A departure delayed

Monday, June 22, 2015. It was day 48 at Scott & White Memorial (Memorial). When Mom and I arrived, Dad’s WBC count was 18,600, a 7,200 point spike from the previous day. Dad’s hemoglobin had dropped below 7.0 to 6.6, which meant that he needed another unit of blood. These lab results were alarming. In the last few days, doctor visits had become less frequent and occurred later in the day. Suddenly, the doctor who had recently been so difficult to find was now a constant presence. To me and Mom, the staff had seemed frantic to get Dad to a level that would permit them to transfer him to the Scott & White Continuing Care Hospital (CCH). Although today was supposed to be transfer day, it was obvious to everyone that his worsening condition would delay his transfer.

IMG_0806Dr. Velazco decided that he would perform another bronchoscopy with bronchoalveolar lavage (bronch) on Dad’s right lung to see if he had developed another strain of pneumonia. While we were waiting for the procedure to begin, Barbara, one of the hospital chaplains, spoke with us outside the room. During the past 47 days at the hospital, we had become friends with her, and she could tell when we were tense. At this point, even the housekeeping personnel could sense our stress level.

Although the doctor said that Dad’s lung had appeared normal, he mentioned that he saw thick yellow secretions, which wasn’t surprising to me, given his increased WBC count. Unfortunately, the secretions that he removed required 24 hours to grow in the lab. While we waited for the results, they started Dad on a broad-spectrum antibiotic. I could have sworn that this was the same thing that we heard the last time they performed a bronch, which miffed me a little. Although I’m sure that there are valid reasons why you’d change antibiotics, something about their approach wasn’t working. I was also a little annoyed that when I questioned the staff about my father’s changing vitals a couple of days earlier, I was informed that unlike me, “they” look at the whole person and not just the numbers. I’m not a medical professional, but it seemed that his whole person wasn’t doing too well at the moment.

Because it was Monday, Dad was scheduled for a four-hour dialysis session in addition to the bronch procedure. After dialysis started, Mom and I went home for lunch, and I worked for another hour before heading back to the hospital. Later that afternoon, two hematologists stopped by Dad’s room and said that they would be working with Dad’s team of doctors.

The respiratory therapists had been administering a deep respiratory treatment that smelled like sulfur. Happily for everyone, those treatments ended today. Dad’s central line had become a little sluggish, and the nurse had to inject something like a tPA to clear it.

Before Mom and I left for the day, Dr. Sai, Dad’s heart surgeon, stopped by for one of his obligatory 30-second visits to say hello, and to assure us that they were looking into Dad’s WBC count situation. Because he was Dad’s admitting physician, he was overseeing Dad’s case, but he wasn’t adding much to our comfort level or the level of confidence in the doctors.

June 23. I had to stay at home to attend some meetings via phone, so Mom left for the hospital at 8:00 A.M. without me. Today was another tough day, but some of Dad’s vitals showed some signs of improvement. His WBC count had dropped to 12,900. It was still high, but considerably lower than yesterday. Unfortunately, his hemoglobin level was still low, and he needed another unit of blood. Daytime Natalie was back, which generally reduced our anxiety levels. There was nothing quite as wonderful as having a great nurse assigned to your loved one.

Dr. Velazco was adamant that Dad get out of bed and into the chair. He insisted that movement and exercise were important for Dad’s recovery. Dad was very lethargic and sleepy, and Holly, the speech therapist, was not able to rouse him for therapy. It killed me when he couldn’t receive speech therapy. He simply had to be able to swallow again without aspirating.

The doctor mentioned again that Dad’s worsening anemia was preventing him from transferring to the CCH. The hematologists attributed Dad’s anemia to bone marrow suppression due to his infection and the antibiotics (which he took because of the infection).

The physical therapist visited Dad and assessed his progress. They had missed several sessions because of various procedures and dialysis. Dad was still pretty weak and on BiPAP, so they worked through some bed exercises.

Robert, one of the PAs, stopped by and told me that Dad was moving to the CCH on Thursday—two days from now. I’d believe it when I saw it.

Natalie, Kelli the charge nurse, and a male nurse finally moved Dad to a chair at 4:30 P.M. Between his attachments and his weakened condition, moving him from the bed to the chair was somewhat of an ordeal. He wasn’t in the chair long before his oxygen saturation dropped into the 80s. The respiratory therapist suctioned him, but his levels did not return to the upper 90s until she removed Dad’s speaking valve.

IMG_0809I left at 4:45 P.M. and did not return that day. Instead, I weeded my parents’ garden and picked tomatoes and cucumbers. Before my parents planted their garden, my father had mixed cotton seed into the soil. The way the garden exploded with vegetables and melons made me suspect that he had also planted radioactive seeds.

Mom returned to the hospital after dinner to check on Dad and say good night. When she arrived, he was back in bed, but his trach tube was open and his neck was covered with secretions. It took her a while to track down a nurse who would clean him up and replace his speaking valve. He was placed back on BiPAP support overnight.

June 24. Mom arrived at 8:00 A.M. and found that Dad was still on BiPAP. He was very drowsy, but he could be roused. It was Wednesday, which meant that Dad required dialysis, but they ordered an eight-hour session instead of a four-hour session, although they didn’t tell us why. Dad’s WBC count had dipped to 11,100. It wasn’t where it had been just a few days earlier, but we were seeing a definite improvement in his condition.

Dad was bronched again this morning. According to what the doctor said, they wanted to look for, and possibly remove, more secretions from his lungs. I had lost track of how often they had performed this procedure. This time they inspected found thick yellow mucus in the bottom of both lobes.  Once again, we would wait at least 24 hours for the lab results. The lab results from two days ago showed that he had developed pseudomonas tracheobronchitis, which occurs in patients on ventilation.

Svenja, the Trach Goddess of Scott & White, returned to change out Dad’s trach tube.  The type of trach tube he had now would require weekly changeouts for as long as he required one. Dad’s hemoglobin level was holding tight at 7.0, which was the minimum level the doctors would allow before ordering another unit of blood.

The wound care team stopped by and said that the chest wound from Dad’s two surgeries was healing “beautifully.” They removed the wound vac, which meant that Dad had one fewer tube and hunk of hardware to drag around and take to the CCH.

Mike, the physical therapist stopped by and had Dad perform leg exercises in the bed. By the time that Holly from Speech Therapy stopped by, Dad was sleeping and she couldn’t rouse him. I hated that he missed another swallow therapy session with her. It probably would be Dad’s last chance to see her before his transfer.

Laura, the case manager stopped by and confirmed to Mom that tomorrow at 11:00 A.M. Dad would be discharged from Memorial and transferred to the CCH.

It had been a very busy, almost frantic day of procedures and therapies to ensure that Dad could leave Memorial tomorrow for the CCH. We left the hospital with our fingers crossed.

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.

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.