Monday, December 7, 2015

Week 120: Compressed

As I mentioned last week, we introduced nebulized hypertonic saline to Lemon's treatment regimen, in the hopes that it will help him kick whatever it is that we've been treating with antibiotics for the last month.  When we got our training last week, the respiratory therapist said that each treatment should take about 20 minutes.  Well, we ran it at home and it took over 30 minutes.  We've had this issue before, with our nebulized treatments taking much longer than they should.  In fact, over the summer I was convinced that there was something wrong with the compressor that drives the nebulizer, and I exchanged our unit for a new one under warranty.  That didn't make much difference, and we just sort of came to accept that the treatment we were doing took longer than it was supposed to. 

That was all well and good when it was just one small (2.5mL) treatment, once a day.  But, adding two additional treatments at 4mL each and we could see that all this nebulizing was going to dramatically increase our daily treatment time.  And we don't have more time in the day, as previously discussed.  I sent a message to our clinic explaining that our treatments were still taking too long, and asking for their suggestions.  The message I got back said that the respiratory therapist forgot that we were doing our treatments at home (where did she imagine we were doing them, I wonder?), and had quoted us the time it would take with the equipment that they have at the hospital.  Their proposed solution was to just run the nebulizer for 20 minutes each time, knowing that the full treatment wouldn't be delivered.  But, they reasoned, Lemon is small and probably 2/3 of the dose would be enough.

I didn't find this answer very satisfying.  First of all, Lemon won't always be small, and he will be doing nebulized treatments for the rest of his life.  So we need a solution that will work both now and when he's bigger.  Second, why not give him the full dose of each medication?  If we're going to go to all the trouble of doing the treatments, I feel like we should do them right.  Finally, the number of nebulized treatments that he has to do will only go up, so we need to solve this problem now, not later.  It seemed like our clinic didn't have the answer I was looking for, so I took to the internet, and consulted some sources of unknown veracity, like, you know, blogs.  And, I discovered that there is a whole category of compressors out there that for some reason our clinic never told us about, ones that can generate similar amounts of pressure to what they showed us at the hospital.  Yes, they may not be covered by insurance.  But we found one for $270 and thought it was worth a try, so we ordered it.  Happy Hannukah, Lemon!

Here's a demonstration of the difference between the compressor the clinic gave us and the one we bought.  In the video, the nebulizer connected to the new compressor (Mobileaire) is on the left, and the old (Innospire) on the right.  My assistant's arm can be seen in the lower right.  Look at the difference in output (mist) coming out of each one.  Night and day, right?  Now, we can get all our treatments done in about half the time as with the old compressor. 

While I'm so glad that we were able to track down this solution, and are fortunate enough to have the resources to just buy it out of pocket, it's raised some questions for me.  Why is it that our clinic never even mentioned this category of compressor to us as a possibility?  Why did I have to use a combination of Google and looking at some of my favorite CF blogs to track this down?  Why will insurance companies cover a nebulized medication that costs $1000+ per month, but balk at $270 for the machine that will allow you to actually deliver the treatment in a time short enough that it's compatible with the patient living a vaguely normal life?

Anyhow, enough on compressed air.  Lemon came off antibiotics yesterday, so we're just keeping our fingers crossed that he stays healthy for the next few days/weeks and that we can avoid a hospitalization.  Not that there's ever a good time for a hospitalization, but with Grandpa Dudley and Grandma Carol coming to visit for Christmas, and our much anticipated trip back to the east coast the following week, this would be a particularly bad time.  Of course, we were not so foolish as to purchase any non-refunable tickets or hotels, but here's hoping that just for once we'll be able to execute a trip as planned!

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