Side note: I really want to reply to comments, but for some reason my account isn't letting me comment on anything, including my own blog. Silly blogger. I need to figure out what's up, so please don't think I'm ignoring you! I appreciate the comments, and am definitely reading them! :)
One thing that I look forward to every few months is the new parent support group for our clinic. We all have kids ranging from newborns to age 5, and I can't begin to say how awesome it is talking to other parents, IN PERSON, who totally get it and you can exchange tips with! I enjoy connecting with other CF patients and CF parents via the internet, but there's something about the face-to-face interactions that can make a difference. It just stinks that the disease carries the risk of cross-contamination from 1 patient to another (hence the 6 ft. rule), because if things were different we'd be able to let our kids play with each other and just talk with someone who knows exactly what they're going through.
Anyway, somehow we got on the topic of vest machines, and while I know there are still plenty of people out there using the SmartVest system, I discovered I was in the minority of the group because everyone else was using the inCourage system. Everyone had nothing but positive things to say about it, which is awesome! I have to admit I was a bit jealous that they were all using the system already, because I've been getting exasperated with Electromed. After some encouragement and more positive feedback, I decided to call and leave a message with our nurse coordinator to talk about switching.
Long story short, she said that there were management changes with Electromed at some point, and she wasn't overly happy with them anymore, either. This had to have happened at some point within the last 2 years, because when we got our current vest Electromed was the company the clinic definitely preferred. I told her my concerns, and she said we would definitely get the ball rolling to get a system from Respirtech! I really think this is going to be a good move for us for many reasons:
1. The last few times I've had to call Electromed to get parts for our SmartVest, they weren't nearly as friendly and helpful as they used to be, and the last time the rep got a little snippy with me over the phone because I must not have been describing our problem adequately enough. Sorry, but I don't know how else to describe what the generator was doing other than telling you it sounded like the air from the generator was hiccuping halfway through the treatment cycle, which it never did before.
2. The SmartVest just doesn't fit Judith properly. In 2 years, we've been in the same size vest, and at first I figured it was just because she was still so small and literally just met the height requirement to fit into the SmartVest. For a while, I've been observing that no matter what I try to do to adjust the fit, something just seemed off with the way it was inflating and fitting on her. Even getting the new bladder and outer shell didn't make a difference. SmartVests only come in 8 sizes, and after talking with one of the other moms on Saturday I felt better knowing we weren't the only ones who had problems with the fit. Respirtech, on the other hand, offers 23 size options for the inCourage system, and that alone made me feel more comfortable about petitioning to get a different unit!
3. The single hose on the SmartVest is certainly a perk, and always will be. However, when that hose gives you problems with the connection, it's frustrating. Lately, the hose either seems to get stuck in the connection point of the bladder, or it pops out relatively quickly depending on how Judith moves. If I don't seal it in hard enough, out it pops, and she gets mad because she can't put it back in herself. If I get a good seal, then it gets stuck and I have a heck of a time getting it out. User error? Possibly. But the other problem is Judith acts like an ox on her vest sometimes, and will pull that dang 23 lb generator along the floor to get to something she decides she wants, and that always ends in the hose popping out as well. Could we have the same problem with the inCourage? It's possible. The big attraction for me, however, is the locking hoses. I'll gladly give up the single hose mechanism for a double hose setup when they'll lock into place, and will be easy for her to pop into the vest herself.
4. The older model SmartVest generator is huge. And loud. And weighs a ton. Ok, not a literal ton, but it's 23 lbs. I know I've complained about this before, and I even expressed my concerns about that to the customer service rep when I called with our generator issue the last time. Since they had to send us a new generator (and we had to send the old one back so they could inspect it), I asked if we could get one of their newer model generators that is much lighter and quieter. I was told that nope, they refuse to send me a new model generator, and said that maybe with a new prescription from our doctor they could switch us. I then asked if they were planning to ever phase out the huge generators and transition everyone over, and she told me no.
The inCourage system's weight is probably going to be closer to the weight of the new SmartVest system, according to what people told me. So I'd guess somewhere around 16-17 lbs. That's going to be a huge difference for me. Obviously I'm still planning to get a cart to store everything on, but for transport purposes having a lighter machine is going to be easier on everyone, including my parents.
5. The other moms were telling me about the ease of programming the inCourage system, and I'm excited about that! This vest cycles through things itself instead of you having to program and start/stop things on your own, plus the way it inflates and shakes is supposed to clear the airways better. Judith's been doing so well respiratory-wise, and I want to keep that up while her lung involvement is minimal. If we can keep clearing things efficiently now, I can hope that we can delay or minimize some of the damage the disease causes as it progresses.
We have no idea what our insurances' response is going to be to this process. I can guarantee they're going to deny payment at least the first time. They always do, especially given the costs of the equipment. I was told that because our current system is about 2 years old, and we also switched our secondary since we had the SmartVest (and they didn't have to make any payments toward the purchase), we should have a little more leverage. Our nurse coordinator is going to do everything she can to help us, as is Respirtech. I felt really good after the initial phone call with Respirtech Monday afternoon, and feel very confident that this is a good decision for us. I'm hoping that the process doesn't take too long, and we can get the new system (and trained on it) quickly.
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