5/3/06- Talk w/ Pulmonologist

Cedie had a good night last night and a good day today. She was happy and playful. She got some new toys from Child Life Services.

Her pulmonologist called me this afternoon. He had a long discussion with her cardiologist regarding her cath results. They were able to rule out the heart as the reason for her vent dependence and the excess fluids on her lungs. Therefore, we have to look at the lungs more closely. She is going to have a CT scan done tomorrow (Thursday). Her heart biopsy results will be back on Friday. If they do not find anything with those results then it is likely that she will need the open lung biopsy and muscle biopsy performed. We have been discussing/debating these two procedures for months. However, the doctors feel that we are at the "end of the diagnostic rope". They have tried every other test they could come up with, short of these two more drastic procedures. We will meet with him on Sunday. The surgeries could be done as early as the beginning of next week.