In an effort to combat these villains, we placed a humidifier in her room (use distilled water and a filter...worth every additional cent to keep that sticky film off of everything in your child's room), we elevated her bed with a foam wedge, and we used a fan to keep air circulating (now she has to have one...just like her G-Boss). The respiratory issues persisted.
Then we received her diagnosis of Rett Syndrome (one of complications caused by RS is respiratory infection and pneumonia) and I soon found some pretty amazing families and a whole new support group. One mother posted a picture of her young daughter using an airway clearance system called The Vest made by Hill-Rom. I wanted one! If this machine would help alleviate some of my restless nights (it doesn't really I still fret) hearing Rae's cough and bulldog breathing then we had to get one. Fortunately, Rae's doctors were in complete agreement and we started the process of ordering Rae her own system.
It took three & a half months!!!
(I know that doesn't sound very long, but apparently this process usually takes two or three weeks)
We sent a request into CareCentrix (our outsourced DME provider) and they said Hill Rom was out of network. Ok. Of course I could apply for financial assistance with a payment plan to cover what our insurance wouldn't. Uh...no thanks. Next!
We sent a request in for the Smartvest by Electromed. Sorry, they aren't in network either. Are you kidding me? I called CareCentrix and asked the customer service (haha...that is such a joke) rep which provider was "in network" and her reply, "I'm sorry I can't tell you that." (I am not kidding...she actually said that) There are only three companies that make airway clearance systems. We have already ruled out two so WHO is the third? "That's a different department and we have to have a prescription on file in order to tell you." Our doctors have already sent in two requests. "We have no record of a request being sent." So, you're telling me that reps from the other two companies AND our doctor's office are lying to me about sending in the requests? I believe you are mistaken and your people aren't notating her file appropriately. "Is there anything else I can assist you with?" (you're kidding right you haven't assisted me with anything) No thank you. *click* (yes, I hung up on her)
I started frantically searching the internet for the third provider (don't ask me why I ended up doing this when the doctor's knew who it was...it didn't even cross my mind to call them and ask...duh!). I finally came up with the name Respitech on a website for Cystic Fibrosis and they make the inCourage. Through the process of elimination this company HAD to be the provider that was contracted with CareCentrix. So, a third request was submitted and what do you know...it was approved!
Through this entire process the three companies that make these systems offered the best service to us. They called to give me status updates, offered financial assistance, and understood when I canceled our pending orders and searched for our in network provider. Our doctor's office was equally as amazing by following up with us throughout this three month process and were as relieved as I was when it was finally finished.
|Rae's wearing her new vest.|
Rae has her ups and down (see videos below) with her inCourage system and the new addition to our morning routine has taken some getting used to, but we're coping. It upsets her from time to time, but it is helping her by making her cough more productive and clearing fluids from her lungs reducing the risk of infection (she also drools a bit more). I only hope that one day she will better understand why she has to wear a vibrating vest. I too am still adjusting to her new therapy. The morning session is smooth sailing, but I'm still trying to work that second session into our afternoon. Fortunately, even with just one 30 minute session I can already hear a difference in her breathing and her lungs sound great! (according to her doctors) Now, if we could only get this ear infection thing under control.
Here is an example of a good therapy session...
Here is a less pleasant session...