Traveling for medical care?

[Sam_2.0]

DH and I thought we would be able to use the local children's hospital to try & treat Aubree when she's born (hypoplastic left heart, complete heart block, and situs inversus). But the more we look into it the more I just don't know about that plan. Our hospital is #41 on the list. #1 is Boston - quite a ways from KC. Although, given her complex situation, we really could end up just about anywhere by the time we find someone with the experience to handle it. Saint Louis also gets great reviews and would be much closer to home.

We are going to hit our insurance OOP max here in another month. The last specialist billed $2,000 just for the office visit! I am assuming that our insurance should cover the rest and we would only have to cover travel costs? We have an HDHP plan and I've never come anywhere close to hitting the max OOP so I really don't know how things work after that.

We also have to take into account the toll this takes on our family & our older daughter, as well as time away from work. This is all so overwhelming I just don't know where to start.

Has anyone had to make the decision to travel cross-country for medical care?

[Queen of Interesting Nuts]

Hi Sam, no I haven't but I think you will do whatever is necessary for Aubree. So I hear the chromosome issue was ruled out. What exactly is going on right now. Is it a heart issue?

A family friend is very familiar with HLHS. If needs be I can connect you.

[swamp]

My parents have traveled to FL from NY for care.    They felt it was worth it.

Does your insurance have a maximum amount of coverage?  

[Sam_2.0]

The first two stages of amnio results are in and there are no obvious issues. Just waiting on the micro-array results before we can get the referral to the cardiologist to get more details, since they said the cardiologist is going to ask for the test results anyway and won't really proceed without them. So right now it's just looking like a random fluke.

The hospital here can treat HLHS and has good success rates with their Norwood procedures. What gets tricky are the two other things. Mainly the heart block since she could go into heart failure at any time without a pacemaker. I don't think she's even a candidate for prenatal interventions due to the complex issues.

[Sam_2.0]

No, no maximum coverage in or out of network. Wasn't that part of the ACA?

[sheilaincali]

My sister had to do all of her doctoring at Children's in Minneapolis (2 hours from our town with no traffic) when she was pregnant with my niece and nephew.  Niece has a permanent shunt in her head to drain excess fluid- had surgery when she was one week old.  Nephew was monitored for the same thing his sister had and was born with a hole in his heart.
Now that they moved to Iowa they still doctor at Children's- it's now a 6+ hour drive for them that they fortunately only have to do twice a year.

I'm biased since all of our hospitals are tied in with Mayo Health Systems so it's very common for someone to be referred to a specialist at Mayo or Abbott.  Most hospitals of that calibur are used to patients traveling in.  Some have attached or close lodging and others have contracts with hospitals that are close to the hospital.  In my experice they really try to make that portion of the hospital visit run as smoothly as possible.

I think if you find a doctor that you are comfortable with and is able to help than traveling is a good move. 

[NomoreDramaQ1015]

Mich traveled for her surgery I believe.  She lives in Boston but is currently living with TD in California (I think).  You can PM her and ask about it.

Our hospital has people traveling from all over the world.  There is a Ronald McDonald house near campus and there is some on-campus housing for patient family members.

I'd try contacting The Ronald McDonald house and explain what you're thinking.  They might have a chapter near that hospital if they are #1 for for what you're looking for.

[NancysSummerSip]

Sam, I'm not sure if this will help:

www.vitalone.org/category/air-medical-transport/

This is an air transport service designed for anyone who is medically needy, including infants. Angel Flight is better known, but patients must be ambulatory, which rules out transporting infants on their flights. VitalOne is a service primarily used by Orthodox and observant Jews (the company is based in Monsey, NY, an orthodox enclave), but they also coordinate with other air ambulance services. They rely heavily on donations to survive, so they may be an affordable option for travel, if getting somewhere cross-country is an issue.

[justme]

Haven't traveled for medical care, but once you hit your OOP max everything else is covered 100% - as long as your insurance covers that procedure/whatever. I have In/out of network and they have two different deductibles and OOP max, if you have In/Out of network the main thing is to stay in your network (unless you have just one deductible/OOP max, but I doubt that if you have In/Out network). I hit my OOP max back in March, and last year as well, once I hit it I didn't see one bill.

