Seth was really not doing fantastic during this time. His hemglobin dropped and one Tuesday he needed a transfusion. We really weren't sure if he was relapsing also. The stress of everything was overwhelming. On this morning I left PICU and Joel to get coffee and ran into Will and Nathaniel in the hallway in the hospital on the way to clinic. Seth knew I was close, so he screamed until I came to clinic to be with him. Then Will and I had a long talk with the doctors about why Seth's counts were dropping. When Joel was upstairs in ICU.
Then on a Tuesday after clinic, we met individually with Kyle and Dr. Gramatges to discuss taking Joel off the ventilator. It had to be done the next day. We had to call our family to fly in and say good-bye. Will and I spent the last night up at the hospital together. My parents brought Nathaniel, Seth and Becky up to the hospital the morning of Nov. 1. The child life specialist met with Nathaniel and Seth in a conference room to talk about what was going to happen. Since everything happened quickly, we didn't want to tell Nathaniel over the phone. We had to expalin that morning what would take place when we took Joel off the ventilator. That Joel would never come home.
Nathaniel was so sweet as we laid in bed with Joel after the ventilator removed. He stroked Joel, cried, and hugged Joel. Will and I took turns holding Joel. Marial and Zane played some music. Kyle came up to the hospital on his day off to help us get Joel moved upstairs to the 10th floor and everything set up. Seth refused to enter the room, but that was okay. Regina (child life specialist from 8th floor) helped Seth play in an area on the 10th floor.
I wanted to hold onto Joel's body forever. But Seth was done. I drove Seth home in the truck and he fell asleep. When we got home Seth and I took a bubble bath together. My friend Rheagan flew in from Ireland.
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