October 9, 2020
'My ears are open, the rest of me is dead'. How can I not cry?!? He mumbled this to me when I was quite concerned. He had finished vomiting again and seemed comatose. Who knows how many times the poor boy threw up today. It is amazing he ingested anything.
Then early this morning there were the tears. So many tears and so many times he cried 'i can't take it anymore. I can't do it. It's just pain, pain, and pain!'
He slept until 2 in the morning. Then the discomfort started and then the pain. In his bladder. They took his urine off for testing and there was blood in it.
Eventually, he fell asleep again around 730. And I realized that we wouldn't be going home today.
He didn't have much energy. No surprise! The pain had gone away and his urine looked normal. He even had a blood transfusion as his red blood cell count was too low. But he was anything but normal. Hardly moved all day. Hardly kept anything down all day. He went for an ultrasound in the afternoon to find out why the blood. Everything looked ok. But he couldn't even keep water down. He wasn't drinking it but had it put in his tube. Gagging and retching. So we decided not to put anything in. He fell asleep and after a while the nurse 'snuck' some water in, hoping it may be better if he didn't know it was there. He threw up when he woke up. He hardly seemed to be there. Just sitting, empty in so many ways. He slept again. He woke up around 7 and had a bit of computer time. His throat felt awful from all the vomiting. He says he can't drink anything because it moves his tube around. he tried a popsicle and I was so happy to see him enjoying something. I gave him a second when he wanted another (each one just a small stick). Celebrating him getting some meds down and the popsicles. Didn't last long. They came up too. Thus the boy that is so down, seeming comatose. He said no to any visits, even though his brother wanted to see him.
Maybe he will sleep tonight. Maybe he will feel better in the morning. Yesterday I had high hopes for today. I know not what tomorrow will bring but I can hope it won't be as painful as today.