It seems like it was just yesterday I was killing myself trying to find a way to take Parker out of state to have his pull down surgery performed by someone who knew what they were doing.
Yes, the scars of frustration are still that fresh.
We got lucky and found an amazing surgeon here who was not only willing to work with the doctor we had hoped to take Parker to at CCHMC, our surgeon even KNEW the guy.
It’s called Tender Mercies. And I believe.
Lately I’ve been thinking about taking Parker out of state (Denver or California) to see an actual specialist in the area of Pulmonary Hypertension. I have the blessing of both Parker’s Pedi and Pulmo.
Not just a cardiologist who has an interest in PH, but someone who has made it their life’s work. Someone with a proven track record of keeping kids with this awful disease alive.
The biggest road block staring me in the face is the same one I couldn’t move the last time:Â Our insurance doesn’t cross state lines.
Seeing a PH specialist wouldn’t be the same as having a take down surgery done in a different state.
First of all both Denver and California are within driving distance. My Mom and I would go and I would hire a nurse to accompany us. There would be hotel costs, food costs, fuel costs, and costs I’m sure I’m not even thinking of at the moment.
And while right heart caths are pricey, they are not as pricey as a surgery that connects a kids intestine to his tush. Parker’s hospital time would be significantly less.
We could go once, have the cath performed, meet with the specialist and then be followed from here in Utah, making trips back up if and when necessary.
What has my heart really leaning in this direction is that Parker’s liver panel has been spiking up the last three months. It’s most likely from his PH meds. But the only way to know for sure which med is the culprit is to slowly reduce one med at a time until better liver panel results are achieved.
The question that keeps floating around in my mind is what if we have to totally remove him from one of his PH meds? What does that mean for his disease prognosis?
Then you add in the catastrophe that was Parker’s last right heart cath, and well maybe you can understand where I’m coming from a bit better.
It’s not that I don’t really like our cardiologist. We do. We owe him so much. Twice he has gone to bat for our Brave Hero working magic and making a miracle or two.
But he’s not a specialist in the area of Pulmonary Hypertension. He attends the conferences and reads the write ups. I can’t help but think that a fresh pair of eyes might be able to offer up some fresh ideas.
This time taking Parker out of state to see a PH specialist seems do-able. And there have been things in the wings falling into place that support this feeling of mine.
Once again I have the opportunity to embrace my faith and see how it all plays out.
How about you? Have you taken a child out of state to see a specialist? How did it go? Were you glad you did it? Do you wish you had ever taken your child out of state to see a specialist?
Children’s in CO is our home hospital, but we have taken Max to NIH for a study there. They worked closely with our home doctors, and we took him to Stanford, when we lived in CA, but they referred back to CO. As it turns out, we’re in the best place for his rare metabolic disease. Go figure! 😉
If you do choose to go out of state, have you thought of inquiring about one of the mercy flight type flights that are charitable flights to medical treatments? http://mercymedical.org/about-us/programs/
http://www.angelflightwest.org/index.php?/how_it_works/
http://www.aircharitynetwork.org/
These are 3 we’ve looked at to get back to NIH for Max, but the trips we’ve started to plan, he’s not been well enough to travel.
We have a couple of Ronald McDonald houses here, one close to the hospital, http://www.ronaldhouse.org/aurora.html
And if you do end up coming here, I’d love to meet up!
Deana recently posted..Monday
I have taken my daughter out of state to see specialists several times and we are getting ready to do it again. I was so much happier with the specialist we saw the last time we went that we seriously considering completely transferring her care to an out of state doctor and traveling back and forth. I really loved the approach the doctors out of state took…they were much more proactive and wanted to try to prevent problems rather than take the wait and fix the problems after they happen approach our instate doctors have taken. For us the fresh pair of eyes made a world of difference. I have not regretted taking her at all.
We did fly and that was challanging with all her meds and the cooler and VEST and Nebs and portable oxygen and all the other things that needed to accompany us…I felt like a pack mule in the airport…..but the payoff was sooooo worth it.
Our insurance said they did not cross state lines either, but when the other hospital billed our insurance paid at 100%…not sure why but little miracles do happen. We have since used our insurance out of state several times with no issues on coverage.
My daughter also needed to be hospitalized once when we were out of state at a family wedding. It was a really positive experience and ended up being a place we went to for a second opinion later. Also an experience where fresh eyes made a difference.
