Miserable night, and Kidds Kids

Well it was more like a miserable morning. Jude woke up at 4:38 which is not unusual, but what happened next was. He flashed me a smile, and then ten minutes later he started screaming.......and didn't stop until a little after 7am. I am exhausted, and so is he. Poor Em suffered again as usual because I was to tired to take her to school for tutorials, luckily Mike took her We couldn't figure out what was going on with Jude. I kept insisting to Mike that it was a cry of pain, but Mike said it was behavioral. We tried the pain meds but it didn't work. I held Jude, but he cried more. He turned beet red in the face, and was sweating horribly. We checked his incision, but it looked okay. Finally Mike thought of venting Jude's feeding tube, and it did let some air out. Soon after Jude fell asleep, but we are unsure if it was from the venting, or exhaustion. He had gotten himself so worked up that he was in full seizure mode, and they didn't stop even when he went to sleep. When Charlotte the nurse got there Jude was still twitching. She said his respiratory rate was good, but that his heart rate would increase with each twitch. To say the least I am a walking zombie! Mike called a little while ago, and said Jude was up, and he seems okay now.

So today is Kidds Kids day. This is a charity very dear to my heart! I posted on my blog about it last year, and I am repeating this year. Kidds Kids takes over 50 families with terminally ill children to Disney world for a week every year. Every year they play the tapes of when they surprise the families that are going to get to go on the trip, and it's so amazing. It's very touching, and sad so if you listen it's a day filled with tears, but one I think people should hear. One lady pointed out that because of Kidds show she realizes how lucky she is to have two healthy children. That when she listens to the parents of the ill children they sounds so "hardened" because they have dealt with the same issues for so long. So she said she is touched when she hears the parents break down when they see their children so happy at Disney! This charity takes doctors, nurses, staffing, and more with them. It's truly amazing. Kidd said this morning that for a few days they want the parents to forget statistics, and the kids to just have a good time. So if you have a few dollars to spare, please consider helping this worthy cause. http://www.kiddskids.com/page/make-a-donation . I make it a point to donate in Jude's name every year.