Today kicks off the halfway mark for the year. It's hard to believe I've been writing weekly for over six months now; I thought I would have run out of things to say. The insurance issues have helped to add material this year.
Speaking of insurance, I received an indirect update from them a few days ago. Since we were appealing their decision, coverage for nursing was first extended to May 18 and then to June 7. This has helped to ease the transition to the new system and allowed the 60 days to go another month since it hasn't been used. Another nurse has also been found to cover my nights and lives close by, so it looks like June will be nearly covered. That's the good news, now for the update.
I contacted both Iowa senators and my representative about this situation to see if their influence could help. One of them, Senator Grassley, sent me a letter containing a reply from Wellmark Blue Cross Blue Shield, my insurance, on their decision. Since I no longer use a ventilator, all nursing coverage will be stopped on June 7. All other items will remain to be covered as long as it is deemed necessary by Wellmark. Even if I did go back on the vent, they would only provide coverage while I recovered and worked back off of it. Also, the nursing home in Des Moines I was working with decided I was too much work and would not take me. I have started giving my information to a facility in Waterloo, but the last I heard from them the answer was "not yes, but not no yet."
So despite letters from various doctors showing that diaphragm pacing is the same as a traditional ventilator, known to have problems like a vent, and that if it malfunctions I can't breathe, the decision is unchanged. One of my caregivers asked if the place in Waterloo says no and the exception to policy doesn't continue, what am I supposed to do? The short answer, I don't know.
My parents would cover everything as long as they could, but that couldn't last long. We had several nights not covered in May and those got to be pretty exhausting, especially for my mom. It's possible that I could get about ten hours a day covered through Medicaid, I have a fellow quad friend that has this situation. When we would choose to use those hours, night or day, and what to do about the remaining fourteen hours is unclear. If that doesn't get approved, I'm not sure what's left. My father's employer is switching insurance companies since Wellmark is very expensive and isn't covering our needs, but we already know that company won't cover nursing as needed.
As time continues, the future looks unsure, but that has been the case since January and we have been taken care of through half the year already. God's timing is not our timing, but He does have a plan for us all.
Joel my heart goes out to you and your family. In Indiana we have waivers for different things and Greg is on two of them. One helps pay for nursing over and above medicare. Is this even an option for you. Also, have you thought about contacting the Oprah Winfrey or even some other celebrities they have all kinds of organizations set up to help people with different medical needs. It is worth looking into and the more publicity this gets the more likely the next person won't have to go through as much as you and your family are enduring.
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