The last time we went out of state for care, I called the clinic ahead of time and was able to have a very extensive discussion with the midlevel prior to us going so I understood where the clinic stood on philosophy of care and other issues. I was actually able to get a very good feeling for what our experience would be like before we got there. We are preparing to go out of state again and I did the same thing and found the other clinic very receptive as well. It really helped both times to discuss some of her history prior to going so that was out of the way and we could bring copies of things they wanted with us instead of having to go back again later because they needed other information. I would suggest trying that.
One of the things I did learn taking my daughter out of state is that the best in the world is not always the best for my child. We went to great lenghts and expense to see the best in the world and he was about the worst ever for us….he was a very poor communicator and she hated him.
Twitter: kadiera
Feb 9, 11
We have not, but we know quite a few people that have.
I’d suggest contacting the office up there before making the appointment about a pre-consult – I know, for example, that the folks @ Cincinnati’s airway clinic do consults by email and will tell you if it’s worth making an appointment and making arrangements to travel.
That can also give them time to help sort out the insurance issues….
kadiera recently posted..13 week updates
This hit home! Lennon’s original and main care is/was in Virginia. 8 months ago our docs wanted him to be evaluated by another specialist team.. in Pennsylvania. In August he was approved for his third liver transplant and are currently out of state recovering. Right now I struggle with communication about what we do and need at home being that we are out of state and what criteria needs to be met to come to PA. Ugh… I think I kind of feel your pain…
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The Children’s Hospital in Denver is where we went for Jayden’s heart surgery 2 years ago. It is out of state for us and our insurance company allowed it to be in-network for a one time deal. Then he had follow-up with his regular cardiologist. While we were there, the pulmonary specialist was part of Jayden’s team of doctors. I can’t remember his name! But if you want it, I can look it up in some of our insurance papers from back then. Let me know!
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Our daughter was born with TOF, PA & pulmonary hypertension. We live in Arizona and discoverd when she was about 8 yrs old that she needed a pediatric cardiologist that specialized in pulmonary hypertension to treat her. We first went to see Dr. Barst in New York and saw her for 3 or 4 yrs. When Becca needed surgery we traveled to Lucile Packard Childrens for Dr. Hanley AND their pulmonary hypertension ped cardiologist Dr. Feinstein. They along with Dr. Dubin (the electrophysiologist) have not only saved Becca’s live but imporved her quality of life greatly. I realize insurance is a problem and is for us tooo BUT I have always advocated for going out of state because Az does NOT have a ped cardiologist that specializes in pulmonary hypertension and that is what Becca needs.
I beleive Parker is on Tracleer (Becca is too) and that is probably the med you are talking about. I know there are some new meds. Whether they are more gentle on the liver I do not know but maybe.
I say again going out of state has not only saved Becca’s life but improved her quality of life greatly.
with Hope,
~ Chris Atherton ~
Atherton2@cox.net ~
Chris,
Was there a specific reason you chose Cali over Denver? I’d love to know!
What do you mean your insurance doesn’t cross state lines? Have you checked with Denver Children’s to see if they will accept your insurance? They have accepted out of state medicaid and private insurance for children I work with and worked well coordinating care. They are a regional specialty center, so they are designed to serve both in-state and out of state children. Is the problem with your insurance refusing to pay for treatments out of state or not knowing if an out of state provider will accept it?
Davilyn,
We tried to take Parker out of state for a take down surgery about 3 years ago. Our insurance wouldn’t cover us going to another hospital that wasn’t an IHC hospital.
It isn’t an issue of another hospital accepting it.
Our insurance falls under the IHC umbrella…..it owns the hospitals, insurance company, and home health care company.
Parker does now have Medicaid. Does Medicaid cross state lines?
Thanks!
And will Medicaid pay out if my private insurance company won’t? I have an issue with a Pulmo bill that Medicaid won’t pay on because Parker’s private insurance won’t pay out on it.
I guess I have a load of phone calls to make.
My experience is with Wyoming medicaid but I *think* it can be generalized. Medicaid does cross state lines if the hospital or provider is willing to bill to that state’s medicaid. As I said earlier, Denver Children’s is a regional specialty center so they do accept Medicaid from surrounding states. In Wyoming, Medicaid as secondary insurance will pay the full amount IF the primary insurance declines. You just have to provide proof that it was submitted and declined by the primary coverage. When scheduling at appt. at Denver Childrens they will ask about insurance…they are very good and know what needs to happen to get payment worked out. We have never had a problem scheduling and getting the appointments/procedures paid for with Medicaid coverage. Hope this is helpful to you!
Twitter: nehimomma
Feb 11, 11
Tammy I can promise you that Denver Children’s has taken Utah medicaid before..and vice versa. They send each other certain specialties that the other is more equipped to deal with. I bet you IHC…actually can promise that IHC has paid bills to denver children’s as well. If nothing…it should be Out of network…which generally pays less…but does pay something. If you had an 80/20…Out of network often is 60/40.
