In 2022, we were discharged from the hospital on April 1st and spent almost a whole week at home. We had to go in for regular blood drawls and dressing changes for his PICC line, but we were okay with that, knowing that we got to spend time with Archer at home.

On April 7th, we were told we had to be readmitted to the hospital. Based on one of Archer’s blood tests, they had noticed his ammonia levels were rising. We weren’t admitted into the hospital wing he had been in before, but we were in the ICU this time.

Walking in and seeing all of the monitors and chords was very scary. I had a meltdown, feeling like this was ‘it’ for him. Finally, we got a doctor to talk to us and explain why we were in the hospital. During this conversation, they told us they could do nothing for Archer. So I very bluntly asked why we were in the hospital. Everyone didn’t know.

Finally, Palliative Care came in. The doctor I really liked on this team was working this day. He helped us advocate getting Archer home, and he is the one who set up a Care Conference for the next day. (I have a whole blog on what the Care Conference was like, so feel free to check that out).

I remember the day we were back in the hospital; I told the doctors I would do anything to get Archer home. I would do that if that meant we were coming in for appointments or blood drawls every day. Then I kept saying I wanted to get Archer to the zoo again.

In the hospital, we couldn’t have more than two visitors, and they had to be the same two visitors. Therefore, only some were able to spend time with Archer. Theo and I decided that being home, for whatever time we had, would allow the family to be with him. They would get to make some additional memories with him.

I don’t regret our decision to take Archer home. I don’t regret taking him to the zoo twice before he passed. I don’t regret fighting for my child, who couldn’t fight for himself.

Thankfully, this was our last time being admitted to the hospital. However, it’s tough to remember that we only had one more week with our sweet, smiley boy.