As per Jenn's request (plus way more information than she ever wanted)

Why Melody needs surgery:

She has always been very susceptible to strep and, the last time she had it, her tonsils never went back down. She tested negative for strep, though, so they tried different approaches and nothing worked. They even did a round of 'just in case' antibiotics and they went down by about half, then grew and flamed again. (I wasn't crazy about bonus antibiotics, but we had to try.)

In June, the pediatrician's opinion was that we'd been trying since April and nothing worked, so it was time to go see an ENT. The ENT heard the background and said it was time to yank. He asked how she slept, and I answered that she hadn't slept through the night since she was nine months old and that she has always snored. He said that was probably sleep apnea, so the adenoids needed to go as well. Meanwhile, she has averaged 4-5 nosebleeds a week, sometimes several in the same day, so he was going to cauterize her veins in her nose.

Unfortunately, Dowlan had just lost his job and we had four days of health insurance left. He offered to squeeze it in, but I was reticent to rack up at least $1500 in copays when I knew we'd be getting the kids on state insurance as soon as ours ran out. I figured it was better to wait a week or two and not have that money come out of our savings.

It was a good call and a bad one. Good because he has now been unemployed for four months and we would have been seriously hurting without that money in the bank or if we had one more medical bill to pay off. Bad because getting insurance through the government turned out to be a complete and utter nightmare.

First, we had to apply for CHIP. But I couldn't apply for CHIP until I had my first paystub from Sylvan. That took two weeks. Then I had to send in an enormous amount of paperwork that was complicated by the fact that Dixie was still on Medicaid from before the adoption was final. (We couldn't put her on our insurance until we adopted her. Dowlan's job ended June 12th and the adoption was June 13th.) Also, we didn't have formal paperwork with her name change on it. (Come to think of it, we still don't.)

So, in mid-July, shortly after charlie nearly bit through his tongue and got to get it sewn together, I send in this inch-thick envelope with paperwork. Three weeks later, on a Friday afternoon, I get a letter back saying that they need more information and that it must be received in ten days or we have to re-apply. We had sent in the only piece of paper the unemployment office ever sent us that showed what his weekly amount would be. This was not the correct piece of paper.

He spent, I kid you not, from Monday morning until Wednesday afternoon calling the Texas Workforce Commission every 15-20 minutes. About every 10th call would not be a busy signal and he would get one of those automated systems that would give 10 options. None of the options were what he needed. So he started systematically going through the options. Most of them resulted in a menu with more options that resulted in automated messages that gave information and then hung up. Going into the office did not work. If he did hit upon a combination that got him sent to a human being, it would ring a few times, then go to a busy signal or it would simply hang up.

Wednesday afternoon, he finally gets through to someone who sends him the paper. Of course, they can't send it til Thursday or Friday. Then we have to wait for it to come in the mail and then mail it and hope CHIP receives it in their magic time window. Fortunately, they do.

A few weeks later, I get a packet in the mail saying that we've been denied CHIP coverage, as we were below their income threshold, and our application is being forwarded to Children's Medicaid. I call to check on three things: 1. that I don't have to do anything else, 2. to make sure that Charlie's tongue ER visit will be covered, and 3. to make sure that they actually got the paperwork.

I talk to four different people. All of them are very courteous and professional and want to make sure that I get the correct answers, so they send me to other people with my questions, as they have no clue themselves. Turns out, had we got on CHIP, they would NOT have covered Charlie's tongue, but Medicaid will. As I'm talking to the last lady, she says that we are in queue to be processed, but that they are still working on the referrals from April and May. She knows my daughter needs surgery, so she decides to skip us ahead and process us over the phone.

I think, "Sweet! We're in the clear!"

Nope. I get to the surgeon's office and it turns out that he could have taken us on CHIP, but that he can't on Medicaid. He is so concerned that he offers to do the surgery for free. He calls to schedule it and the hospital will not allow it. I find out that I have to start over. Our pediatrician also does not take Medicaid.

