After having pneumonia for two months, my baby was diagnosed 3 weeks ago with Cystic Fibrosis and I am now to the point I can talk about it and not cry. He was hospitalized for two weeks and developed hydrocephalus from his vitamin A levels being increased too quickly. For two days I thought my baby not only had CF but a brain tumor also. Has anyone else experienced complications during the initial diagnosis and treatment? I am learning that CF patients have to go back to the hospital every so ofter for 'clean outs' How long are kids able to go between these clean outs? My baby is home now and I am trying to do my best to adjust. He is almost 8 months old and HATES to wear his nebulizer mask. Any suggestions?
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