Petrified

When Kyle was born we had no idea or concept what care would be involved in taking care of our guy. After 2 years of life he maxed out of our private health insurance. At the time I was scared and mortified....if he had already maxed out what would we do without insurance? Luckily our drs helped point out the way and I quickly got Kyle signed up with our state insurance. For 5 years I have had to have everything done perfectly or Kyle is in jeopardy of losing his insurance- twice a year I have to provide over 50 pages of documentation to show why Kyle needs his insurance and his nurses. When we went to Disney for Kyle's MAW trip we had a scheduled conference call with the state for his yearly phone review, 2 weeks before we left I called the state and told them where we would be. They said oh no problem we will reschedule you for the next week. Great, awesome right?! Yah not so much, so and so didn't put it in the computer and we came home to Kyle having no health insurance. It took 4 days for the state to realize their mistake and correct it, 4 days in our world with no insurance is beyond expensive. This is only one example of what happens in the works of state insurance. Even with all the headaches and chasing my tail I stayed so grateful...even with all the extras they don't cover I still kept thanking god every day for the help. We would honestly be homeless if we did not get this assistance. So 2 weeks ago I received a phone call from the State telling me that after reviewing Kyle's chart they wanted to offer us more nursing hours. They were shocked at the amount we used with the level of care needed to care for our guy. I'm not ashamed to admit that I sobbed on the phone. Kyle has not slept thru the night in 15 months. He is up multiple times a night requiring IV meds and other comforts. I don't complain about it but I'm exhausted. I'm fading. On top of that after 7 years I want to hold and comfort my baby, not hold him down and continue to always be doing painful things to him. So the thought of some additional help blew my mind. Five hours later I receive a second phone call saying...ooops. Wow, we made a mistake..because your husband has a job Kyle only qualifies for a program that has a cap on nursing hours, in fact because of this you will max out his nursing hours in five months. If you max out he will lose ALL of his insurance for the rest of his calendar year. Kyle qualifies for unlimited nursing hours but because M works we can't get that insurance (although if he quit or was fired our whole family would qualify). Shocked, worried, sad. The state had the nerve to say to me...the only thing that saved you last year was your son was extremely sick and in the hospital most of the year. We are being punished for keeping Kyle at home with us. We are making ourselves sick with exhaustion chasing our tails to keep our guy where he wants to be in cooperation and with full support of his palliative care drs and we are being punished for that. Punished because M works his tail off. They tell us there is nothing we can do because it's a federally mandated program. We have no idea what the next steps are. How can a child qualify for one thing and be punished because his parents are trying to take great care of him. XO k