Cold fingers have been playing along my spine today. Firecracker has caught whatever virus I had and is coughing. Her school nurse even called today, asking to use the nebulizer sooner than indicated. Pneumonia, I worry. Pneumonia, pneumonia, pneumonia. We have spent a lot of time with Firecracker in the hospital with pneumonia. So today I have a dark feeling of dread. Isn’t it odd that I find this more sinister than the upcoming brain surgery? I guess it is because I remember how long she was on oxygen after her birth, and how the nurses gave me steroid shots in the hopes of maturing her lungs before I finally gave birth. They only got to inject 2 of 3. Would that third shot have done the trick? Because she was so premature, she has chronic lung disease. That sounds so ugly: chronic lung disease. I prefer the way the pulmonologist termed it: bronchopulmonary dysplasia. There’s nothing to be done about this chronic lung disease. They can’t remove it the way they can remove a tuber from her brain. She’s stuck with it, on top of worrying about whether the tuberous sclerosis will affect her lungs as she gets older and cause LAM--lymphangioleiomyomatosis--which can only be cured with a lung transplant.
I've spent almost 6 years now worrying about Firecracker. Those 2 months in the NICU after her birth were just the start of an endless journey.