August 4, 2009
“I don't have the words for an update today. Jonah has had a horrible night and the doctor's are exhausting every avenue to get him back on track. I know that these things are not for us to understand but it doesn't make it any less painful.”
Today, my life came to a halt. As I walked to Jonah’s room on this morning around 6 AM, Dr. Bhutta was standing outside Jonah’s room. He was leaning against the windows, looking intently at my son, and he sighed. His eyes met mine and I knew something was terribly wrong. He rubbed his face and let his head hang low. “I don’t think we can fix him.” The words pierced my heart. “We need Jason here.” I begged for an answer. Why? Why now? He said, quietly, “It’s his lungs now.” He bit his lip and shook his head. “His kidney’s aren’t working, Wendy. Now, his lungs aren’t getting enough blood flow. He’s struggling.”
I rushed back to my room and called Jason and told him to get here as soon as possible. We had to meet with Jonah’s team around 10 and make some decisions.
We sat in the tiny office in the CVICU, surrounded by Jonah’s team of nurses and Dr. Dyamenahalli. Hilary, our social worker, was there to lend a hand, too. Dr. Dyamenahalli made clear in no uncertain terms that it was all up to Jonah at this point. They had exhausted all resources and they could not fix him. We were given the opportunity to revoke the DNR order and to place him back on life support, if it became vital. Otherwise, they would just keep him comfortable, watch for any signs he could be sending us and prepare ourselves.
I called all the family to come in. It was a agonizing waiting game. Horrible. Jonah did not decline that day but he didn’t improve either. He didn’t require support and we didn’t revoke his DNR. But as nighttime approaches, vitals usually decline. My family sat up all night in the waiting room, watching as I tried to get a few hours of sleep. They were prepared to be there for us, to hold us up at any moment. It was after midnight before I finally fell asleep…and when I woke the next morning, Jonah was still with us.
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