The letter board

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.

letterBoardThanks 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.

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