Seans heart rate dumped Monday into the 50s and his stats were really not good. His blood pressure at one point went to 170/90 after it had been really low only moments before and this seemed to happen a few times. He was developing a fever again and his body was so swollen to touch him anywhere on his arms or legs left finger impressions. I spent awhile in the room alone with him and told him how much I loved him and a few other personal things that I had been needing to say to him. His mother and I discussed the heart rate and the fact that if he went into cardiac arrest that the nurses would do nothing for him due to the DNR order and that was very bothersome to know. We sat with him on and off all day and had his family come again to see him. We all had collectively decided that Sean was no longer with us except in body and that we should turn off the ventilator. He had not been responsive like before for at least two days and the doctor was convinced he was declining fast. Around eleven in the evening on Monday we gathered in his room for a few to sit with him and near twelve the nurses came in and started disconnecting the tubes and so forth from Sean. I kissed him on his cheek and told him I loved him so much. We were asked to stand behind a curtain as they removed the ventilator tube and then we moved back beside him. They had removed all the tubes and so forth and he only had a oxygen mask on his face. He was breathing at 70% for a few moments then his heart rate was going down steadily. I held his hand and rubbed his head and talked to him as much as I could. He was circled by his mother,father,brother, sister in law Jennifer,Uncle Bob and me. He had a few gasps for air and he left us peacefully. I will miss my beautiful angel so so much. My heart aches with the loss of him and I do not believe I will fully grasp his passing for awhile. Thank you all so much who have followed this and fought Seans battle with him through your comments,thoughts and prayers. We love you so much and wish you the best. I do not know if I will blog anymore here but I will consider it. Rest in Peace sweet Sean.