Thursday, May 28, 2009

A little good news

Ok, we'll start with the bad news first. Still no word from Boston, I'm losing my mind. They haven't even recieved his info yet because they haven't sent me the form to fill out. Come on people, this kid is getting puffier by the day, pretty soon he's going to go into full blown heart failure. Sheesh

Anyway, my case manager from my insurance company called to ask if I had heard anything yet. She will be the one getting everything pre-approved through insurance. She said the good thing is we are not her first kid going to Boston, she just finished paperwork for another kid, so she has all the wrinkles out. I guess because of the loss of our great cardiothoracic surgeon (who was head of the department) a lot of people are going out of state. I think if he'd have been here when they met about Jax that he would have done the surgery. He does all the difficult kids, so now there is no one to do the difficult cases. Anyway, she said that she had no problem getting this kid approved to go and just pay the same as if he were having it here. Which for us means nothing, because we met our 1,000 out of pocket max in January so everythings covered 100% wahoo...

And another thing, she asked why Jax isn't on Medicaid as a secondary insurance. He did have it but I canceled it after our settlement because we actually had to pay them back what they paid in from our settlement. So I figured he couldn't get it anymore. Well he can, down syndrome is an automatic qualifier for Medicaid. You know what that means? When you go out of state for treatment, medicaid will give you some money for transportation and even a food allowance. That will help so much with the cost of going out there. Boston is on the other side of the country from us, a long, expensive place to go.

So I'm filling out the paperwork to get him back on medicaid. Now we just need to light the fire under Bostons butt to get things moving.


Melissa said...

GRRRRRRRRRRRRR Boston, what is the matter with UUUUUU Our Jax needs you over here:0) Ok, so I'm done with the yellin/cryin..LOL But still, this is REDICULOUS!!! I would so do this too@!
CONGRATS on the Medicaid/that's awesome!!
{{hugs to ya'll!}}

Stephanie said...

That's awesome about the medicaid. V's had medicaid for the last three years. It's been a big help since I had to leave my job to care for him. He gets SSI too. DS is an automatic qualifier for SSI as well. Even if Jax doesn't qualify for financial benefits from SSI, he still automatically gets medicaid through disability. That's how it works here anyway.
It's really nice to hear something positive finally, huh?

blairspage said...

That is AWESOME that he will qualify for it. Blair has medicare, but the ONLY reason she has it is because of her Omphalocele and because she was in the hospital more than 30 days when she was born. Baylee, on the other hand, does NOT qualify for it. So, any out of pocket travel/food will come out of my pocket. Oh, and our out-of-pocket for insurance this year is hanging around $5,000... that doesn't include scripts.... FREAKING ridiculous.

Anyway... just keep on them! They will keep moving as long as you push them!

Big Hugs - I will be praying for you!!!!!!


Junior said...

It is great that Jax qualifies for medicaid.
We will be praying that Boston will get moving quickly.
Love the pics, Jax is so cute.

ch said...

Wow, I wish we could get someone in Kansas to understand that guaranteed qualifier...apparently in Kansas Jesus himself needs to show up and complete the necessary paperwork. SO glad for some GOOD news for a change of pace! xoxoxox

Anonymous said...

Hey Lacey - When filling out your paperwork for the Medicaid, ask about the Katy Beckett waiver. Ds is not a qualifier, but Jax has enough other stuff that is! This is a program (Fed) that will ensure he gets the medical card until age 18/21 and IS NOT dependent on your household income! You can win the lottery and still qualify! There is also nursing help involved. Therapy and equipment is also covered. E-mail me if you have ?????

You are much more patient than I am about the hospital thing. I would be screaming at somebody by this point. Will keep you all in our prayers that SOMEBODY gets off their duff and gets things moving.

Jax is looking pretty good in your pics. Hugs to all.

Steph and Christopher OurLittleMan

Tausha said...

Man, Sam doesn't qualify for anything unless we filled out the papers wrong? Boston needs to get their rear's in gear. Sorry you are having to wait and wait. You are in our prayers that Boston will call you sooner then later.

