Saturday, March 26, 2011

At Least It's Not CF

"Let's stop calling it pneumonia and call it what it really is - ectasis." The pulmonologist explained that mucus trapped in the airways would produce a cloudy X-ray and that Jacob's X-ray series showed a moving cloud, which was not pneumonia but mucus being moved around by the air in his lungs. He believed that Jacob's first pneumonia was viral because of his persistent fever and how long it took before Jacob seemed to rebound even though he was on intravenous antibiotics. He also does not believe that Jacob has asthma because he has no allergies.

Ectasis or bronchiectasis is a lung disease with an underlying cause. The pulmonologist ordered a swallow study to determine if Jacob is aspirating liquids. If the test is normal, then we will need to rule out acid reflux. Then we will have a follow-up appointment in six weeks. In the meantime, Jacob will continue to have breathing treatments (Flovent and Ventolin inhalers) and I will consult with Early Intervention (heads up EI Team) about chest physical therapy.

How many times did I ask for a pulmonary doctor during our hospitalizations? How many times did I suggest that there was something structurally wrong?

1 comment:

  1. Good for you for being persistent. I'm sorry it took so long and is such a fight sometimes to get what you know you need. Hopefully they will be able to get to the bottom of Jacob's respiratory issues and find a treatment that will work.