It is 6:30 pm our time. I was nearly in tears 30 minutes ago. I had been sitting in a hard chair in the fluroscopy room for 3 hours with Dustin while they do an upper GI study. I was soooooooooooo tired I could hardly hold my head up. In the 20-30 minutes between films I am certain I looked like a little old man in church with my head nodding while I fell asleep.
We come back up to his room to finish with a portable unit and the nurse informs me that they have a sitter for tonight. I GET TO GO HOME and sleep. I wouldn't consider this, but they have really been good with him, my favorite nurse is here, and we live VERY close by. He is sick enough and on enough morphine that combined with his chlozapine, he will sleep through the night. We don't have to be back here until 7 am.
I can back from an IEP meeting and getting my haircut and colored to a fabulous blanket covering Dustin. The Linus Project brought in a blanket for him to take home. What a cool thing! AND it is his favorite color and they didn't even know! Robert took pictures, but the camera is at home with him so I will have to post later.
Oh and by the way, the morning Xray showed that he now has pneumonia. Nice. He is close to blowing out a vein, so we have to have another IV put in, finish the GI study, meet with the surgeon to discuss finding then I am headed to MY OWN BED!
Seventeen years, seventeen stories.
10 hours ago