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Bailey was hospitalized on Wednesday for acute resp. distress. We just got home this evening. She is doing better, but not great. I'm still worried about her breathing. That is why I'm still up. I'm sitting here listening to her. They started her on a new medication to help dry up her secretions a little. She has trouble with secretions even when she is healthy. She slept all night last night without needing any O2. That never happens. I hook her up to her monitor every night hoping that is won't go off, but it always does. So we have to fight her to put the O2 on her every night. She was sleeping with her mouth open last night so that could be the reason for not needing O2, but I am hoping it's the new med. and we can say good-bye to the O2.
One of the nurses found out that Bailey has CHARGE syndrome. She came to me and said that she could not believe what she was hearing. I was puzzled. She said that it is a rare disorder and that none of the nurses had ever heard of it. That did not surprise either one of us, but she then said that there was another child there with CHARGE. What are the odds of that happening? Anyway, I was able to meet the other child and her parents. She is 11 yrs old. I was amazed at how similar thier personalities are. We didn't get to talk long because both of them were being discharged, but we exchanged numbers and plan to talk soon. Her mother did tell me that she knew the moment she walked into the room that Bailey has CHARGE because of her facial features. Another funny thing was they both were admitted on the same day and discharged on the same day. Anyway, that was interesting.
Krista, did Anika ever get to to on that Disney trip and if so how did it go? Also, did you get to see the surgeon about the fundo and if so how did that go?