Ok, I guess I did travel when I went to a Mayo clinic - but that was only a 2 hour drive and the only reason I stayed the night when I went was because my Aunt lives there. Otherwise I would have just driven back the same day. Oh, and the Mayo clinic had hotels that were connected to their facilities which I'm sure is a nice feature if you're going to be there a while. Other hospitals might have that too?

[muttleynfelix]

but once you hit your OOP max everything else is covered 100% - as long as your insurance covers that procedure/whatever. I have In/out of network and they have two different deductibles and OOP max, if you have In/Out of network the main thing is to stay in your network (unless you have just one deductible/OOP max, but I doubt that if you have In/Out network). I hit my OOP max back in March, and last year as well, once I hit it I didn't see one bill.

The problem comes without of network stuff or "unapproved stuff". Especially during surgeries. DH got everything preapproved for his back and then we got a denial that this one provider was out of network and they denied whatever he did! I have no idea what his roll was and it wasn't like we had a choice while he was in the hospital!  We haven't received the actual bill and we were going to appeal the denials. But it is hard to fight when you don't have a clue what you are fighting.

[Sam_2.0]

We have the same deductible for in/out network. I think the only difference is how much I have to pay when seeing certain doctors before I have met my deductible. In-network gets a discount while the others don't. Or maybe I am just completely confused...totally possible.

[Deleted]

We have an awesome children's hospital about an hour away. It's not unusual for people to travel to it. 

Talk to the hospital. They will have Ronald McDonald houses and perhaps other networks in place for our of town people. They should also know how the insurance works. 

[Sam_2.0]

Crap, I hope OHS is covered since it's medically necessary for her to live. She would die within days without it. And no way can we afford to pay several hundreds of thousands of dollars.

[Queen of Interesting Nuts]

My friends baby had the norwood treatment, he documented it very well.

[NomoreDramaQ1015]

To take a leaf out of Paul's book (heaven help me) these are the situations bankruptcy is for. 

Take it one step at a time and do what you gotta do later.

[swamp]

May 14, 2013 11:20:18 GMT -5 NomoreDramaQ1015 said:

To take a leaf out of Paul's book (heaven help me) these are the situations bankruptcy is for. 

[img]http://syonidv.hodginsmedia.com/vsmileys/yeahthat.gif[/img]

[Queen of Interesting Nuts]

Yeah that I totally agree with, take it one day at a time.

[muttleynfelix]

Take it one step at a time and do what you gotta do later.

Yeah, don't worry too much about money at this point in time. It is what it is. 

[mollyanna58]

Have you called your insurance company and discussed what your policy covers in this situation?


Prayers and good wishes for your family

[busymom]

First of all, <HUGS> for what you're dealing with. 


Around here, the Mayo Clinic in Rochester, MN is "the place" to go.  However, a lot of the major cities have very good Children's Hospitals.  Don't be afraid of getting 2nd & 3rd opinions on the best course of action to take.


And I agree that this is one time NOT to think about the money.  Just take care of your child, & worry about the rest later.  (But you already know that.) 

[cael]

Sam, if you end up in Boston, let me know, I could try to hunt down some resources for you

[raeoflyte]

I know our children's hospital doesn't turn anyone away for ability to pay.

I wouldn't hesitate to travel if you feel another hospital has better care.

Hugs!

[Clever Username]

You remember I work in bankruptcy, right?
There's nothing wrong or immoral about bankruptcy planning.
Talk to me.

We'll just take a quick look behind the curtain.
.... so if this lead to a metric shitton of medical bills, what would bk look like?
What that you'll get an idea of what you should/shouldn't do moving forward.
Like retirement..... don't touch it.  You can file BK with $2MM in your 401k and no one will do anything but congratulate you on your wise planning.

But though medical bills lead many there, if you have a good HDHP insurance, you quite likely will not need to.
Most are set up simply that once your out of pocket max is reached, they pay for everything.

It will probably be very good to read carefully into uninsured things like the travel itself or other exclusions.

