Tuesday, January 5, 2010

January means deductibles and out of pocket maxes :(

Jaxson getting in a serious workout!!

I'm giving the blog a makeover so things might look a little screwy for a while. I love my Mickey background, but we've had it a year and it will be nice to lighten it up a little. The black is just too dark.

I've been in a great mood since New Years, excited to start some new things and hoping for a great year. Then I realized that with the new year means starting over with deductibles and reaching our out of pocket.

Ugh crap.....

I hate this time of year. Yeah Jax hits his out of pocket in Febuary, but I will be getting tons of different bills from a million different places until that happens. And spending a lot more money. We joke that if we didn't have Jax our mailman would be bored. Every day we get at least 2 things from our insurance for Jax (a waste of paper in my opinion, to tell me what was charged but that I don't need to pay it) I really shouldn't complain, we are lucky. We have great insurance, and they cover just about anything. Plus our lifetime max is 2.5 million instead of the typical 1 million. Meaning we are saved from losing insurance for at least a little while longer. He passed the 1 million mark last year. So now the medical bill paying begins again!

Double Ugh!!

I also talked to our resource nurse, who knows everything available to special needs kids here in Utah, and she had no great plan to continue nursing care. A lot of people have mentioned the Katie Beckert waiver, but no one in Utah knows what that is, so I don't think Utah has it. Like I said before he is on a waiting list for a waiver for technology dependant kids. Meaning they have to be trached or on c-pap, but it will be about a year before we get it. Which means the end of this month we lose our nursing care! I can appeal it with my insurance, but I won't get coverage while appealing. I can talk to the nursing company and work out a deal to pay them less, but it would still be out of my pocket and expensive. Now I know I won't die if I don't have nursing care, I've done it for 4 years already. But a trach is a lot more work. I haven't had a full nights sleep since the trach. And now that i'm getting a night nurse, I will lose it at the end of the month!

Triple Ugh!!


Cammie Heflin said...

I hope you have the waiver. In Missouri kids with DS qualify for supplemental medicaid on top of their insurance. It is what pays for Addy's nursing care. She gets the medicaid since she is a special needs adoption, but even if she wasn't she would have it because of the waiver.

ABandCsMom said...

Boy, I sure hope this gets worked out for you guys. People just do not understand unless they've walked a mile in the shoes of a parent with a special needs child. Michigan has something very similar to what Cammie Heflin spoke of. That's what Carly has. Without it, we would surely have been sunk way back when she had her first heart surgery at the age of 3mo., which cost over $268,000.00. We've past the $1 million dollar mark a few years ago. I sure hope someone can figure something out for you guys. Soon!

Mama Mason-Mann said...

Oh Lacey, insurance companies suck. I mean, they save us in one respect, but then leave us hanging in so many ways and so many times. Good luck trying to find some nursing coverage. You deserve it!

By the way, I LOVE his room and he looks ADORABLE in his stander! :)

Junior said...

Jax looks so cute in his stander. Good luck with the insurance and nursing situation. Wow they should have some kind of medicaid waiver for the nursing.

Stephanie said...

Lacey - The katey beckett waiver IS the technology dependent kids waiver. It is a Federal waiver and all states must carry it (although they may call it something different and/or administer it a little different). It is also called Title 14. You might ask if you can be moved up the list as one of the points of the waiver is that the nursing services are required to keep him safe in your home or he would have to be in a nursing home. It is cheaper to pay a nurse, than ICU bills for the same period of time. Talk to your doc and see if they can put pressure on the state.

On another note - Jaxson and Christopher have the same color in their rooms! How funny is that? EXACTLY the same. Jaxson is looking great! hope to get Christopher up in to his stander soon. :)

Steph and Christopher

Emily said...

Insurance is no fun. I'm not a big fan of the January start myself, medically at least!

sturpin said...

Hating January myself - my kids could go to the doctor last week. This week they get over the counter meds. As my husband says, we are sitting around waiting for Bella to get to her max - shouldn't take long!

OK, we have to figure out the nursing. You'll go crazy and get sick.

Kristin said...

I was just thinking the same thing on the new year deductibles & out of pocket max. Good luck on the nursing stuff.

Becky said...

Move to NH. We pay NOTHING out of pocket for Ben between our insurance and his medicaid. It's a great state to live in with a handicapped child. :)

Kim Rees said...

Oh man Lacey! I know what you mean about those insurance deductibles. It's a tough reality! I will pray that everything works out and that you find a way to keep the night time nurse so you can get some rest. Feeling your pain (((HUGS))).

Greg and Heidi said...

Hang in there. I hate the insurance fight! I hope you can take some time to relax and take care of yourself between 24 hour Jaxson care (all worth it of course) and battling insurance. Love the kisses picture and love the room. The medical equipment looks minimal. . . You must be organized and good at hiding!

Stevenson Family said...

Man... don't you love the insurance companies. You are one strong woman. Keep up the fight!! Jax looks great!

Alicia said...

I agree with Stephanie. Find a different person to talk to and fight hard until you get the waiver.

The social worker from our hospital kind of screwed us over at discharge. First, the discharge coordinator told us we could not take Marissa home without nursing care. Our insurance would not cover it and we did not qualify for Medicaid. The social worker put her on the waiver wait list but failed to inform us that we could be expedited up to the front of the list because she was depending on funding for nursing to come home.

It all worked out in the end. We were able to take her home b/c we convinced the doctors that we had qualified family members and friends that came into the NICU and trained how to take care of her, so they let her go home without nursing. We waited for the waiver until last fall (2008) when we finally reached the top spot on the list. That was when Marissa was about 19 months old.

The hospital wanted nursing primarily at night so we could get some rest. Luckily for us, Marissa was a great sleeper from the get go and only really required extra suctioning when she was sick. I can't imagine how much sleep you are losing out on with Jaxson having a trach now. I would make a plea to your state that you require nursing and funding for nursing so that you can provide Jaxson with the best quality care and be able to keep him at home.

Evie's Story said...

Oh Lacey....I just hate that you have to deal with that mess on top of all the energy it takes just to care for your special little guy.

Hey...wanted to tell you about this foundation that contacted us. They provide vacations FREE OF CHARGE to families with special needs babies. You have to be referred by a physician, but you might look at their application process...you would certainly be deserving!!

Hugs to you friend!

The VW's said...

Great job in your stander Jax! Gavin has been hanging out in his a lot lately too!

Sorry about the nursing! I hope and pray that something can be figured out! And, meeting deductibles is never fun! :(

Love, Hugs and Prayers!!!

Heather said...

You do have that darn waiver ... it just must be called something different.Start harassing someone,anyone that can help you get to the bottom of it.You need that nursing care!January is the pits ... 2,500,2 person deductible to meet here and that is a tough 5 grand.Our prescription plan is not great either.Thank goodness Zoey has the waiver supplement and another state program or we would be in big trouble.Right back where we were after NICU days and that,that would be no fun!

He looks darling in his stander.Such a big guy.

*Good talking to you on the phone.Forwarded Tera you number too.Hope it was alright.Just in case she runs into GJ tube issues again.

Michelle said...

He looks so big in his stander!

I'm so sorry you'll be losing the nursing care; I hope things get straightened/figured out before the end of the month so you won't lose it!

ParkerMama said...

In Utah it is the Travis C. Waiver. I think getting Jax on the vent will help move you up on the waiver as well.

Good luck!