Question: What do you get when you cross prematurity, low birth weight, Chronic Lung Disease, a history of ventilator support, wheezing and coughing without any signs of sickness, atopic dermatitis, eczema, and a Y chromosome?
(I’m not very excited about the answer to this riddle…)
You might remember that Jax has been having a difficult time with his Chronic Lung Disease lately. We had an appointment with his pulmonologist today to discuss some of the new issues he’s been having. I was mainly concerned with the nighttime coughing and the wheezing during activity (and at rest) without any signs of a sickness.
While at the appointment, Jax started wheezing after getting all riled up because he didn’t want to lay down on the table to get measured! That was good. The doctor listened to his wheezing then we gave him a nebulizer. Doc was really pleased with the way the medicine helped stop the wheezing. However, he was concerned with the length of time these symptoms have been persisting and the severity of the symptoms.
We are in the Orange Zone (there’s no such thing, really. We just made that up during the appointment!) Basically, Jax is balancing precariously between the Yellow Zone and the Red Zone. This is not a good place to be.
We changed up some of his meds: he will start another course of the oral steroids (yippee), increase the daily dose of inhaled steroids, and start a new medicine called Singular, which he will take daily to help reduce his asthma attacks.
Answer: An asthmatic!
Yes…you read that right. Asthma. Jax has asthma. His Respiratory Action Plan has now changed into an Asthma Control Plan.
And that sucks. For some reason, this has hit me hard. Chronic Lung Disease was a continuation from Jax’s NICU days, it was a illness from the past – and because of that it seemed manageable. I mean, Jax has overcome so many of his “preemie scares:” ROP, infections, blood transfusions, insulin resistance, surgeries, plagiocephaly, motor delays, etc. CLD seemed like just one more thing to cross off our list, you know? It was something that he would beat.
Now, asthma, on the other hand, that’s something new. That’s something for the future. And it just seems so permanent. (Thankfully, there is still a tiny chance that he might outgrow this diagnosis. I’m holding on to that for dear life!)
Now before you all tell me to be positive and look on the bright side, I’m totally aware that an asthma diagnosis is a small blip in the grand scheme of things. I know it could be worse. But there is some serious guilty mom overload here folks! I did this to him. I couldn’t keep him in and now he struggles with the most basic thing of all: breathing.
Well, I’m going to go play with my smiling, happy, adorable, and curious little boy now! Shake off that guilt mama – and get that nebulizer out!