On April 7th, Archer was requested to check back into the hospital due to high ammonia levels. When we got there, we were brought up to the ICU, which we had not been in previously. I remember just walking into the room, and I started to cry. There were so many monitors, screens, tubes, and wires when you walked into the room. It felt overwhelming like the “writing was on the wall” regarding Archer’s future.

Shortly after getting to the ICU, we had many doctors come in. They first talked to us to see if we had any wishes regarding a DNR or DNI for Archer. With children, you get many more options than just a ‘yes’ or ‘no.’ This was more “writing on the wall”… (I will discuss this in another blog).

We expressed that we didn’t understand why we were required to be back at the hospital. At this point, we wanted to be home with Archer as much as possible and enjoy the little time we had left.

Palliative care came in and was able to help us express our wishes to the staff that we didn’t want to have Archer in the hospital for observation, especially if there was no cure for his illness.

After long conversations, the Palliative care team set up what is called a “Care Conference” for the next day. This was a time for us to meet with all of the doctors and staff on Archer’s case, roughly 15 doctors, fellows, social workers, and counselors.

All night and the following day before our Care Conference, Theo and I put together a list of our questions, gathered our thoughts, and got mentally and emotionally ready for the meeting.

We walked into a room of Archer’s team, and I felt a weight on my chest. I thought this was the scariest thing we had to do as parents while in the hospital. We sat and talked to the doctors to understand the issues Archer was having, what it would mean to either keep him at the hospital or take him home, what his life would look like, and our wishes.
I remember about an hour in, I choked back tears and said to these individuals, “Theo and I want to go home. We want to take Archer to the zoo”.

Deep down, we knew we didn’t have much time. We wanted to make more memories, not only as a family of three but with everyone. We told both of our families what was happening and were discharged on the evening of April 8th.

Looking back, I wouldn’t change my decision. Family was over all the time to get as much time with Archer as possible. And we took Archer to the zoo.