Denise said... will be right at home. Do you think that it is a real possibility that you guys might move??? I am assuming it would be more in the North of LA area as I believe that Heather said that is where your family is.

Anderson Family said...

I wish Boston would hurry up so you knew what was going on. That is awesome that your caseworker has worked with Boston and knows the hoops now - that will help a lot I am sure.

And the whole Medicaid/SSI thing I am so confused on. Carter qualified for his initial hospital stay but then we found out we would have to give up our AFLAC money if Medicaid paid the bill - so we turned it down and kept our AFLAC money. Then we were told we wouldn't qualify because of income - even though he is considered disabled. If you get any information we would love to see what you find out - I would like Medicaid to be a secondary insurance but I didn't think it would work just based on what we have been told. Why do government programs have to have so many loopholes?

And yeah I totally agree -$600,000 should qualify for a free medical records report - I think it is ridiculous to have to pay for it. I am just curious to find out what they say about Carter.

Melissa said...

That is good news about medicade. I am also sad that so many patients are needing to go out of state for their surgeries now. Our great Dr. will be missed. Good luck as you wait to hear from Boston. I wish they would hurry up already!
Melissa - IHH

Heather said...

Why the heck can't things be easier?Why must we work SO hard when we are trying to keep our children alive,first and foremost.Hoping you hear soon and get the "wrinkles" out.Remember too,people come from all over to Dr.Vaughn Starnes her in LA.All over the world infact.Let me know if you want me to do some leg work.Don't mean to confuse the plan but wanted to through that out.Zoey has the waiver.Just qualified and it went retro to October.Wish someone had told us about it during the NICU days.Maybe we wouldn't have lost our home and savings!!!Kiss the little guy for me please.

stephanie said...

Lacey great news about the medicaid, but what is the problem with Boston? You know one click of a fax machine and hello you have the form, or e-mail it, what the heck are they waiting for? Are they sending it by regular mail, that could take a long time.My daughter is in California and it takes over a week to get things(I know you're in Utah, but it's still far). They do know this is a time sensitive matter!Can your doctor or anyone be a little obnoxious and get there butts moving... the squeeky wheel gets the oil...This is giving me anxiety I can only imagine what your going through. Sending prayers your way.

jjpsmommy07 said...

That's great that he can get back on Medicaid. I hope Boston hurries up and contacts you so they can help Jax out. As always he remains in our prayers.

The VW's said...

GREAT NEWS!!! I hope that they will get you back on Medicaid soon! That will be a huge relief, I bet!

I hope and pray that they will get moving fast in Boston! I bet you are going crazy with anxiousness!

Has anyone talked to you about going to University of Michigan hospital? The children's hospital is called Mott. They have AWESOME cardiac surgeons there as well. This is where Gavin had his heart surgeries. (This is not where he had the stroke either!)

Check out Dr. Bove and Dr. Jennifer Heirsh. (I hope that I am spelling her last name right.) Anyway, they are world known and people come from all over to have surgeries done by them!)

This is a selfish plea....if you came to Michigan, then I could meet you and Mr. Jax! :) Plus, I could help you out! I spent several months there with Gavin and felt very secure with the care that they gave to him!

I'll be praying for all of this! Hang in there! HUGS!!!

The VW's said...

I did spell her name wrong! It is spelled: Hirsch.

Go to C.S. Mott Hospital and you can learn more.

Dr. Bove was the one that did Gavin's surgery, although Dr. Hirsch did do one of them. Dr. Bove actually developed cardiac surgeries! He is brilliant and Dr. Hirsch is his protege. I have been reading about a liile girl with DS on carepages. She had very similiar issues as Gavin and they didn't think that she would survive, but Dr. Jennifer Hirsch did her surgery and the little girl is doing AWESOME now! Her mom calls Dr. Hirsch a hero!

Go to and enter care page name Bernie and hopefully it will get you to their site. If it doesn't, I'll let you know.

