So most of you know that Dovi sleeps on BiPap. For those who don't, BiPap stands for BiLateral Positive Airway Pressure. A BiPap machine forces air into your lungs. It's used for sleep apnea, which Dovi kind of has.
Ooh check out this snazzy drawing. I did not do it. Lifted it from the lovely internet. But that's exactly what Dovi looks like at night. Except he's cuter.
He also uses 1 liter of oxygen with the BiPap. Why all these lovely devices, you may ask? Well kids with FD have a very bad habit of going to sleep and not waking up. Yes. Not waking up. The leading cause of death (at least it seems to me over the last few years in FDland) is just that. Going to sleep and not waking up. Yes, FD sucks. Don't say I didn't tell you so. Big time sucks. So we do everything in our power to hedge our bets. We have BiPap. We have oxygen. We have a pulse ox right there. We have a blood pressure monitor. We have a nurse at night, both to give him his feeds and meds, and to make sure that he keeps his BiPap and oxygen on. Because he has a naughty habit of unhooking himself. (Case in point, 3 am last night when he took it off).
After that lovely, depressing paragraph, give you the somewhat entertaining source for the title of this post.
A few weeks ago, Dovi's BiPap was acting a little squirrly one night. So I called home health. THe respiratory therapist on call got us straightened out, but a few days later, we got a call from home health that they needed to "come and download the data" from the BiPap. Umm huh? Dovi's had the BiPap for I think two or three years. Hang on, I'll go find out...ok I looked it up in old posts. He got his BiPap in the summer of 2008. So 2 years. And never once have we heard from home health about "coming to download the data".
So we figured out a a time and the guy came today.
He downloaded data. And then he asked: "When is the last time you changed the filter?"
I said: "The BiPap has a filter?"
Then I told him that no one had ever come out to service us. He was horrified. And got a new filter. And showed me the old one. It could not have been healthy for Dovi to have that BLACK moldy filter in his BiPap. Vomit.
Then he asked me how often we change the BiPap mask. Umm never?
So he gave us a new, smaller one to try out. Dovi flatly refused. I need to call tomorrow to get another one of his big honking masks. Little weirdo. But then again you couldn't pay me to sleep on a BiPap and he's a good little trooper.
Most of the time.
But seriously. Two years? No service? How was I to know? Oops.
OK I find this funny. But in the rereading, it seems more pathetic and depressing than funny. Sorry.