The difficulty is forcing IHC to do it..and then forcing medicaid to do it as well.
And yes Medicaid should pick up the pulm bill. If you really wanted to make it go faster…I’d ask IHC to pay a buck…then medicaid would have to pay the rest LOL. But we had IHC insurance when we saw Dr. P so I can’t imagine she’s not taking any IHC patients.
Ugh. I HATE that getting the best care for our kiddos gets hung up on insurance. IT SHOULD NOT MATTER WHAT STATE THE CARE IS IN, THEY SHOULD BE COVERED! We should be able to take them where we know they will receive the best care.
We’ve been lucky (*knocks on wood*). We live in Indiana and took J to Boston Children’s for her first (almost) 3 years for her short gut & GI issues after researching & learning that they were the foremost experts in the area needed. We also saw lung specialists there. We LOVED Children’s and wish we lived closer. Our insurance covered, but at a lower rate, and we had to pay all the costs of travel, lodging, etc. (of course). We switched specialists when J stabilized and we just didn’t feel like we could swing the additional cost. We switched to specialists in Ann Arbor, MI at U of M, who are still out of state for us (and still a 6 hour round-trip drive). Our insurance still covers, but, again, at a lower rate.
Bottom line? I would like to say that I would take J wherever we needed to, regardless of insurance coverage, but I know the cold, hard facts of the devastatingly exorbitant cost of specialists and advanced medical procedures. I can realistically see that sometimes, it just wouldn’t be possible. And that makes me sad. There’s just something very wrong with that.
Keep us posted on your decision with Parker!
xox
PsychMamma recently posted..Nature COLD Nature
Tammy – YES~!!!!! Medicaid WILL cross state lines in two situations: #1: you get a referral from the cardio/pulmo you are currently working with. They will probably have to write a letter of need stating that they have done all they can and this specialist has things available that they do not. Also, make sure they put in the letter that while the initial testing and treatment maybe a bit more expensive, the goal is to resolve the PH and get him OFF of the vent – thereby saving money. Make sure they state somewhere that they will follow locally, but that doc will be in charge of treatment and care would eventually come back to the pulmo/cardio locally with minimal follow-ups out of state.
#2: With all the snow we’ve been having, it might be a nice time to take a vacation to someplace….say, Denver. Then, you just may have to take a trip to the E.R. at what ever hospital your specialist works at. And since you carry a complete set of records with you when you travel, it may be a good idea to admit him and do some testing to see if it is safe to travel back home. ;P
We have had to do both. The E.R. trip wasn’t out of state, but was out of our network at the time. Christopher had been in the hospital for almost 2 months with no relief. They decided the best way to deal with his reflux and aspiration was to disconnect his esophogus from his stomach! We had them discharge us at 10 p.m. and drove all night to Chicago. We went in through the E.R. and were admitted. Turned out to be a reaction to formula!!!!! We were admitted for 3 weeks and that is now one of our favorite GI docs. Funny enough, he is the one that referred us to Milwaukee when we couldn’t figure out the weight gain thing. (It still isn’t figured out totally).
Now, in order for Medicaid to pay the hospital will have to bill your regular insurance and get a denial. The regular insurance may or may not pay anything. Medicaid will pick up the difference. As long as your regular insurance is billed FIRST and denies – Medicaid will pay the rest. It doesn’t matter if they pay anything!
Before the healthcare reform, we had met the max on our regular insurance. However, that is how we were able to get care in some places. If you said you had a medical card they would mess around scheduling appointments until you gave up. If you said you had insurance, they got you right in. WE knew BCBS wasn’t going to pay anything, but they didn’t until they billed. Then they would have to bill Medicaid if they wanted anything.
It sucks that we have to learn to play this game, but we didn’t make the rules. Maybe someday, we can take our medically fragile kids where ever they NEED to go and not have to worry about this stuff.
Hugs!~
Steph and Christopher
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If you come to Denver, please let me know!! I would love to meet you and Parker!
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As you know, Kennedy and Kellsey both go to Shriner’s in Philly to be seen for their AAI/AOI. We also took Kennedy to Cincinnati Childrens for awhile for GI because Vandy’s GI clinic is HORRIBLE. The one in Cincinnati was MUCH better. It’s hard to travel sometimes, especially when you have other kids, but it was/is so worth it for us. That being said, I am hoping that when we move to CO we are happy with all their clinics there. We will still go to Philly though. Good luck with your decision!
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