At this point, both my parents and our church offer to pay for the surgery outright. That, apparently, is not allowed. I try to just pay for the pediatrician appointment and they won't let me. It is apparently considered fraud on their part to charge for services that insurance should cover.

Then I learn that there are three types of Medicaid and that we were automatically enrolled in Traditional. As I start calling pediatricians, it becomes clear that only clinics take Traditional. I call to get the kids put on Amerigroup, as that is what the practice I want to take her to will take. The lady processes our information right away, but then tells me that it takes 15-45 business days to go into effect.

I call clinics. Openings are not available for weeks, except for the clinic that takes only same-day appointments. Phones turn on at 8:00 a.m. every day and getting an appt is akin to winning the lotto. After several days' trying, she got one. I was very impressed with the quality of the care she got there, I must say. The pediatrician was a little odd, but good with kids and very thorough. She agrees that it's time for them to come out and says to call back in a few days for the referral.

I call back several times before I get an answer and the lady in referrals can't find her paperwork. She takes my name and says that she'll get one done, then we'll get something in the mail. After a week of nothing, I call back. Turns out, I was calling the wrong clinic. I was calling the City Name Health Clinic, not the City Name Community Health Clinic. I would also like to point out that their addresses are nearly identical--the same four numbers in a slightly different order and that they are on streets that are a block apart with nearly-identical sounding names.

I call the correct clinic. They tell me to call for an appointment at any ENT listed in the Medicaid book. There are five names, but four are in the same practice and only make an appointment if the pediatrician's office calls them. The other does not take Traditional Medicaid, but will take us when we are on Amerigroup.

I try to call the correct clinic, but they aren't answering the phones. So I go check the mail and find our Amerigroup stuff in the mail. So I call the other ENT and get a same-day appointment. I go to register and realize that the appointment is for September 29th and that our Amerigroup kicks in on October 1st. I call to switch the appointment and get in for Friday at 1:15 p.m.

While I'm at it, I schedule the well-child checks for Dixie and Charlie that were due in August and get Charlie's audiologist appointment in.

Once I finally got an ENT to look at her, the process was quick. We saw him yesterday, the surgery is day-after-tomorrow. But getting to this point has been an arduous process and, frankly, a completely ridiculous one.

In the time it has taken to get this all worked out, my child has suffered. She isn't sleeping well or eating well. She has always been at the very bottom of the weight charts and has lost several pounds that she didn't have to lose. She has been grumpy and unable to handle her emotions because she gets so overwhelmed. Had I intentionally allowed this to happen, I would be in jail, and deservedly so. It's neglect to have a 4.5 year old drop to 29 pounds and go months without needed medical care.

This system is so broken. But the thought of the government stepping in to 'fix' it terrifies me. After all, it is the government that came up with Medicaid.


Ksagstetter said...

Gretchen--have you ever thought about blogging for money? https://affiliate-program.amazon.com/gp/associates/join?ie=UTF8&tag=affiliate98-20

Ksagstetter said...

I realize that my comment sounded like I hadn't even read your saga to get Melody's tonsils out. This isn't true. I had tears in my eyes as I read it, because I know what a good parent you are and how hard you've been trying to take care of your little girl, and I am thoroughly appalled at the way you've been jerked around while, as you so rightly pointed out, your little girl has suffered. But I saw this link and since this is my favorite blog, and since you guys are so strapped for cash, I was hoping you could get paid for your talents.

jenn said...

Poor baby! I hope this gets resolved soon.

You're right - the health care system is this country is so broken. It truly scares me.

Heidi O said...

This system is broken when it takes that long and is that hard to get your kids well because there seem to be so many hoops and even when they offer to do the surgery for free. I think that is the craziest part. I wish there was someone more to complain to. I think ksagstetter is right about trying to get this saga published in a national forum where it will get more attention.
I hope your daughter gets better soon with this surgery. It breaks my heart to think she weighs less than my 2 yo because of her tonsils.

Tiffany said...

