St. Mary's visit

So, today was a little crazy. On Tuesday, Harlie was getting worse again. I had to suction her every minute it seemed. The pediatrician called to say that the culture results came back from last week. There are 2 germs growing that could lead to pneumonia. Luckily, she put her on antibiotics last week just to be on the safe side, so hopefully that helped. But one of the germs is only moderately sensitive to the antibiotics, so she said we might need to get something more hospital grade. Then the night nurse came and during the night Harlie got worse. I love that our night nurse works at the pediatrician's office. By the time we got up, she had already spoken to Dr. Smith and they already had a plan of action. She wanted me to take Harlie to St. Mary's ER for chest x-rays and an RSV test. I have to say that it was the best visit I've ever had to an ER. Dr. Smith called ahead, and when I got there, they were ready for us. So, no waiting and the nurses were so eager to help. They were all over Harlie. None of them had seen a Goldenhar patient before, so some were just curious, which was fine by me. The more people that learn about it, the better, I think. The best thing about our visit today, is how different it felt for me. I knew so much more about what was going on. It made me realize just how far we’ve come in the past 2 months. One nurse was in training and the senior nurse told her to always listen to the moms of special needs children – they know their care better than anyone. When we were preparing to leave the NICU, the nurses told us that this day would come. They said that one day I would be telling the nurses what Harlie needs and how it should be done. It seemed so hard to believe at the time. Anyway, no RSV, and the x-rays are questionable. I think the remains of the chest mass are complicating matters a bit. They gave her a shot of Rocephin (antibiotic) and when I take her to the pediatrician tomorrow, she’ll get another one. Hopefully that will take care of it for good. Well, gotta go. Talk to you later,Christy