Musings of a Marfan Mom

Sleep Apnea Update

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Yesterday Baby J and I traveled to meet his new pulmonologist. He has a sleep pulmonologist, Dr. P, but he also needs a regular pulmonologist. We’ll call her Dr. Friendly.

We waited over an hour to see Dr. Friendly but she was worth the wait! She really took her time with us, going into depth on multiple lung issues. We learned that RSV can cause lung issues for quite awhile after the infection is cleared up and is also linked to asthma, so we’ll be seeing Dr. Friendly every few months for awhile. Thanks to some other Marfan Moms on Facebook, I’ve learned to ask about the RSV shot (given monthly to at-risk children, November through April: RSV season). The doctor told us there is no point in trying to get it approved for Baby J this close to the end of the season, but we’ll start the paperwork in early fall for him to get the shots come November.

Dr. Friendly looked over J’s chest x-ray from the hospital and agreed that his eventration needs to be examined. Luckily, he isn’t experiencing respiratory symptoms from it (chronic cough, wheezing) so it most likely isn’t impeding lung function at this time. We have an ultrasound scheduled for Monday to see how his diaphragm is affected.

While discussing the fact that Baby J still has a runny nose eve a couple weeks past being in the hospital, I mentioned that I frequently get colds that settle in my lungs for weeks and went through a period of getting bronchitis every winter…once it lasted 3 months. I had just chalked it up to Marfan. Turns out that weeks of a cough that won’t go away and frequent feelings of being out of breath (which I have) are indicators of asthma. Dr. Friendly suggested I get some asthma and general pulmonary functions tests done sooner rather than later. How cool is that?! My son’s doctor took the time to point out something that might be a problem for me and explain it, even though she’s not my doctor!

But wait: the best is yet to come! We got the unofficial results of J’s Valentines’ Day sleep study…unofficial because they came from the nurse (we see Dr. P in a couple of weeks & she’ll go over them then).

Are you ready for this?

J’s sleep apnea is GONE.

His destats are also GONE.

His oxygen never got lower than a 94. He didn’t stop breathing at all. No more CPAP. No more oxygen tank.

WHOO-HOOOOO!!!!!!!!!

Now, we’re supposed to stay using the oxygen till we get the official word from Dr. P, but in a couple weeks we should be free of all the machines.

Let this be a lesson to you other moms. When J was diagnosed, you might recall that the attending pulmonologist put a lot of pressure (ok, borderline harassed) me to submit J to two scopes and surgery to “treat” his sleep apnea. The doctors refused to believe me when I said his sleep apnea was due to Marfan syndrome and he’d outgrow it. There were times I wavered a bit, but I kept coming back to my “mommy gut” and my mommy gut told me not to do the surgery. It’s been 7 or 8 months since then and it turns out I was right. TRUST YOUR MOMMY GUT. God gave you that for a reason. Doctors know medicine, but no one knows your child like you.

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5 Comments

  1. Yay! That’s all such inspiring news! Sounds like you have a clear path in front of you to being done with this! Praying for y’all :)

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  2. That is amazing news!!!

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  3. Truly amazing news Maya. I couldn’t be happier about the apnea and oxygen issues …. here’s to many peaceful nights for the whole family.

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  4. I dont read all your updates- ok this is the first time i am reading about your son and i am glad you got great news… My son is 3 yrs old and has asthma- who knew- b/c i never dealt with asthma before- that coughing and coughing was a sign of asthma- i thought it was allerges- until he had a sever asthma attack and was diagnosed- now he takes preventive inhaler everyday…just wanted to say- great news!

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  5. YEA baby J! No apnea is awesome news!!! And it sounds like you finally found the right doctor for your family too. WHat a great update today. :)

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