Musings of a Marfan Mom

New Pulmonologist


On Wednesday I took Baby J to meet his new pulmonologist. His former doctor was very insistent that we see This Particular Doctor, and it turns out for good reason!

Usually, I have It together when it comes to doctor and therapy appointments. Everything is scheduled out in my ical and in the 18 months of M being in therapy I have only double-booked an appointment once. And then we got to Dr. P’s (P for pulmonologist!) office, 5 minutes late for J’s 1:00 appointment. Except the receptionist informed me our appointment had been for 10:00 am instead. No idea how I missed that! Another receptionist asked if I had the paperwork they’d mailed me last month but of course I’d forgotten it at home…packed away in some box.

“I’m really sorry, we just moved, it’s in a box somewhere. But, I’ve got all of his medical records from every single specialist right here!”

I got The Look of Disdain. You know the one. Then she informed me the doctor certainly would not be able to see me today without that paperwork because it would take sooo long to fill out. So, I apologize for the 3rd or 4th time and then, because I’m desperate (these appointments book way in advance), called out to her retreating back “Can you tell the doctor my son has severe sleep apnea with destats and we’ve been 3 weeks without a CPAP now and I doubt (insert name of crappy oxygen provider here) will give it back to us without her help?”

And that is how we still got an appointment that day, folks. Thank. Goodness.

Also, the paperwork took me a couple of minutes and then the doctor told me it wasn’t even necessary anyway. So there.

Dr. P is, so far, terrific. Turns out our former hospital really does not have a great sleep apnea program. Dr. P, however, is nationally known. She looked over all of J’s records (which she’d actually gotten several weeks ago) and said that she’s not sure his sleep apnea is as severe as we were made to believe, though she is concerned about his destating (dropping of oxygen levels) at night. He went down to 75% during his sleep study last month, whereas during his June sleep study he only went to 87%. In terms of overall severity though, I guess doctors who are less versed in sleep apnea consider anything more than 10 events an hour to be severe (J has had 12). Dr. P considers 30+ events to be severe. The CPAP mask doesn’t fit that well because of his size and it’s hard to get a baby that young to sleep well in it, so it might actually be causing more problems than it’s helping. Her guess is that J only needs oxygen, like he’s been getting.

In order to be sure, however, we need – you guessed it! – another sleep study. Dr. P will actually be around that evening, so she is going to have the techs check in with her all night long so she can tweak procedure as we go. J will start off with no oxygen or CPAP and we’ll go from there. She’s not promising that he won’t need the CPAP but we’re keeping our fingers crossed. Then, we’ll work on figuring out why his oxygen levels are dropping so much during sleep.

In the meanwhile, she said to forget trying to get our CPAP and pulse ox back from the oxygen company. She is going to see if she can get our insurance company to let us get supplies from someone else instead. Seriously…every doctor or patient I’ve talked to hates this company and we moved from tanks to a concentrator just so I have to deal with them less.

I’m feeling pretty lucky to be so happy with Baby J’s specialists thus far! Once the boys have started back up with their other therapies (hoping to hear back from J’s Help Me Grow coordinator this week & am finishing up some paperwork for M’s county services application), I can get started finding some local specialists for myself! Most of my Marfan care will be at a well-known clinic out of state, but I want to be in with some local people too, just in case.

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  1. Sounds like J got a great new pulmonologist! I wish that Lee could get a referral for one. He hasn’t had a sleep study in years. His old one refused to see him again unless he used his c-pap for 2 weeks straight. Try to convince a 10 yr old that it’s in his best interest. Any referral out family doc made to a different doc went right back to the old doc. Maybe now he is an adult.


  2. Glad you’re liking all the specialists! I hope all of your other things through the county go as well as everything else!


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