital during the bronchoscopy. Because Dad was fully ventilated, the process was somewhat simpler, with the possibility of fewer complications. The rains that had started a couple of weeks earlier had finally stopped, and the daily temperatures were beginning to rise. When we stopped by the house, Stan was braving the heat to mow the lawn.

When we returned to the hospital after lunch, Dr. Velazco told us that he had removed a lot of “chunky” secretions from Dad’s lungs. Dr. Velazco was from Peru, was soft spoken and spoke with an accent that my parents couldn’t understand, but I really liked him. He took time to explain my father’s situation and often skipped the $20 technical terms for the easy-to-understand 5-cent words. The removal of this “chunky” matter improved Dad’s oxygen saturation levels, which zoomed from the worrisome 80s to 100%.

Somewhere around 2:00 P.M., I received a text message from a phone number that I didn’t recognize. The message said that there was a birthday hug waiting for me in the ICU waiting room. The mystery texter turned out to be my long-time friend, Susie. She had been in Dallas (a three-hour drive from Temple), and thought that she’d stop by to say hello.

friends Susie’s appearance in the waiting room was just one example of the random acts of kindness that my mother and I received during my father’s ordeal. I still marvel at our good fortune to have been blessed with such wonderful selfless friends. The neighbors seemed to instinctively know when we needed a meal, some cookies, or a hug. My friend Rhoda gave up a week of her time in Wisconsin to help when Mom had her stoke, and in three days, my cousin Chris would be arriving from Phoenix to help out for a week.

Although I loved their support, I never stopped hoping that I wouldn’t need it much longer.

Today was Dad’s one-month anniversary in the hospital, and the good-day counter had been reset to 0.

Can we score four good days?

Published on July 6, 2016 by mellowdee55Leave a comment

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.

PINEAP01 Dad 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.

Bad day, good day whiplash

Published on June 30, 2016 by mellowdee551 Comment

June 1, 2015. There was something depressing about starting a new month in the hospital. I had to attend a business meeting that morning, so Mom and I didn’t arrive at the hospital until 9:15 A.M. Once again, Dad was hooked up to the dialysis machine. The alarms on the dialysis machine and on Dad’s blood pressure monitor chimed incessantly. The alarms on the dialysis machine sounded like Roger Rabbit sound effects, and they unnerved. Before he entered the hospital three weeks earlier, my father took medication to control his high blood pressure (hypertension). He now struggled with low blood pressure (hypotension), especially during dialysis (Removing fluid from the blood lowers blood pressure.). Before starting a dialysis session, the nephrologist or nurse determines the amount of fluid to remove. During the previous couple of sessions they had removed approximately 3 liters of fluid, roughly 3 kilograms of weight. During the dialysis session this day, the dialysis nurse continually reduced the target amount in an attempt to stabilize Dad’s blood pressure. Dr. White finally decided to stop fluid removal and simply clean the blood. After four hours of struggling to control Dad’s hypotension, the doctor suspended dialysis for the day.

Because Dad was so lethargic and nonresponsive, the doctor was concerned about his oxygen saturation. To check the oxygen levels in Dad’s blood, Dr. White ordered an arterial blood gas (ABG) test. Because I inherited Dad’s rolling and difficult-to-stick veins, I cringed whenever they had to draw blood from him. To find a vein for a blood draw, they sometimes had to use ultrasound. I had heard that ABG sticks were painful, and was relieved that he slept through this blood draw.

Dr. White stopped by again and said that he was concerned about Dad’s mentation and that he wanted to more closely monitor his blood gases. To do so, he wanted to insert an arterial catheter in his right forearm. This didn’t seem like something I wanted to watch and was relieved when I was told that a sterile environment was necessary for the procedure. I felt guilty about it, but was glad to leave the room with Mom. Fortunately, Dad’s blood pressure was so low that he slept through this procedure too. The arterial catheter also provided us with real-time (second-by-second) updates of his blood pressure. Although always knowing his blood pressure was helpful, it was also nerve wracking. I was starting to live by the monitors and their constant beeps and bells.

