The Beginning of Goodbye - Headed Home Part 11 November 12 2015, 0 Comments
September 10, 2013 continued.
Justin and I walked back to Bryer's room. The feeling was the same as when we had left. Surreal.
He was still blowing raspberries because of the forceful mask.
We asked to speak with Dr. A (PICU attending) and Dr. M (Director of Infantile Spasms Clinic). They came to the room and we discussed what we thought was best for Bryer. They both were in agreement. Dr. M even said if it were his child, he'd make the same decision. That was validating to hear.
We didn't know what would happen when we took off the mask. Dr. M left and Dr. A stayed to discuss further details of what we MIGHT expect. He talked about death and the process usually being very difficult and warned us of the worst. He assured us they would take measures to keep him comfortable. That was his primary goal and ours too. He was leaving for the evening around 5pm, but said to please call him on his cell if we needed anything.
I so appreciated Dr. A.
The mask came off while he was in my arms and I think we all held our breath for the next several minutes. Minutes strewn into hours. I passed him to Justin. Justin passed him to Mom. Mom passed him to me. I passed him to Dad. We did this all night long in the rocking chair.
He was so loved on. He was so wanted.
Morning came. It was September 11, 2013. They asked if we wanted to be moved to a nice big palliative care room on the 12th floor. We thought about it for a minute, but declined. We'd have to meet a whole new set of people. That wasn't something we needed at the time. So, they offered to move us to a quieter and much bigger room on the other side of the unit at the end of the hall. They'd arrange to have an adult size bed put in there so we could lay with him. I liked the sound of that and appreciated the thoughtfulness.
We moved over smoothly and at this point it was only me, Justin and B. My mom went home to shower and come right back.
I was sitting with him rocking when I heard the curtain pull back. I looked up, and in walked Kim. Bryer and I's dear sweet Kim. She had come to say good-bye. I was so thankful to see her. I hadn't been communicating with anyone for the past several days, so she found us on her own and I am so glad she did. She stayed for a short while. We talked and cried. She combed his hair with her fingers. She kissed his forehead and left.
I remember looking out the window. The sky was so gray.