Friday, November 15, 2013
I got a call from Primary childrens today. They said that Lila's echocardiogram came back and there were some changes from her last one. They said that it looks like her heart is functioning 29% less than it use to. It also looked like her heart valves were dilated. Oddly enough it went to the ENT doc so they also said they couldn't really interpret what that meant and to call cardiology to set up an appointment. It is always so weird to receive news like this. I know its coming but when they finally tell me that it is happening it feels like a bad dream. I knew heart issues would arise, (our friends Vici child died because his heart valves were so dilated that he couldn't pump blood anymore) but a small part of me thinks that maybe Lila is immune to the severe vici symptoms. I may be paranoid but I feel like things are starting to build up. We added cardiology and nephrology this year, potassium medicine and still can't control Lila's ever increasing and sad seizures and suction is a constant issue. I am a little nervous. I still need Lila. She is doing much more good to me than I am for her and I feel like she is my buddy, my ever loving, patient and kind friend who I share my day with. We are in this adventure together and I can't imagine it without her.