CPAP Update

It's been a few weeks since I have said what's going on with Justin and his CPAP, so I wanted to make sure you knew that things are going much better!!

After my last ranting post, my awesome aunt took pity on me and she called to offer some suggestions.  Not only is she a nurse, but she also knows a lot about insurance and DMEs (durable medical equipment companies) and she is a long time CPAP user herself!  A wealth of information right there!  She explained to me a lot about the different features of the CPAP machines and masks, plus what other things are the most influential and what I needed to make sure to focus on changing and adapting to make it better for Justin.  When we finished talking I felt much better about what I needed to do and hopeful about working this all through.

So I ordered Justin a new pillow and we just got it this week.  It is firmer so it doesn't push the mask off his face as easily.  My aunt said that having the tube go over his head was a much better option than the tube that swivels around the front.  I tried taping the one we have over his head, but it sticks out too much and by the time it can reach his head, there is nothing to tape it to except well, his head.  I don't think I can do that.  :)


I was also able to talk with another friend who uses a CPAP machine and get his insight.  His machine is much different than Justin's so it was good to see something in person rather than simply pictures on line.  Looking at pictures on line and talking with my aunt helped me to understand what our options are so I can push for the right things for Justin.

I didn't even realize that there are so many different types of actual CPAP machines!  And some of them have really cool features:  The flow rate adjusts automatically based on how it senses you are breathing, they have ramp features so the flow starts out low and then increases to what is prescribed by the doctor, the machine senses when the person is breathing out and it decreases the force of the flow so it's not fighting the exhalation.  Very cool!

Before I could even call the DME and make an appointment to see all their machines, we got a visit from them to check our data card to monitor compliance.  (They check to make sure we are using the machine and how it is going for the patient.  They are checking both for the doctor and insurance.)  They installed a modem so they can follow all of Justin's readings in real-time.

By the time the holidays were over and I felt mostly recovered from my bout of illness, I was finally prepared to face the DME.  I called and asked for an appointment to see all their equipment and it turns out I don't get any options.  The doctor prescribed the specific machine we are using (which is "top of the line" according to the DME.  But they only carry one brand.  Is that still "top of the line"?)  But she did agree to try some different masks.  (That is still coming.)  The "nugget" that I gleaned from this discussion is that not only can they track usage with the modem, but it's also like a mini sleep study.  They can tell if he's snoring or his mask is leaking or if he's he's having any apnea.  She told me that they can tell that Justin is still having OSA episodes while he sleeps!!!  Do you think that might be something I want to know???  I have been fretting about whether this is the right therapy because I just don't see the level of improvement I was hoping for from the machine.  Well, if he's still having apnea, that might be part of the problem!!

Okay, deep breath.  I was very polite on the phone, truly I was, but I am really, really glad I called.  That was the lightbulb I needed.  And, I even got a little encouragement:  It's very impressive that Justin wears his mask for 8-10 hours a night.  Every night.  That is much more than any other DME patients Justin's age.  That makes me feel slightly successful, even though my goal is not usage hours but improved daytime alertness.  We go back to the doctor in a couple of weeks and we can discuss what to do next given this new information.  For now, we'll keep doing what we're doing and try to figure out any other improvements we can make.