Tomorrow

So tomorrow is coming. I have been sick the past few days and trying not to get Haley sick. If she is the doctors will reschedule. We will get to the hospital about 10:30 am, the TEE and cath will start about 12:30. She cannot eat anything after 630am, I always struggle between waking her up at 6 so she can eat something or letting her sleep in. Maybe this time we will have a before bed snack and then ill let her sleep in.
I am nervous, not really about what news we will get but about explaining to Haley if surgery to fix the holes is still not an option. She understands what that means. Even if they are fixable that doesnt mean the PH will be fixed too.
I learned recently that they have a pediatric PH research fund. They need to get to 1 million dollars to start sending money out to get research started for kids. Right now there is nothing. They have 9 meds that are approved for adults, 0 for kids. Haley is taking adult meds just a smaller dose. Does it work? Is it safe? We dont know right now. So now that I have found a kids fund, Haley and our family want to do a fund raiser for that goes straight to the pediatric fund! It will be awhile down the road but we will let you know. Haley is really excited about it, I asked her why she wanted to do it and she said, "I dont want to be sick anymore." We have talked about how the research would be for finding treatments for kids and hopefully one day really soon a cure. So they need 1 million to get started, right now they are at $801,000. That will be an awesome day when we can have some research for kids!
It really sucks to have no answers.
I will have my computer at the hospital. There will be lots to hear tomorrow, but I will for sure post when she comes out and is doing well. Then it may be wednesday or thursday before I can get to writing out what is going on, bear with us.