[Wisconsin Beth]

May 14, 2013 11:17:46 GMT -5 Sam_2.0 said:

Crap, I hope OHS is covered since it's medically necessary for her to live. She would die within days without it. And no way can we afford to pay several hundreds of thousands of dollars.

No, you talk to the legal dept. at the hospital.  If you were using our Children's Hospital, I'd set you up with my sister (she runs their legal dept.)  I know in the past she's mentioned that she writes some stuff off.  I don't know if they're unique in their setup or what. 

And I'd give your insurance a call and explain what's going on and ask for guidance on what's covered and what's not.  Mine's been really helpful when I've been questioning if something was covered or not. 

[seriousthistime]

I believe, Sam, that the $5K max out of pocket is per policy year.  If Aubree's bills hit $5K out of pocket in this policy year, you could also have $5K out of pocket for subsequent treatment or surgeries. When does your policy year go from/to?  Mine used to be July 1-June 30; now it's January 1 to December 31.  If you can possibly lump more stuff into one year than spread it out over two policy years, that could help. 

I suppose if I were you, I'd try to find the best place for Aubree within one day's driving distance of home.  It will make maintaining other aspects of your life easier and also allow your support group (family, friends) to go there and give you a break from time to time or just be there for you.  Children's Hospital in STL is top notch.  Also, doesn't Aubree need to be transported right after birth?  If she's born close by, that reduces the transport time, and if you deliver close to home that makes it easier for everyone.  I'd try to find the very best place within a reasonable distance of home, rather than farther away.


 

 

[Apple]

My son was whisked away shortly after he was born and taken to another hospital about two hours away.  We spent two weeks at the Ronald McDonald house (at least when we stayed, we had to be referred there by the physician, I would think this would be doable for you as well.  I can't begin to explain how much of a relief it was to be a 5 minute walk away from my child during that time, not having to worry about hotel bills or driving home).

The doctor's office should also be able to talk to your insurance and determine what should be covered under all the different circumstances.  I learned to have the doctor's office do this for me, not the hospital, seemed to get better information that way.

Hoping everything turns out well.

[Sam_2.0]

Serious - Insurance runs along the calendar year. Since we are looking at a minimum of three open heart surgeries by the time she is three years old, pretty sure we will be hitting our OOP max for years to come. She will be born by October so there's no way to lump it all into one year. This is the most complex congenital heart defect there is, so we will go where they are able to treat her. If that's here or STL, then awesome. If not then I will make plans to travel out to Boston or Philly around 38 weeks and get a scheduled c-section there so she can be treated immediately after birth. That's really the only shot she has.

I was able to find some info on Boston. Apparently they have family housing very near or attached to the hospital for $30/day while your child is being treated. DH also has contacts out there and some of the guys at his firm have clients out there. It is possible that I could stay & DH could travel back & forth with his colleagues. That way he can keep working. It looks like the first surgery happens within 48 hours or so, and then the next at around 3-4 months. The kids are the most stable after the 2nd surgery. So it hopefully won't be a whole year out there or anything. I could apply for an unpaid leave of absence from work after my FMLA runs out. There's also the possibility of working remotely part-time.

We have our specialist appointment this week & then hopefully the referral to the local fetal health center so I am hoping for more info then. It's just really overwhelming right now, but things are starting to fall into place. And I am happy to report that Miss Aubree is still happily bouncing around and loves it when her big sister sings to her

[taz157]

May 20, 2013 22:02:39 GMT -5 Sam_2.0 said:

It's just really overwhelming right now, but things are starting to fall into place. And I am happy to report that Miss Aubree is still happily bouncing around and loves it when her big sister sings to her

for Miss Aubree

[Sam_2.0]

And thank you, everyone, for the kind words & good advice. I am taking notes I even started a folder & notebook just for this stuff to try & stay organized.

[simser]

Having lived in St. Louis I would suggest the BJC/Children's hospital. If you do go that route and need support when you're there please let me know. I can call in some favors for you

Also there are 2 spectacular children's hospitals in the city (I think). So that doubles the odds of a great doctor.