Even if you aren't interested in pursuing this hospital or doctors, you may like to read about Bernie on her carepage. She is adorable!!!

The VW's said...

O.K., I'm back again! If you want to get to Bernie's carepage then you need to go to and then when the site comes up you have to enter BernieCarsonSmith in the search box.

Happy reading! She is so precious...I WANT her!!! You'll see why if you go to their site!

Sorry for bugging you so much! :) Hope you have a great day!

Michelle said...

Sorry things are taking way to long, but glad you at least got some good news about Medicaid...that has helped us a ton or I fear we would be finacially destroyed! I'll keep the prayers going for your sweet family!
And yes, we are considering a Cali move. Preslie was off O2 the WHOLE time we were there and now is back on AGAIN since we've been home. This altitude is REALLY not good for her. We meet with her cardiologist Tuesday and I will ask her what she thinks. But Kurt is looking into jobs, CoastGuard and we've looked at realestate, so now we just see how the chips fall!! Keep your fingers crossed we can ALL make it out there!

Denise said...

Temecula is about an hour southeast of Anaheim and an hour north of San Diego. We are right off the 15 freeway. If your husband gets a job in would be an hour drive from here. (Well depending on traffic :) Almost everyone that lives here commutes to Orange County (Anaheim area) or San Diego so everyone drives but it is an AWESOME place to live!!! But you can't really beat living near family!!! It would just be fun to have you guys somewhere in Socal.

Emily said...

I am so glad Medicaid is going to work for you again! I am like Tausha... unless we messed up the paperwork... we don't qualify. It would sure be nice.
Good luck with Boston... whenever they decide to get their rear in gear!

Denise said...

You should just email me directly so we have each other's emails and don't have to go to the comments each time. Yes, housing is cheaper out here because we are a little ways out from the main cities but it seriously is a wonderful place to live. We are probably about 40 minutes from the ocean here. Yes it does get hot.....but not Vegas hot. But it is definitely hotter than living near the coast. SERIOUSLY use me for advice on places to live if you end up south of LA because I have lived all around.

The VW's said...

His name is Edward Bove.

Michelle said...

Will be praying for you.

Mama Mason-Mann said...

Sorry to hear about Boston! ARGH! They're a little full of themselves. :0 Anyway, awesome about the Medicaid. I'm thrilled for you! Big hugs. Good luck!

ParkerMama said...

Ds is an automatic qualifer for Medicaid? We didn't qualify until Parker was traced!

But I'm Sooooooo thrilled that Jax qualifies. We've been praying for you guys and for there to be some great solutions coming your way!

Can you get one of Jaxon's local docs to call Boston and hurry the process up.

Sending you hugs.

It never fails to amaze me how you can fall in love with a family you have never met before. :D

Conrad, Megan and Our Precious Keaton said...

Hi Lacey - Thats great news on the Medicaid! And im sure these small graces will go a long way!
Jax is sooo cute!!!
I will say an extra prayer that Boston gets back to you asap - I agree with Melissa "Boston, whats the matter with U, Our Jax needs you over here"...
Will email you over the weekend re: package... got a good idea... Love megan and keaton

Denise said... I went on but where do you go from there to find them....there are a million sites.

Alyson said...

I think that's GREAT NEWS!!!!

I'm sorry that this is such a slow going process!!! I can't stand it when it seems like people are taking their sweet old time..... TIME THAT you and JAX do NOT really have!!!...... It's the complete LACK of the SENSE OF URGENCY that drives me crazy.....

Sadly, I know I feel sometimes like my paperwork is just off to the side, like it's no big deal....Eh....They'll get to it soon enough......GRRRRRR

Let's LIGHT THAT FIRE under their buns!!!! :0)

sturpin said...

Sorry things are taking so long. It's maddening to watch your child knowing that they can fix it!
DS is not an automatic qualifier here in Texas - it's still income dependent. There are back doors, medicaid waiver programs, that we will have to use. With the trach, we finally qualify. Crazy!