A Glimpse Into Life with Chronic Lung Disease

Jax has Chronic Lung Disease (CLD), which is also called bronchopulmonary dysplasia or BPD. “CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing.” Jax was on a ventilator for 34 days, SiPap and CPAP for 16 days, high-flow oxygen for 13 days, and low-flow oxygen for 71 days. (Jax came home on oxygen.) For being born at only 23 weeks, that’s pretty good!

But all of that support caused lung damage. The lungs of premature babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs.” (Source)

When Jax is around 2 or 3 years old, he will “out grow” the diagnosis of CLD. At that point, and if Jax is still having breathing trouble, the diagnosis would change to asthma or related diagnosis. My hope is that Jax’s lungs continue to get stronger so he grows out of the complications entirely!

Here’s a glimpse into life with CLD, from Jax’s perspective…

Mom said I was doing a good job breathing today. I’m not sure what that means, so I’ll just smile. She seems to like that. But sometimes, she gets all teary-eyed and says things like “oh, baby – I’m so glad you’re here!” Like, duh, mom – where else would I be?

Last month, I got a brand new tooth. (I have 8 of them now!) I wasn’t a big fan – it hurt and it made my nose run. Although, I do like to stick out my tongue to see how much snot I can lick up. Mom told me to stop doing that. Whatevs, mom. I don’t know what the big deal is.

After a few days with a runny nose, I started purring like a kitty. Mom said it’s called wheezing. (All that snot must have made it’s way down to my throat and lungs – mom said “I told you so!”) I started purring really loud especially when I practiced running and playing hide and seek. After a few minutes of playing, I could hardly breathe at all. I had to take a break and read some books. That was hard for me, because running is one of my favorite things to do!

Mom always listens to the purring to see if it happens when I breathe in or when I breathe out. Sometimes, it happens when I breathe in and that means my airway is collapsing. This is because I have a problem called bronchomalacia. My mom says my “floppy airway” makes it hard for me to breathe, too.

Sometimes, when I play, I cough so hard, my face turns purple. It’s hard for me to stop coughing and catch my breath. Mom always looks scared when this happens. She tells me to “just breathe, baby.” (I think I remember her saying that to me a lot when I was stuck in that plastic box with all the tubes and wires.) I get scared sometimes, too. My eyes get real big and I start to panic. I want to breathe!

Mom says it’s time for my medicine. I get two: a steroid and Albuterol. Mom gets out the nebulizer machine. It’s shaped like a seal, so mom and dad call it Sarah the Seal – like they are trying to trick me into thinking that she’s my friend! Then mom puts a mask up to my face and blows disgusting medicine in my mouth. I hate it. I try to run away. Mom thinks she’s all smart by giving me my piano to play with – she must think it will distract…oh – HEY! That piano plays some great music! Maybe I’ll just sit here a while and play…

After 25 minutes, the medicine is finally gone. I’m so glad! I don’t like that medicine at all – it makes my mouth taste funny and it makes me all jittery and hyper. Mom always tries to get me to sit still so I can breathe better, but that medicine makes me want to jump on the couch and chase the balls. I can’t breathe when I run and the medicine that helps me breathe makes me want to run! Mom calls that a Catch 22.

During the night, I wake up a lot because I can’t breathe. I start coughing really hard and it scares me, so I start screaming. Mom says it gives her a heart attack when I do this. I can’t help it, though. I’m real sleepy, but sometimes I just can’t catch my breath. Then mom has to wake up and give me more medicine. Sometimes, she lets me sleep on her chest so I’m not laying flat – that seems to help me breathe better. Mom says she’s sick of me waking up 3 or 4 times a night – she says she’s tired! So am I!

It’s been a month since that new tooth popped out, and I still have to take that nasty medicine two or three times a day! Mom calls this the Yellow Zone. If I start needing my medicine more than three times a day and I’m purring really bad, that’s called the Red Zone. If that happens, then I have to go see all my friends at the hospital. They are nice there! But they stick me with all kinds of sharp things and put a fun, glowing light (called an oximeter) on my foot and expect me not to play with it. What are they thinking?

I hope I stay in the Yellow Zone so I can stay at home and play with all my toys! I think I’m getting a little bit better – I’m not purring as much (and it’s only happening when I play real hard) and I’m only coughing a few times a day. Maybe I’ll be able to cut back on the medicine pretty soon!

Mom says all these symptoms would be worse if I caught a cold or other sickness. That’s why I only get to play with my mom and dad (and sometimes Grandma) during the winter. Mom calls this isolation. I get sad when I see kids but can’t play with them. Hopefully my lungs are stronger next winter so I can play with friends my own age!

I hope the next tooth I get doesn’t cause this much trouble!

Tough Guy

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18 thoughts on “A Glimpse Into Life with Chronic Lung Disease

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  8. Alana

    Wow! Even with my own CLD prems this was an eye-opener. Reid had nebulized budesonide inhalations while he was in the NICU (he was on the jet ventilator for quite a while), but thankfully they weaned him off before he came home. Can’t imagine how tough it must be to keep your little guy still for that long (for something yucky, too!). Way to go, mama (and Jax). Hope it improves soon!

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    1. Jax Mully Post author

      Thanks for the comment! It is almost impossible to keep Jax still for the nebs. Thankfully he is easily distracted! :) I’m so glad your little ones don’t have breathing issues anymore – hooray!

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  9. Wendy

    Andrea, it is so nice that you taught Jaxson
    to tell and write a story as well as you do.
    Wonderful way to let us know what’s going on. Hugs to you all.

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    Reply
  10. Leslie

    I always forget, what’s the difference between wheezing on the inhale vs. the exhale? I know our doc always asks that when Sander starts wheezing.

    Good job with your breathing, Jax! (And your running, and playing, and allowing yourself to get distracted while on the nebulizer!)

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    Reply
      1. Tricia Jensen

        Andrew have you ever thought of getting a cheap stethoscope? I use mine quite a but on my kids when i arm trying to decide nebs and how they truly sound. (i could even give you a lesson)

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      2. Jax Mully Post author

        Great idea, Tricia! I hadn’t thought of that. I’d love a lesson – I have listened while at the doctor’s office, but could never really tell what they are talking about.

        Like

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