The first few days were the scariest, when his pain was the highest and he was refusing to eat or drink. I had a couple of those moments that parents of special needs kids never verbalize, because saying you're afraid that your child might die will make your child more likely to die. I'm no alarmist, so it was alarming to me that I was feeling alarmed. When we came through the first hurdle and he was still in great pain but started eating and interacting, we were so relieved.
We've had a battery of tests, and in the process have learned that he's doing pretty well, as far as his shunt and his blood and health in general. What we're working with now is some inflammation in his bowels and colon, which they're going to explore further in the coming days.
It's interesting, because this is not life-and-death holding my breath like our seizure hospitalizations, but because of his pain level and his age and awareness, I don't feel like I can leave his room. I go get food and I bring it up here, I sleep here. I know I'm living in survival mode, moving on auto-pilot, feeling very little emotion and a lot of energy. I miss my life, I miss our normal, but we're getting through.
Thank you for your prayers and meals and support, it means so much. Looking forward to a day soon when we can decorate the tree and be together, all of us, in one noisy unorganized beautiful place.