A few days after Gavin was in the ER, we had an appointment scheduled to see our pulmonologist (which I had booked a couple weeks prior) to get a referral for a cough assist machine vest which is vital for the health of Gavin’s respiratory system. Though the equipment costs a whooping $15,000, it will do an effective job in keeping his lungs clear and will prevent any infections and the possibility of pneumonia. The devastating truth is that children with Tay Sachs disease or any neuro degenerating disease will eventually lose their ability to cough any gunk out of their body so this equipment can make a world of difference. Sadly, our pulmonologist, out of health care protocol, said that it may be hard to get an authorization to purchase this equipment for Gavin as he hasn’t had any frequent pneumonia, respiratory infections or ER visits so it may be hard to convince Kaiser Permanente to purchase this for Gavin. Wow, Ferd and I could not believe what we were hearing. So pretty much, in a nutshell, Gavin had to have had X amount of pneumonias, ER visits etc…. until finally, the insurance company will say, “ok, I guess it’s time for Gavin to have the equipment he needs.” Whatever happened to prevention or the notion of, if you are sick and you need help, you’ll get what you need-period!? I guess there is some truth to Michael Moore’s documentary, “Sicko.” Our pulmonologist did (not surprisingly) recommend increasing Gavin’s current medication and introducing 2 other drugs that may help with his secretions and congestions;- of course, it’s the cheaper option right? But Ferd and I are going to fight to get the equipment that Gavin needs, I mean if we can avoid giving Gavin more drugs, then so be it.

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