Following the insertion of the arterial catheter, the doctor attempted to improve Dad’s oxygen levels by starting him on BiPAP, which made him look like a drowsy fighter pilot. The doctor told me that if the BiPAP didn’t improve his oxygen saturation, they’d have to intubate him. Right about that time, Holly, the speech therapist, stopped by to see if Dad was ready for the Modified Barium Swallow Study (MBSS). There would be no swallow study today, and tomorrow wasn’t looking very promising, either.

Later that day, Pastor Janette from the church stopped by for a long visit. We’d just seen her a day earlier, but it was good to see her again. The pastors at my parents’ church seemed to instinctively know when we needed them. Jack, one of the parishioners, also stopped by for a visit. My parents had just recently joined this church and I was impressed by the care and attentiveness of its members, not to mention impressed by and grateful for their prayers.

Shortly before we left for dinner, Dr. White stopped by and told us that he would be intubating Dad. Moments later, as if he had heard, Dad woke up. He was responsive and responded to commands, so Dr. White rescinded the order. As much as we didn’t like the BiPAP mask, we preferred it over the intubation alternative.

Mom and I ran home for a quick dinner and then came back to the hospital. Dad was slightly responsive when we returned, but not much.

Contrary to Dr. White’s plans the previous day, Dad was not transferred out of ICU. Today was definitely a bad day. We reset my “good day” counter back to zero.

Tuesday, June 2. Not knowing what to expect, my mother and I nervously headed to the hospital. The day seemed to start out well. Not only did we score a good parking space, which was a major feat, Dad was sitting up in bed without his BiPAP mask. My excitement diminished somewhat when I learned that he was the one who removed it. Although he was a little pale, Dad looked and sounded much better than yesterday. I was alarmed when Kristin, his nurse, told me that during the night he had tried to pull out his central line and his arterial catheter. I took it upon myself to have a little talk with Dad about why pulling out lines was a bad idea. We were pleased to learn that the nephrologist had decided that Dad didn’t need to be dialyzed that day. His blood pressure was good and his white blood cell count was inching downward and was around 12,000, a vast improvement from two weeks earlier.

Holly, the speech therapist, stopped by and administered another bedside swallow test. Based on the results of this test, she allowed Dad to drink some thickened juice in the afternoon. She also scheduled his MBSS in Radiology for the following morning. The kidney team dropped by that morning and said that dialysis might start back up the next afternoon–after the MBSS.

Dr. Sai, Dad’s heart surgeon, stopped by just before Mom and I left for lunch and said that Dad was improving, but that “we needed to get a handle on his breathing.” He spoke of breathing treatment alternatives, like a tracheostomy (or something similar), but that wasn’t an option that we wanted to contemplate.

Dad was taken to Interventional Radiology (IR) around 2:15 P.M. to have tubes inserted in his chest that would drain the infected fluid that had accumulated between his lungs and chest cavity. He was supposed to have this procedure on Monday, but was suffering too much from hypotension. He returned to the room around 3:30 P.M. pretty sedated and he slept for quite a while. Pastor Tom, the senior pastor from the church, dropped by shortly after Dad had returned from IR. Dad slept during most of Tom’s visit, but woke up while Tom was there and was able to talk with the pastor briefly before he left.

When Mom and I returned after dinner, Dad and I had a surreal conversation about the BiPAP mask he needed to wear overnight. It became so ridiculous that Shawna, the night nurse couldn’t stifle her laughter. Too bad that we didn’t record our 10-minute exchange. Mom and I returned home around 8:30 P.M.

This was a good day, and after yesterday we needed one. I reset the “good day” counter to 1.

Help! I’ve been robbed!

Published on June 21, 2016 by mellowdee551 Comment

One of the things that I like about the Baylor Scott & White Health system is their use of Epic, an electronic medical record-keeping system for mid-size and large medical groups. Every time a doctor, nurse, therapist, dietitian, or any medical professional enters the patient’s room, that person logs on to the computer and updates the patient’s records. Epic also has a patient portal, which means that patients can contact their doctors, view test results, schedule appointments, and more.

roomTerminal Every morning after I arrived at the hospital during Dad’s stay, my father’s nurses logged on to Epic and provided me with the results from 4:00 A.M. labs and updated me with information about his night. Using my trusty iPad, I kept detailed notes about everything that I witnessed and overheard and about conversations with my parents and friends. I also kept track of comings and goings of visitors and hospital personnel. I also kept track of the weather and some current events. When the entourage of doctors, pharmacists, residents and fellows, and the so-called patient advocate stopped by, I logged the information they presented, as well as comments that they made among themselves outside my father’s room.

