Evan died yesterday. With all of the hard decisions that we have made, the hardest thing that I have ever done was leaving him at the hospital last night and coming home to our house which is so full of Evan. I slept for awhile, I hadn't slept for 36 hours before then, but now I am awake so I thought I would check in. The next section is long. It tells a little about Evan's last few days and final moments. I know some of you are interested, others probably won't want to read this. Evan had a stomach bug last week, and his blood was really out of wack. We got blood work every day but Thanksgiving. It kept getting worse, but he didn't seem to be getting worse. On Tuesday he had an xray that showed that his intestines were full of air. We've had that before, but his lungs looked good. Wednesday we took him to his pediatrician who said that his lungs sounded fine, but his bloodwork was a little worse. His hemotologist said that we could wait and see realative to giving him a transfusion. We had a wonderful Thanksgiving. Evan was held almost all day, and seemed so comfortable. In the afternoon I noticed that he was breathing faster than normal, but he slept pretty good and was able to have his sats in the 90's (with O2 on BiPap) so we thought everythingwas still good. Friday morning we left for Vermont. He had bloodwork on the way. When we got to Vermont we called and found that his bloodwork had gotten a little bit worse, but he still seemed ok. Still breathing a little faster than normal, but we attributed that to the low Hemoglobin. In the evening he started breathing faster, and when I put him on the pulseox I found that he was having trouble keeping his sats in the 70's. With albuterol treatments, Bipap and O2 I got him into the 80's. Over the next few hours he seemed to get worse so at midnight I woke up Bob, rousted our other two kids and set off for the hospital. Although we didn't say it, both of us were very worried that at the rate that Evan seemed to be getting worse he might not make it to the hospital. I gave him a bunch of albuterol treatments and saline and Bob drove pretty fast and there wasn't any traffic. I called his hemotologist and he called the hospital. They were ready for us when we arrived and we had him back on PiPap with O2 in just a few minutes. They also started pumping IV antibiotics into him within minutes. The transfusion took a little longer, but we have never been processed through the ER so fast before. They increased his BiPap settings, increased O2 and gave him more albuterol. It seemed to help and he got into the 90's for sats. He was awake on and off, and really doesn't like BiPap, but he does like head rubs and being held. He got those things, but continued to work harder and harder to keep his sats up. They did a chest x-ray and saw that his lungs were full of pneumonia and that he had a big pocket of fluid on one side of his lungs. They think that it was bacterial because of how clear his x-ray was on Tuesday and what a mess it was Saturday. We were offered intubation and draining of his chest. We said no -- which was consistant with the limitations that we had put on Evan's care, but that we wanted to keep going with O2 and BiPap and get more vigorous with chest PT. When he was breathing more than 80 times a minute, we couldn't take it anymore. We had them him give him his normal dose of ativan. We hoped that if he relaxed he might let the BiPap work more, but we also knew that if he really needed to breathe that hard we were putting him in a more difficult situation. It really wasn't a hard decision. We couldn't let him suffer that way. We gave him ativan and held him. He relaxed a little. Bob and I both expected him to surprise the doctors again, but he didn't this time. He slowly dropped his sats. I don't know how long it took, but once his heart rate started to drop we took all of the stuff off and held him and kissed him. He died in mine and Bob's arms at 10:50 AM on 11/27/2004. We held him a long time. After giving him a bath and getting him dressed he seemed to have a little grin on his face, and he seemed to be peeking -- he really looked like Evan. Bob drove to my parents (where Alec and Samantha were) and told them in person. We left the decision to them on whether to go see Evan or not. I was so proud of how brave Alec and Samantha were. They gave him kisses. They also worked with the child life specialist and made hand prints of both their hands and Evan's. For how difficult as this was, it could have been so much worse, and without a different outcome could not have been better. Evan died in our arms in a hospital that knew him and us. Many of Evan's favorite nurses were there, even though it was the Saturday after Thanksgiving, several of Evan's favorite doctors were on call and stopped by. For a non-verbal 4 year old, Evan sure made a lot of friends. It must have been his winning smile!