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.