Losing Sleep

It's 3:40 am and I'm awake and pissed. I've been up off and on for the past few hours with Stephen, which is typical, but now I can't go back to sleep because my mind is on overdrive. We received a letter this weekend from the State Department of Health Services that we were officially denied the Med Tech waiver for Stephen. Meaning that we now won't get the private duty nursing that we were told we qualified for and would receive. We were denied because the State determined that my private health insurance will pay for (part of) private duty nursing, so Medicaid will not. Which makes sense. I can't fault them for that. But just figuring this out now so late in the game is why I'm so frustrated.

Months ago when I started the paperwork process, the NICU staff determined my insurance would only pay for nursing visits, not private duty nursing, so that's why we started this long process of getting the waiver. And when I say long, I mean I completed the application back in February. Then we went on this emotional roller coaster ride of are we going to get help or aren't we. Because the process takes so long the only thing I got when we came home was the nursing visits, paid for by my health insurance; but they were pretty much useless to us. There isn't anything a nurse can really do for Stephen in the 15 minutes they were here. Then when I found out we were going to get nursing care, I labored over whether not I wanted someone in my house overnight or during the day or even at all (since I've been doing everything on my own anyway), but if I didn't use it, Stephen would lose his Medicaid. So we determined I should definitely use it so that I could at least get a break here and there and it would allow me to maybe go back to work part time. Well......long story short everyone involved from the hospital to my benefits coordinator at work was wrong; my insurance does provide it and now we have nothing. (if I take the nursing from my insurance though, we are still responsible for paying a portion the bill)

I'm pissed for a slew of reasons. I won't go into them all. But I'm really mad that we could have had nursing help from the day Stephen came home, when I really needed it. And now without the nursing care, I'm going to lose my job. Which means I'll lose my health insurance and we will have to switch to Bill's health plan. And what if his Plan doesn't pay for private duty nursing? Then we are back to square one totally and I imagine I'll have lost my window of opportunity to get his Med Tech waiver.

Why do they make this so difficult?!?! And if my insurance company had given me a case manager to begin with, this all probably wouldn't have happened. But of course, we were denied that too.

I really could just scream and cry I'm so frustrated. And to make matters worse, the woman who is our case manager at the State who determined all of this is on vacation until next week and I only have until then to figure out if we are going to try to appeal or apply for a different waiver. Seriously, when am I ever going to get a freakin' break!?!?! It's never ending.