A Lung Update, Part II

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 futureAnd 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.

*sigh*

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!

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Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool.

6 thoughts on “A Lung Update, Part II”

  1. Having suffered with asthma my whole life I can empathize with this diagnosis. I will tell you that even if he doesn’t outgrow it, the asthma still will get better over time. You know I had severe asthma as a child and now as an adult I haven’t been hospitalized in 20 years!!! The medications available now are also so much better for treatment. If you can, try to choose to look at this prognosis as something that will improve over time. Also know that cute little bugger is always in my thoughts and prayers. And so are you Andrea!

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    1. Thanks, Jen! I know how much you have struggled with asthma. I’m very thankful for the medications that are helping Jax breathe better. It’s also no big deal to Jax because it’s all he knows! 🙂

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  2. Sorry to hear this. Yeah, maybe it could have been something worse, but when you add it onto the pile it really seems like a lot. I think as moms we just want to fight so hard for these little ones and take away all their suffering (suffering that they wouldn’t have had to experienced if they could have stayed in there longer!), but stuff like this is a reminder that you can’t. It would be surprising to me if you didn’t feel sad! You are doing such a great job though, and in time you’ll adapt to this just like you always have.

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  3. Good news bad news. Hopefully a new diagnosis, and some new medicine will help get all some relief. That darn “Mom Guilt” it is such a pain in the derriere, had to deal with it myself again today(14 years and counting) :):) Enjoy your little wheezer, it will get better and I hate to say it’s not to bad a diagnosis. My brother is 41, and has had it since he was 6 months old. The medications available today have made his life so much better. Jax is in good hands, you and Steve as his parents and the doctor and nurses who have.and continue to help him.

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