Monday, October 19, 2009

Walk a day in my shoes

When you have a special needs child, especially one that has lots of medical needs - nobody tells you how hard it's going to be, and just how many battles you will face daily. Battles with your emotional state, battle with dreams you had for your child now lost, battles with the state agencies to get your child services, battles with therapists to provide the best possible care needed for your child to push them toward progress, and the never-ending battles with your insurance company and the vendors they don't pay on time... leading to battles with credit agencies over your insurance company's mistakes that have lead you to this situation.

Last week and this week I am working on clearing up some medical bills. I only do this about once a quarter, because I just can't live my life being that angry all the time. Why would I be angry? Below was the scenario to clear up ONE single medical bill that was not paid by insurance and turned over to the collection agency for reporting... here we go:

1. Call the insurance company (let's call them UHC to shorten the typing here) to see why this vendor's bill had not been paid.
UHC says they don't see that this was ever filed with them.
I say the vendor's statement shows it was denied by them and gave them the dates.
I am told that this does not exist in UHC's system - and I am going to have to call the vendor to get them to send it in for payment.
(35 minute phone call)

2. I call the vendor who tells me what is on the statement is accurate and they reaffirm that UHC denied the bill.
I am told I need to call UHC back and should probably ask for a supervisor.
(25 minute phone call)

3. I call UHC back and they once again tell me they can't find it in their system. I ask for a supervisor.(This happens A LOT, so you can sense my building frustration and anger - I mean - hello - do you people know how to access your own system??)
They find it in the system and that it was denied. They tell me they can put it through for payment again, and the process will take about 10 days.
I said I've already been sent to collections on it because this was supposed to be paid by UHC already and I want to speak to another supervisor.
Next supervisor says yes, it should have been paid and the denial reasons in the system don't make sense. He tells me it will be put in rapid review and someone will call me back in 48 hours.
I ask for another supervisor, because I don't have 48 hours, I am in collections over your mistakes.
Next level supervisor approves payment of the bill, after I walk him through the reasons it shouldn't have been denied in the first place, and says a check will be to my vendor in 10 days.
(Phone call takes 75 minutes to complete)

3. I call the vendor back with all the information about how this bill will be paid and their check has already been approved. They notate my account and tell me I need to call the credit agency myself. But when they get paid, they will notify the agency.
(phone call takes 20 minutes to complete)

4. I call the credit agency to alert them that this bill will be paid to the vendor. They say they will notate my account, but the vendor must notify them before they will remove it from my credit report.
(phone call takes about 20 minutes)

So finally, after all this... I still have balls in the air I must come back to check on in 11 days with all parties to ensure payment has been made and it's been removed from my credit.

People - I want you to remember one thing here - this was for ONE SINGLE medical bill!! It took 4 phone calls, and an hour and 35 minutes to TEMPORARILY get things in order on this ONE SINGLE medical bill.

Last week I had to process 6 medical bills, and have 3 more waiting for me this week.

I repeatedly tell the insurance company that this is undue stress on a family that's obviously already so taxed financially and emotionally and that this is not right. I realize that I never talk to anyone who can actually do anything about it, but it does get me (eventually) to the right people who can at least do something about my account. I tell them that we don't put their monthly premiums into "review" at our house to determine if they get paid or not, and they shouldn't treat us like this when we pay our premiums always and on time - that they should not be putting this undue burden on us all the time and that they need to pay the things that our coverage outlines as covered. DANG IT!! (I'd like to use stronger language here to express my total frustration, but I hope that you can kind of get the picture and insight into this ridiculous circus we are made to play for EVERY BILL that comes in.)

I thank God that He provided me with a loving husband, who after seeing me go through this for over 3 years was actually in the room with me one day last fall when trying to handle one bill... and got nowhere on the phone after 3.5 hours... got his own upfront and personal front seat to what it's really like. He at least agreed to take over handling the rest of our finances. Now I handle medical, and he handles household. A true partnership - and I love him for it.

We did the VICTORY WALK for breast cancer at LSU this past Friday, so here are the pics from that. We walked in honor of my sister Shala - 3 time survivor of breast cancer. We are so blessed she is still in our lives and she is an inspiration to all of us to never quit fighting and never give up. I'm surrounded by people of miraculous strength. My mother by all accounts barely made it here - as a baby had a complete blood transfusion and they didn't really know if she was alive or comatose for about 10 days until she wiggled her big toe! And I don't have to tell you what a fighter my son is. And you wonder where I get it from...

Working on filling all those orders for the fundraiser - thanks everyone for your support!!

Braden, Kodi & Brad

Sunday, October 11, 2009

"How is Braden?"

