Starting this weekend, Joy and I have been advocating for Julian to be seen by a pediatric pulmonologist because his respiration rate has been high since birth (chronic tachypnea). We have been advocating for this because our team at UW Medical Center ran out of ideas and thought it made sense. Unfortunately the pediatric pulmonologist all work out of Seattle Children's Hospital, ironically just one mile down the road. Apparently it's notoriously difficult to get them to visit. After "advocating" (in this case think of that as "East Coast" advocating) with any one who would listen willingly or unwillingly and seeking and receiving help from our community we were able to get a pulmonologist to visit Julian, assess the situation, and ultimately prescribe oral steroids, which should hopefully help him.
Tachypnea is bad because
- Julian burns energy that would otherwise help him grow
- it's often a tip off that Julian's heart might be working too hard leading to the heart muscle growing in weird ways (aka right ventricle hypertrophy, RVH)
- Julian can't learn to swallow when breathing that fast. He's 38 weeks now so learning to swallow now is important because if we miss the window it may be hard for him to learn how and/or he may have various texture, taste peculiarities.
Julian is tachypnic because he chronic lung disease (CLD) of prematurity. His lungs are "stiff" from all of the mechanical assistance he has received coupled with his small (remember he's 0.2 percentile) lungs.
Also, note that children with CLD tend to stay in the hospital longer.
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