Decisions

 I am not a morning person. I never have been. People told me when I had kids that would change. It didn't. They are night owls too, not early birds.

I do wake up early if I need to or if there is a lot going on, and my days in West Virginia fit that description. I was constrained by the hospital's visiting hours as to when I could arrive, but the morning of June 7 I called the nurse's station at 6. I wanted to know how my mom's night was and if they had yet set a time for the meeting with the Support Team. One of Mom's favorite nurses was on duty and said she had  a restless night; the Support Team would be called once we arrived and come to the SICU for the meeting.

We were all on pins and needles. We didn't know what to expect. My brother and I thankfully were able to get through the visitors' line and to the room shortly after 8. We reassured our mom that she was heard and the process was moving forward. On rounds the doctor in charge for the week talked as if meds and treatments would continue as they had been. I know the doctors are busy and have many patients, but was there no communication about all that happened after rounds the day before? My mom had to tell her that we were meeting with the Support Team. Confusion. Lack of communication. And we didn't know the extent of it yet.

The waiting was hard. My brother and I were tired and anxious, yet we remained calm and supportive for Mom. My sister wouldn't arrive until late that night; she was already in transit for her 22-hour trip. She knew what was planned for the day but she wouldn't get an update until she arrived in WV.  

Two hours after we arrived at the hospital the Support Team came to the room to talk with my mom. While my brother and I were waiting in a quiet corner outside the room, his phone rang. It was the orthopedic surgeon calling to discuss the details of the surgery scheduled for the next day to deal with the infection in Mom's hip. He was on speaker phone and in unison my brother and I said, "No. The Support Team is meeting with her now. There will be no more surgeries." I was incredulous. 

There apparently was no communication among the specialists who were taking care of my mom. I thought the hospital doctors were there to keep this confusion to a minimum. What do patients do that have no one there to speak for them? How do patients who are in dire circumstances get the care they need if they can't coordinate the information coming at them? We wouldn't have even known about the Support Team if Cass hadn't mentioned it.

Minutes later Dr. Navia emerged from the room to address my brother and me. I am using his name because he was the answer to my prayers, the doctor who put all the information together and the first doctor to tell my mom, my brother, and me the whole truth. He said, "Ellie is very sick. She is dying." We said we knew that. He said, "No, I mean she is dying now. Her white blood cell count is very high and there is nothing that will change that." We were speechless. Had he just told our mom? Yes, she knew. Did she know her options? Yes, she wants to go forward with comfort measures only.

I have thought of that conversation often over the last year. Was there anything I could have asked to get to the whole truth? What could I have done differently to save my mom from the days of pain and fear? I don't know what my mom would have decided if she had known all the facts the entire time. She wasn't given the chance to make those decisions. She didn't realize she could say, "What are you doing and why and are there alternatives?" She was put on a ventilator with the hope that her lungs would heal; she took heart meds and antibiotics and pain meds; the doctors treated her lungs, her heart, and her broken bone with a focus on their specialty. No one had put all the pieces together to treat the entire person...

until Dr. Navia. Now there would be a time of transition. The timeframe was unclear and how long she would stay in the SICU wasn't certain. We all trusted that Dr. Navia would sort things out because this was his specialty. My brother and I were now armed with all the information and we would be there every step of the way.

I asked at the nurse's station about visiting after hours when my sister arrived. That decision was up the charge nurse, so I would have to call later that night to find out. It worked out that the same wonderful nurse was on duty that night and when I called she spoke directly to the charge nurse. We had permission to visit when my sister arrived.

While I was waiting for my sister at the bus stop, my phone rang just as the bus was pulling in. It was my brother and his partner. They had gotten the messages. He had been working on his car to get it running, and they were coming Wednesday. 

That late-night visit at the hospital was surreal. It was the three of us chatting and grinning because we were together. Mom had had a few sips of water and some applesauce. The SICU was quiet. The nurse brought in cups and a pitcher of water for us, which tasted as good as any wine. 

There were moments of grace in those difficult days. There were people who helped my mom and my family. I think often of those conversations, too. 

We didn't know what the next days would hold. We did know that we would face it together.