Craziness going on with the Diva!

Lord only knows what to say about the diva. I am full of emotions as i sit here in her room and her hr is 70. Okay so I will start whre I left off. Kenadie had arrived in dallas on Tuesday. Had a blast playing with the kiddos down there. Then check in at 6am. Let me tell you I hate seeing 5am esp when i have to explain dysautonomia to 10 different residents that think my child must be a circus. How much should I start changing for admission?! So then we met with the anastetic doc came in and said btw kenadie has a minor heart block. umm SAY WHAT?! We were not called by our cardiologist. So we just said okay and kept going on. She was cleared for the procedure though. So she has it done then they spring it on me that she has to be npo the rest of the day along with strict beddrest and no they are not giving a sedative! WTH are we in cruelty punishment now?!This is total bull shit! She is an active 19mo and she loves to play. But she was a great trooper and as long as momma laid in bed so did she. She had one heart spell fornanna with a nurse who did not understand the disease so that is always a journey. Nanna did great. So we come home and I take k to the doc on friday for a regular check up after we get back. He has to see her make sure she is in tact i guess. Thank god we like him! He is the one that explained the 1st degree heart block to me. Then I got some labs in the MAIL! Yes you read that right.. The mail! Her protien, liver, and pancreas are off. So I took them up today and he just happen to hear me talking and came out to talk to us. He said I think it is mitocondrial disease. Not the most common type either. Well knock me while i am down. He stated he wants us in cleveland right now. Hello I dont have a dime yet for this trip. But we will do whatever. I will put my house up to ensure my daughter gets a good quality of life. So they will call us this week to tell us what to do next. Friday night kenadie had a 6 minute non responsive to stimuli spell for her nurse. Then I am in her room right now bc she gave her nurse a few of them tonight. I am so stressed. I have 6 more finals to do and this. I dont know how to do it all. I am scared I am going to lose my daughter. I really need our family of friends and peoples right now. Until we get some clarity. She is an amazing little girl. She is strong. I know we can get through all of this!
Btw our little buddy might get to go home this week. Maryn. She needs to get in playing shape! ;)
Also i would like you to keep ridge in your prayers. He is a handsome baby that we met in the hospital some time back. His momma is an awesome one and deals with his stuff great. I should take lessons! ;) He has a RARE bleeding disorder in his intestines. Gets lots of blood. Please pray for no bleeding so they can be at home and for God to heal his bleeds!