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The Not So Quiet, Unsung Heroes

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From Kate: 

Let’s start with this. 🙂 Take a quick gander at all of the pictures below. Know that for all SMA families, they pretty much have most, if not all items. 🙂 Some are life saving devices, some help ensure safety while transporting, some ensure positional stability, some all for effective ways to communicate, etc. I titled this post “The Not So Quiet, Unsung Heroes” for a reason. For many of these items, they ensure safety and health for our kids, but man do they have annoying alarms. 🙂  “Beeps”, “Ping”, “Buzz”, and “Beep, Boop, Bong”. 

Many of these devices, they are used every minute of every day to several times a day, in many repetitions. Many of these devices have literally saved and hopefully will continue to save Getty’s life. 

Many of these devices have to have back-ups. If for instance, Cough Assist, Trilogy BiPAP, Suction, Joey Food Pump, or Humidifier fail (and they do), a frantic call to the medical equipment company for a “switch out”. In my opinion they take their “sweet time”. In the meantime, one must pull out the back-up devices in an instant. 

OOP Out of Pocket is an immediate slap in the face. Often times, OOP expenses are do to insurance companies denying a claim due to “Not Medically Necessary”. The cost adds up and your savings account decreases. 

In the SMA Community, I learned one amazing skill from other fellow families, I call it “The Hustle”. The definition of a hustle is as follows: “to obtain by forceful action or persuasion.” Oh man, I am getting really good at this. Not always successful, but continue to push. LOL! Below there are many items that range in cost, but are vital to our child’s health, well-being, education, socialization, and transportation. The Hustle comes in many forms, but the essence of it means that you don’t stop at the word, “no”.

While I whole heartening agree that there is something very sickening for any primary insurance to suggest that, for instance, a pulse oximeter is not covered by insurance because it is not considered “medically necessary”. I think it is equally sickening that a family would have to compromise their family income to buy a life saving device. For educational purposes, the Pulse Oximeter’s responsibility is to monitor Getty’s O2 and HR every single second of every single day. Getty is never without monitoring. O2 levels tell us that she may be getting sick, has some secretions in her throat that may be compromising her, constipation, etc. HR tells us many of the same things, because often O2 and HR work in tandem to let parents know “something may be brewing”. Many times, our pulse oximeter has alerted us that Getty’s health was in immediate danger. In a moment such as this, we then rely on the Suction Machine and Cough Assist to get her “numbers” back up. I hope you can now see how vital this device is for our ability to monitor her. Without a device like this, we would have to rely solely on her sounds and color to let us know how she is doing. Can you imagine? I literally would be staring at my daughter’s face with a suction catheter in hand 24 hours a day/ 7 days a week. She is already so over my constant monitoring, she would be so annoyed. 🙂 So we pay OOP for this device. This device is not cheap. 

So where does “the Hustle” come in? Good question. The Hustle has been for everything else. 🙂 So here’s how it goes. Primary insurance denies a device or piece of equipment and the moment you receive denial in the mail you appeal. Always appeal! Many times an appeal needs to be accompanied by a LMN (Letter of Medical Necessity). This letter becomes the argument for insurance to perhaps consider the item to be medically necessary. Facts, documentation from doctors, journal discovery, data, etc. Sometimes it works and sometimes it doesn’t. Let’s say it doesn’t, keep hustling. State, county, city, and non-profit  resources may then be able to help. Denial, Appeal, LMN, are all vital for these resources to “kick in”. Fingers crossed a resource will and can help. 

For us, we have hustled for:

Stander

Suction Machine

Tobii Eyegaze

Cough Assist

Bingo Hoggi Stroller

Permobil C300

Bathchair

Trilogy BiPAP

Joey Food Pump

*ALL Vital to Getty’s health, well-being, education, socialization, and transportation. SMA families keep hustling. Just keep hustling. 

If you have any questions about any of the items below, please ask, I would be more than happy to explain. You know the irony of the pictures below is that we literally don’t see these items in the house. LOL! They have all kind of blended into our environment, and we forget they are even there. Until they alarm, “BING”, “PEEP”, “BONG”, “BEEP, BOOP, BONG!” 

 

 

 

 

 

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