TrachKids.org

Rylee passed away August 9th 2009 in our arms. It was absolutely the hardest thing we have ever had to do. On August 6th, we were under the impression we were having a meeting with the Doctors to find out when Rylee's heart surgery would be... however... it didn't go so well. We were told that there was really no option for the heart surgery; more less told they wouldnt' do the heart surgery.

Still the waiting game. Rylee's been having some pretty horrible days .. where they are having to raise his PEEP and Pressure on teh ventalator, as well as raising his oxygen to keep his stats up high enough that he doesn't go into heart failure. It's hard. So Hard. To see him in so much distress is incredibly hard and stressful. But we must keep our hopes up.