When my father eventually left the Baylor Scott & White hospital system, my mother and I wanted to obtain his medical records. Some disturbing events had happened near the end of his stay and we wanted to see what had been charted so that we could reconcile that information with what we had been told. Also, I had heard comments from therapists and nurses that didn’t always jive with what we had heard from doctors, and we wanted to know the truth.

During our second trip to the Release of Information office, we were finally able to request Dad’s records. I learned that I needed all of my Medical Power of Attorney documentation when requesting records, which was interesting because I needed only my word when authorizing surgery and tests. I can appreciate the difference, however. The release form contained several check boxes that enabled me to choose the type of information that I wanted included in the report. I could also choose whether I wanted a printout or a PDF on CD. The form indicated that there would be a fee.

reasonableFees — Maybe I should blame the State of Texas?

According to the “Patient Rights & Responsibilities” document that was included in his welcome package, he or his medical advocate had a right to “obtain a copy of his/her medical records at a reasonable fee and within a reasonable time frame after submitting a written request to the hospital.” I assumed that a PDF on a CD would be the simplest and least expensive option, plus it would be searchable and I could add notes as comments. I was still living at my parents’ home at the time, so I had the CD mailed to their address.

Several days later I received the CD in the mail. Enclosed with the CD was an invoice for (wait for it…) $732.46. The hospital contracts with ScanSTAT Technologies, who charges $0.22/page to push a couple of buttons, write a report to CD, put the media in an envelope, and mail it. Our report was in excess of 3300 pages.

I’ve had a little experience with scanning companies and their charges. One of my best friends owned a scanning company in the 1980s-90s. Back in the last millennium when you used an expensive system like a Kurzweil scanner, someone had to monitor the scanner, feed in paper reports (although you might be able to use a sheet feeder), and then the scanner program wrote the scanned pages to disk or tape. Now that we’re well in the 21^st century, technology has changed significantly. Unless Epic is a totally bogus system, and I’m pretty sure that it isn’t, it should be able to output a report based on selected criteria. Based on the “Generated on 10/26/2015 9:14 AM” footer on every page, I strongly suspect that’s what happened.

While I understand that Baylor Scott & White and ScanSTAT Technologies are not charitable organizations, I think that this invoice is far from what I would consider reasonable is closer to shocking and unacceptable. I used to own a business, and I understand overhead costs involved to run and sustain a business. While most businesses must find the pricing sweet spot so that they can make a profit and remain competitive, patients have no choice when it comes to acquiring medical records.

I happened to be back in Houston this week and had the opportunity to visit with my personal physician. When I told her about the price of the CD, it took her a moment to close her mouth. My husband is from Michigan and by state law, hospitals and their contractors can no longer charge more than $35 for medical records. Heck, I wouldn’t have balked at $50, but $732.46 bordered on the obscene.

On occasion, I make comments in my posts to the effect that I didn’t know something at the time that I now know. In all cases, this new-found knowledge was derived from these medical records. It’s been an interesting and sometimes shocking exercise to compare my notes with the notes in these files. I intend to keep sharing many types of interesting information.

Have we been here forever yet?

Published on June 14, 2016 by mellowdee55Leave a comment

It was May 29, 2015–Dad’s 5^th day back in the ICU and his 18^th day in the hospital. The other day they simply removed excess fluid; today, with the return of the dialysis machine they also cleaned the blood. What they didn’t tell us on either day was that his creatinine levels were about 4x above normal, which would have been disturbing to know.

