Update

Hello everyone,
Again I have to break into her blog but this time it's not as fun. Tuesday morning around 11 Julie's brother took her to the ER at CMH. She has been having a rough last couple of weeks and when the elephant wont leave her chest it's time to go to the hospital. I know it should have been the zoo but for some reason the hospital has a way of getting that big guy to go. :)
I have to say I haven't seen Julie not be able to breath like that before, for so many hours. They tried their infamous breathing treatments, which never work, they walk around in a clueless state and thankfully call her doctors she has been seeing and finds out what they want them to do. So around 6 they told her they needed to put her on a Bi Pap machine. It would do the breathing for her, and as long as it works then they wont have to intubate her. They moved her to CCU at around 7 pm that night. There never seemed to improvement but Julie insisted she didn't need the machine. The nurses said it can't come off and told her they will clean her face later and take it off for a minute for that. Around 11pm Julie convinced them to clean her mouth out cause it was so dry. She wanted to show the nurse she could do without the machine. After the nurse cleaned she gave her a few minutes with it off then realized she was doing OK so she gave her 20 more minutes then realized she was still OK so she let her keep it off.
Julie only slept about 2 hours that night and the next morning her local pulmonologist came in and saw her. Just to give you a hint of the presence of God, he told her that her body is working four times harder than a person with normal lungs would and that it should be wearing out. But somehow she still manages to breath on her own and every test shows no signs of wear on her heart. He can't explain that......but "we can". They took her for a VQ scan to make sure no clots had formed in her lungs, test came back good, no clots. But when they took her to do that they had to lay her flat for the test which lasted 15-20 minutes and when she came back she needed to go back on the Bi Pap for about 30 minutes.
Julie had been dealing with a recent ear infection and any time you have infection you come off the transplant list. So Wed. morning when her Dr came in he cleared her of her infections and called UCLA and they have put her back on the list.
We are hoping she will be moved to a regular room today but we will have to wait and see how she is doing.