Namine met with her pulmonary doctor. We were met with unexpected good news.
Every six months or so, Namine has a checkup with her pulmonary doctor. She does some breathing tests, and they tell her to continue using her inhaler. Well, that’s what we expected, anyway.
Namine was born with Pierre Robin Sequence, a birth defect that affects the growth of the jaw and airway. When she was a baby, she had a tracheostomy tube so she could breathe. Through surgery and her own natural growth, she was able to be decannulated — have the trache removed — and she’s done well on her own ever since.
Ever since she was little, Namine has needed breathing treatments. When she still had a trache, the treatments were in the form of a nebulizer. Since getting rid of the trache, she’s used an inhaler. At this last appointment, however, we got some big news: she no longer needs the inhaler year-round.
I want to back up a bit, in order to explain why this is such a big deal. First off, to need a tracheostomy at all, the situation surrounding your child’s breathing, airway, and lungs has to be dire. There really can be no other solution, when the last option is to cut a hole into your kid’s throat so they can breathe.
When this happens, it actually becomes easier to breathe (as far as I have learned, at any rate). More to the point, the lungs don’t have to work as hard to move air; there’s less space that it needs to travel, especially through the filtration system that is the back of your mouth and throat. (It also becomes much easier to get sick as well, again due to losing the body’s natural air filtration.)
Because the lungs don’t need to work as hard, the muscles atrophy: they become weak. So when (if, in many cases) a child, or even an adult, is able to be decannulated, the lungs have a hard time catching up to what would otherwise be considered normal duty. The result is the classification of “lung disease.” It’s not actually a disease, but the end result is much the same — difficulty breathing.
Over the years, since getting rid of the trache, Namine’s need for an inhaler has gotten less and less, but she’s still pretty much always needed to take it at least once a day. Now, however, her doctor thinks that’s no longer necessary. For the summer months, Namine doesn’t need her inhaler at all. This is a big step for Namine, and another sure sign that her lungs are getting ever stronger.