Before Dad’s admission to the hospital, I never paid attention to creatinine levels in my Complete Blood Count (CBC) results for my own blood tests, but the creatinine and blood urea nitrogen (BUN) levels turn out to be pretty important markers for the kidneys. When the kidneys are working, they eliminate fluid and also clean the blood. When they aren’t working, fluid can accumulate around your heart and in your extremities, and creatinine accumulates in your blood. Sometimes the kidneys perform one function well but fail on the other. They need to perform both functions well to avoid dialysis. According to Dad’s chart, his system was also acidosis, a condition that can occur when your kidneys and lungs can’t keep your body’s pH in balance. Respiratory acidosis occurs when too much CO2 builds up in the body. Dad was so lucky; he was seen by both the nephrologists the pulmonologists. We were starting to see quite the parade of specialists.

Holly, another of the hospital’s speech pathologists, administered another bedside swallow test. Although he failed it again, Dad did show signs of improvement. For Holly to get an accurate assessment of his swallowing, Dad needed a modified barium swallow study (MBSS). Along with everything else that was scheduled for Monday, June 1, we hoped that he could have that test, too. He was getting tired of chips and sips.

After dinner, I went back to the hospital to visit with Dad and meet with his night nurse. Nighttime was scary for me and my mother, especially as my father started drifting toward a delirious state. I couldn’t relax until I knew who the night nurse was and had had a chance to talk with him or her. Dad’s needs were pretty simple: he needed to go to sleep with his suction tube in his right hand, the call button in his left hand, and his feet covered.

Meanwhile, I felt like I was starting to fall behind at work. Even with getting up at 3:30 A.M. and working between trips to the hospital and on weekends, I had a difficult time working 40 hours. Once again this week I had to take another 8 hours of paid time off. My manager wasn’t complaining about my unorthodox working hours, but I was starting to feel like I was hiking through peanut butter.

May 30 was Saturday. Stan was in Temple and he spent a significant portion of the weekend mowing my parents’ acre lot. He also handled all of the chores that we were too tired to tackle during the week. Then while Stan visited with Dad, Mom and I acquired a prepaid mobile phone for my father. He had decided that he wanted to be able to call us, although I had serious doubts that he would. After entering all of the important phone numbers (like mine, Mom’s, and Stan’s), I showed him how to use it.

It was during this time that the Infectious Diseases residents and doctors started visiting Dad’s room. They all said the same thing; because of his pneumonia and multiple infections, he’d be on antibiotics for an extended period—maybe 6 to 8 weeks.

After dinner, Stan and I returned to the hospital to run through the evening drill with Dad and the night nurse. When I removed Dad’s hearing aids, I noticed that one was missing. We looked through his bedding, to no avail. Fortunately, on May 31, when Mom and I arrived at the hospital, the nurse told us that the night nurse had found the missing hearing aid.

Dad had received quite a few cards, which Mom had brought to the hospital to show him. In addition to the cards that he received from their long-time friends, he had been the Member of the Week at their church, which significantly increased the number of cards that he received.

Every morning the nurse or the doctor asked Dad a series of questions: What’s your name, when were you born, do you know where you are, why you are here, and so on. He hated the daily drill, and as one day drifted into another, it became more difficult for him to remember the details. During the previous day Dad had had me create a cheat sheet of sorts on the dry erase board in his room. His day nurse, Sara, discovered the note and erased the board.

This week’s doctor was Dr. White. I had met him a couple weeks earlier when my mother was in the hospital. He was also her doctor in the Medical Intensive Care Unit (MICU) during her brief stay. Although I sometimes kidded him about his name, he was no relation to one of the hospital’s founders. Dr. White told me that they would move Dad to a different room later in the day. Since the tornadoes earlier in the month, he had been in an interior room. The doctors thought that he was becoming disoriented and that having a window room might help him. The doctor also told me that Dad would be moving back to the fourth floor the next day. The doctors suspected that Dad had empyema of the chest. To address it, Dr. White said that they would insert a couple of catheters in his chest to drain the pus and other infected fluids. Evidently, the accumulation of fluid was too much for the antibiotics to handle. He also mentioned that at the end of his hospital stay, Dad would be transferred to a long-term facility that could handle his various needs– provide strength building, and dialysis if necessary. I guess that they had decided he was improving; his WBC count was down to 22,000—only twice what is normal.

Dad’s dialysis ended at 4:30 P.M., and he and Mom watched a golf tournament on the television. This might have been the first television show that he had watched since his hospital stay started 20 days ago.

