My Son’s Good News From His Checkup With the Pulmonologist

Monitoring breathing issues is an important part of living with Pompe disease

Keara Engle avatar

by Keara Engle |

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Last week, my 4-year-old son, Cayden, had a routine checkup with his pulmonary specialist. These visits occur about every six months. While we are certainly used to the appointments, we left with a great report this time, which isn’t always the case.

Cayden’s pulmonologist has been seeing him since before he was 6 months old. It helps to see the same doctor for a prolonged period of time because they really get the chance to know your child and understand what’s normal for them. Due to Cayden’s infantile-onset Pompe disease, his lungs and diaphragm don’t work as they do in most children his age. Appointments with a pulmonologist are necessary to ensure everything is OK.

Typically, at these appointments, we discuss whether Cayden has been sick or hospitalized since the last time he was seen. If the answer is yes, we talk about what occurred and how he handled it. Thankfully, Cayden has not been hospitalized in the past six months, which is a huge accomplishment for him considering all the times it was needed last year.

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We also discuss Cayden’s BiPAP usage. He’s been using a BiPAP machine to help him sleep every night since he was about 10 months old, due to his weakened diaphragm. He can’t breathe well on his own when he’s in a deep sleep, which makes his carbon dioxide levels rise, causing him to wake up a lot at night.

Things have been going well with the BiPAP, as usual. However, the pulmonologist told us that he wants Cayden to do an updated sleep study before his next visit so we can see if he’s now able to sleep without the BiPAP. He hasn’t done a sleep study since right before he turned 2.

The doctor expressed that Cayden has been making amazing progress in his respiration. If he’s able to sleep well without the BiPAP, that’d be great. However, I won’t be disappointed if he still requires the machine because we’re already used to using it every night.

I called to schedule the sleep study, but the waitlist was much longer than I expected, and they can’t get Cayden in until April. I was hoping that we’d be able to complete the sleep study before January, as that’s when Cayden’s little brother is due. I will have to see if my mom can watch the baby overnight while we complete the study.

Because Cayden’s next pulmonology appointment is scheduled for March, I’ll have to see if we can push it back a month in order to have the results from the sleep study. This shouldn’t be an issue, but it’s always important to make sure the doctor is OK with any change of plans.

All in all, we had a great checkup with the pulmonologist. It’s not always easy traveling more than two hours away to visit Cayden’s specialists, but I know it’s important. Receiving a good report always makes the trip a little less stressful as well. I can only hope that his next appointment brings the same results, if not better ones.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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