We finally got home from the hospital on Monday, April 21st.  Once we got him home, we got him in the house, bathed and all situated.  He was worn out, so he took a good nap.  The home health nurse came and helped with meds and things while we got everything washed and put away.  I slept downstairs with him that night and he really had a great night.  On Tuesday, he had speech therapy.  He was happy, smiling, trying to be his little trickster self, and he even laughed and chuckled at her jokes.  After therapy, he started acting like he was in pain again like before.  I was beginning to wonder if we had made a mistake of bringing him home.  He was having stomach issues all day.  He had a decent day that day.  Then the night nurse came.  I had just given him some Tylenol because that seemed to be what worked while in the hospital.  It helped him this time as well.  He would walk up every now and then and cry, but the nurse would get him back to sleep.  
On Wednesday, it was the same thing, if not worse!  I felt so sorry for him!  We gave him Tylenol and Atarax to try to get him feeling better.  I did end up calling the hospice nurse and she spoke with her provider, which told her to have me stop certain meds!  So I did!  That night, the night nurse was amazed at well he did!  She said," he did so good!"  She said he slept really good and woke up one time, sat half way up in the bed and looked over at her like he was making sure somebody was there with him and he went back to sleep!
Thursday, was the worst day!  He cried almost all day, off and on!  The rescue meds weren't seeming to help either.  He was very exhausted as well because he had PT and OT, almost back to back.  We done everything we could to try to get him comfortable!  Right before the night nurse arrived, I got up in the bed with him!  He loves me to get close to him and rub his head.  He watched wrestling  for a while.   He started getting his night time meds and we sleep a while. Wake up hurting, get calmed down and it stayed like that all night!