Although modern rules of society have laid this out as a common pleasantry for us to exchange with one another as a follow-up to "hello"... it's really quite a loaded question, regardless of who you are asking. Most often, we simply reply with "good", even though many times things are far from being good. It breaks socialization patterns for us to REALLY say how things are... I think the answers we commonly give really reflect the current attitude of "HOW" we are handling our current life crises. Yes, I meant multiple yet separate collaborations of crisis totaling up to the plural form - crises. So the "good" we share with one another is hopefully more a reflection of our state of attitude in handling our current situations.

We as Braden's parents in responding to those questions about Braden, I think try to respect those who ask about him with a little more honesty into our current situation. We know you are asking out of genuine concern, and therefore we try to respect that with providing more of an insider's view into our current situation, without overloading you with all the details, unless of course, you ask:-)

With Braden we usually have a few standard pat answers: good,OK, struggling a bit, or not well.

"Good or really good" usually means his health is in decent shape, he is sharing a little of his attitude in being messed with, and his seizures are down to a minimal less than 3 a day.

"OK" usually means he might have a cold or fighting asthma, might be having about 5 seizures a day, fighting a fever and is crankier than usual.

"Struggling a bit" usually means we are fighting a bronchitis or pneumonia at home, fighting a fever, fighting a cranky baby who is restless and having more seizures than normal.

The "not well" is usually reserved for those times when we are hospitalized, because Braden's status can vary from one hour to the next, and we've not been well long enough to warrant a better status condition.

Braden's current status would probably fall between "Good" and "OK" these days. Mostly, we have overcome the respiratory viruses we were fighting this last month, but just when we think things are back to status-quo... Braden has thrown us a few challenges. For instance, yesterday, for unknown reasons he threw us a fever and started having multiple seizures back to back and he just couldn't rest or relax. Last week he decided to start breathing like he needed to catch his breath... obviously nothing a person on a ventilator needs to do. So we are reaching out again to the medical community and our medical team and really looking at everything for Braden including his diet and supplements/mito cocktail. We will be meeting with some new doctors and consulting with others who might be able to help us address specifically the needs of Leigh's patients. We know there is no cure, and we know the eventual outcome - what we are hoping is to find what HAS worked for other patients to make Braden more comfortable long term, as his disease progresses.

We thank you for your continued concern, support, and prayers for our little fighter. We will offer updates on the Fall Fundraiser later this week! The fundraiser will not only help us cover medical expenses... but we hope to raise enough funds to put a nice down payment on a handicapped accessible van with a lift and room for our family to grow by this time next year.

Sending you our love,
Braden, Kodi & Brad

Monday, October 05, 2009

Latest News and Mito Video to share

So now that Braden has had nearly 30 days of antibiotics and two nebulized steroids, we were hoping for a little better outlook. While his overall appearance and health are MUCH, MUCH, better... Braden still doesn't seem quite "normal" for his baseline. He has shown signs of extreme aggitation for prolonged periods, and some strange breathing patterns. The respiratory doc should be seeing us in the next few weeks to address what we can, however there is some indication that this is simply the progression of Leigh's Disease.

This may mean that there might not be much we can do to fix the problem, and rather we must do what we can to deal with the symptoms and side-effects to minimalize their impact on Braden's overall health. For instance, Braden's lungs sound the most clear they have in a very long time - however - he seems to be struggling some at night with random asthma attacks, a return of the thick mucus, and a need for overnight oxygen, which we have not needed in quite some time now except for when he is sick.

Braden's follower "Layla's Dad" recently posted this video on his blog, and I thought it might really help some of you understand what living with a mitochondrial disorder is really all about, in simple terms. I hope you enjoy the view:

We have finished up Halloween costumes, and this year should be lots of fun as mommy goes as the Wicked Witch of the West, daddy will be a witch's "winkie" guard (you know, the ones that chant "oh-wee-oh, oh-oh"), and our precious Braden will be going as a flying monkey! A tribute to our KS roots - we hope everyone will enjoy the photos later this month:-)

LaTacia was kind enough to babysit and allow mommy and daddy a date night, daddy got surprise tickets to see comedian Ron White - thanks Tacia!!

Thanks to everyone who is ordering food this fall for his fundraiser - and EVERYONE can stay tuned... SPRING will be a silent ONLINE auction (join in the fun from anywhere)!! This year we are trying to gather funds to put a down payment on a converted handicapped van to transport Braden, by this time next year.

We will post when or if we have any more news to share on Braden's condition.

We thank you for your continued support, love, and prayers!
Braden, Brad, & Kodi