Keeping with our good day, bad day cadence, Mom and I thought that today had been a good day.

Stormy Weather Ahead

Published on June 7, 2016 by mellowdee552 Comments

On May 26, 2015, we woke to the news that Houston had received more than 10 inches of rain overnight. Fortunately, Stan arrived back at our home in Houston before the rain started. It wasn’t a great homecoming, however. Our flea infestation drove him from our house to our garage apartment. The local flooding forced Stan to work from home the next day. Before starting work, he researched ways in which he could rid our home of fleas.

stormyWeather1 Meanwhile, back in Temple, the doctors told my father during their morning rounds to drink a lot of liquids during the day. We set a goal of 3000 ml, but his consumption fell far short of that goal. I had thought that I could get my father to consume some liquids if I offered him something he really liked. Unfortunately, I couldn’t get him to drink a strawberry milkshake, which was a favorite beverage of his.

Around midmorning while Dad slept, the nurses inserted a nasogastric (feeding) tube. My mother and I were constantly amazed at what he could sleep through. He once told us that when he was a teenager in southern California, he slept through the air raids in Los Angeles, but this was ridiculous. When my mother and I left his room for lunch, he pulled out his feeding tube during a nap. He then learned that being awake during the insertion of a feeding tube was rather unpleasant.

During the morning of May 27, I received a text message from a coworker, telling me that my employer was closing our Montreal office. I had developed close relationships to many of those coworkers, and news of their dismissal was startling. My manager contacted me shortly thereafter and told me that she was retiring and that a favorite coworker of mine would be my new manager. Under normal circumstances I might have been more upset about activities and actions at work, but my attention was diverted to my father’s situation.

Addison, a speech and language pathologist with the hospital stopped by and administered a bedside swallow test to Dad, which he failed. Failing the bedside swallow test means that he’s probably silently aspirating anything that he swallows. So instead of strawberry shakes and juices, he’s limited to chopped ice and water, also known as sips and chips. If you’re silently aspirating, small amounts of water are preferable to anything else. On this my first day of swallow education, I learned that your lungs can absorb the water, but anything else that you might aspirate contains bacteria, which can cause aspiration pneumonia. What’s confusing to me is that he passed his initial bedside swallow evaluation on May 20; so, what happened in seven days? Keeping to our typical cadence of alternating good and bad days, today seemed like a bad day.

When we arrived to the hospital on May 28, Dad was hooked up to a dialysis machine. Because he’s in ICU, they used a system that’s much gentler than what you’d find in a dialysis center. Instead of pulling off two liters of fluid in a four-hour session, they pulled off that amount during an eight-hour session. At this time, I didn’t think much about the dialysis. We were told that the dialysis was a temporary treatment that would give his kidneys a break while he recuperated. Had I known that his kidney function was in the toilet, so to speak, I would have been a lot more concerned. On this day he also had a minor procedure whereby they inserted a Vas Cath in his upper right chest. This catheter would be the vascular access that would be used to dialyze him.

Periodically, we had to leave his room for a few minutes while they performed a test or other procedure. During one of those periods when my mother and I were in the ICU waiting room, one of the hospital chaplains asked me if I could act as a witness. I agreed to help, but I hadn’t paid close attention to what she had requested. I quickly learned that she had asked me to witness the signing of an end-of-life directive. I was ushered into the room of a male patient, who actually appeared to be healthier than my father.

The directive terminated all treatment except for that which would keep him comfortable and allow him to die. Because he was unable to sign his name, his wife signed on his behalf. He verbally expressed his intent, and then the chaplain and I signed the document as witnesses. I placed my hand on his wife’s back and she seemed to sag under its weight. As I was leaving the man’s room, he asked me for my name, thanked me for helping him, and wished my father well. I was overcome with sadness for this man who was about to die and for the woman who loved him and who was about to become a widow.

My mother was at a doctor’s appointment when I returned to the waiting room and I kept my emotions in check for the remainder of the day.

Throughout the ordeal that started on May 6, I hadn’t cried. I believed that crying meant that I had given in to defeat and I was determined that we were going to be successful. However, the events of this day broke me, and they had nothing to do with my father.

