A hard day...

Today Ashton woke and was exceptionally grumpy. Nothing we could do
would calm him down, the only thing that worked was my lying with him in bed.
The team of neuro-surgeons came in early, as they do every morning, but this morning
they said they thought we could go home tomorrow. I was a bit apprehensive because
I feel like something terrible will happen to him again if he isn't being constantly monitored.
They reassured me he would be able to heal better in his own environment and we can
continue his Physical and occupational therapy at Dominican. He had a bath at about noon and then went to the gym down the hall for some physical therapy. At one point the therapist wanted him to walk to me-with help-and as he came towards me in his little hospital gown, I couldn't help but notice how he has lost so much muscle tone in his skinny legs. It has only been a week since surgery, but he has changed so much. There was also a full length mirror along one wall and I asked the therapist to make sure he didn't catch a glimpse of himself. I think it would scare him too much. He has noticed his hair is gone, but I've told him it will grow back real soon. Thank goodness he won't be able to see the large incision that runs down the back of his head. I think his therapy wore him out because he just cried and cried the rest of the day. At about dinner time I noticed his left eye--the side that is paralyzed--was buldgeing a bit. The I noticed the left side of his head was a bit swollen and when I put my fingers on it, it felt squishy. I immediately called the nurse who also noticed these new problems and she paged the dr. right away. I started to feel that horrible feeling in the pit of my stomach again, like something was really, really wrong. I was sure he would be sent to CT and we would find out his brain was swelling again and he would have to go to surgery. After what seemed like an hour the dr. showed up and examined him. She pointed out that his eye that is bigger is on the side of his face that has no movement and it was open wider as a result. The puffiness on his scalp was caused by the tube that was in his brain draining fluid. When it was pulled out, a bit of fluid must have gotten under his scalp and since he prefers to lay on one side, it collected there. I was so relieved. The events that happened last Wednesday traumatized me so much, I cant shake the feeling that doom is just around the corner. So, we are leaving tomorrow morning, It will be a long weekend of watching and worrying. Ashton is so happy to go home, he misses his brother and sister so much. He just lights up when they come visit. Speaking of visiting, we had a special visitor come by last night, Elmo. Ashton loved seeing him and had a huge smile the whole time he was here, this place is so wonderful. Ashton is sleeping soundly now hopefully dreaming of sleeping in his own bed, finally.