However, when Stan arrived in Temple late that night, I told him about my day, and I totally lost it for this couple who I had known for less than 10 minutes.

My definition of a bad day was evolving

Published on June 1, 2016June 1, 2016 by mellowdee551 Comment

On Saturday, May 23, 2015, I arrived back in Temple from Houston around 5:30 P.M. I’d been gone for less than 48 hours, but it seemed much longer and I felt like I had been in another world. Upon my return I learned that Dad had received two units of blood. His hemoglobin levels had been dropping and the doctors didn’t know why. They suspected that he might be bleeding from the colon and they began prepping him for a colonoscopy and endoscopy for the following day—Sunday.

These procedures are performed in the clinic, which is adjacent to the hospital. During normal working hours getting to the clinic is an easy, albeit long, walk through a series of hallways and elevators. On Sunday, most of the hallways are closed and locked. Fortunately, the transportation personnel let us accompany my father through the back hallways of the hospital to the clinic. Unfortunately, when the procedures were over, we had to find our own way out. I was reminded of the movie, “The Poseidon Adventure.” Pastor Don stopped by the hospital and was able to locate us. He was with us when we received the happy news that the results of Dad’s test were negative.Dad’s temperature had been hovering between 94 and 95 degrees for several days. When he was returned to his room from the clinic, they wrapped him in a Bair Hugger to help raise his temperature. The hospital rooms are kept pretty cold and Mom, Stan, and I were wishing we could each have one. When we left the hospital for the day, we were tired, but felt optimistic that Dad would be coming home in a few days. He had now been in the hospital for 18 days, a good 8 days longer than he had expected. According to the nurses, he was also a bit agitated about being in the hospital and wanted to “get out of this place.”

Those hopes were dashed at 10:00 P.M. when I was awakened by a phone call from his PA, Rob. Rob told me that they thought that Dad needed closer monitoring because they have been unable to raise his temperature. He neglected to mention that he needed closer monitoring because they were also concerned about sepsis, but maybe he thought I knew. The phone call also woke Stan, who heard my side of the conversation. When I ended the call, I told him that I couldn’t see the point in waking my mother. She was still recovering from a stroke and this news would only ruin her much-needed sleep.

Monday, May 25, was Memorial Day, so Stan was still with me and my mother in Temple. Mom had had a good night’s sleep and I now had the unenviable task of telling her that Dad was back in ICU. We didn’t know it at the time, but a couple of days earlier, my father’s blood tests started showing rising levels of creatinine, indicating a slow decline in renal function. A nephrologist was called in for an initial consultation, and he encouraged Dad to drink more water. From this visit, we inferred that my father was in control of his fate (or his kidneys’ fate).

The weather was deteriorating and Stan wanted to leave Temple before the storms hit. When he left at 2:00 P.M., lightning constantly lit up the sky, and Mom and I spent about 20 minutes in their safe room during the tornado warnings. At the hospital, all of the patients with window rooms, which included Dad, were moved to interior rooms.

When Mom and I returned to the hospital after dinner, Dad was sitting in a chair, but seemed to be in a deep sleep. I tried for an hour to wake him and finally called in his nurse, “Nighttime Natalie.” When he was in CTICU, he had often been assigned one Natalie during the day and another Natalie during the night shift. In her sweet voice, Nighttime Natalie shook my father’s shoulder several times, saying, “Mr. Locke, honey; wake up.” She eventually called in the charge nurse—Ursula from Transylvania. Even Ursula’s booming voice could not rouse him. She finally called in all the male nurses and techs on the floor to lift him out of his chair and put him back to bed. One of the male nurses tried to wake him by pressing down and twisting on his chest scar. Fortunately, my father didn’t feel the pain.

The staff was very concerned that he had suffered a stroke, and they notified the on-call resident, who ordered a CT scan and an EEG. While waiting for the two technicians to arrive, Dad woke up and tried to talk to us, but he was unintelligible. Before we left the hospital for home we learned that the CT scan and EEG showed no sign of stroke or other brain damage.

When we left the hospital I told Mom that because every other day seemed to be bad, tomorrow had to be a better day.