I'm so sorry that you've been going through all of this. I just wanted to tell you that it really helped me to drink Boost (I guess it's Pediasure for kiddos) after my surgery. I'll be thinking of her next week!

Anonymous said...

My husband lost his good job a year ago and it took us 5 months to get the medicaid/peachcare thing fixed they denied us on medicaid than peachcare denied us because they said she should have gotten medicaid i finally got 2 of my 3 covered by medicaid than the older one got dropped off of it cause she turned 6 in between getting her covered i guess at 6 u dont qualify. so after 3 more months finally get my 2 older girls covered by peachcare after sending them the medicaid denials. my dh has had 2 jobs since than and both companies folded so luckily they are still covered..dont even get me started on foodstamps we tried to get that and it was another round of fill this out no thats not right fill this out denied.even though we are under the icome limit. in this country those who need it and never used it and always paid their bills and their taxes cant get it guess cause we dont know how to work the system,
our next move is bankruptcy but who knows when we can file..hate to do it but our credit cards are suing now that we cant pay them heck i cant even buy my kids food let alone pay our cc debt. i hope your dh finds a good job faster than my husband has he just lost his most recent cause the company closed. ack!
i know what u are going through!

Anonymous said...

She will feel SO much better and she should stop snoring. (At least Chance did). The first night we were home and I couldn't "hear" him sleeping I don't know how many time I went in to check on him. If I remember he was about the same age as Melody when he had all this done.

Anonymous said...

Your problems with insurance etc, to get Melody's surgery scheduled sounded exactly what I had to do for Brittney for sinus surgery number 4 but it was a year long process. One doctor said she HAD to have the surgery immediately in May of 2003, we moved, another doctor agreed in Aug. 2003 and we were in the office booking it for the following day when insurance snaffoos came up. She finally had the surgery in Aug. 2004! We spent all that year with her in pain, on antibiotics and me fighting with the insurance before it happened. At least you had Dowlan there to help, Craig was in Korea and I spent quite a few times crying in the hospital bathroom before heading back to the insurance office and fight some more! Doesn't matter what type of insurance you have the free or the ones that costs, they still jerk you around!

Anonymous said...

If TWC and HHSC could get thier acts together, a lot of people's lives would be easier (even us employees)!Getting through to a TWC call center on a Monday is a near impossible accomplishment. I believe it happens once every 4 million years. Due to cutbacks from the Workforce Investment Act, they are a call center (Dallas) short. Recent hurricanes and giving previous filees an additional 13 weeks of Unemployment complicated matters. I believe I heard our receptionist say that "Option 7, hold your breath and stand one one leg," is the correct way to get a live representative. I can't offer any suggestions for the Medicaid people... other than keep copies, always fax, keep fax confirmations and pray. At least that's what I do with them.

I'm sorry you have to go through this... but hopefully it will all be smooth sailing from here out.

Anonymous said...

Chiming in to say we are thinking of you guys tomorrow. Let us know how it goes, and hug that precious little girl.

Insurance is a royal mess in this country. I don't agree with socialized medicine, but the current system ain't cutting it. As someone who has pretty much had coverage for most of her life and no major health issues (besides pregnancy), I have not had to deal with a lot of the BS others have had to go through. However, I received a letter from my husband's insurance company following our marriage in 2001. Apparently, my well woman visit had been tapped as I had a pre-existing condition. The condition? I was a woman (you can not make this up). My other favorite? My employer changed group plans on April 1, 2005, and our daughter was born on 3/31/2005. As the hospital needed both cards, the fact that I forgot to turn one in when I checked in was cause for the hospital flunkie to walk into my room and tell me that she needed a copy of the card right then for paperwork purposes. I got it, but I did not get the need to do it when I was in active labor, pre-epidural, with a husband who had briefly left b/c he and his mother had not had breakfast and were hungry (another rant for another day - yes, we are the ones who are thinking about kiddo #2, and I have been assured that will not happen again). The punchline? The worker stood there while I screamed, I mean, breathed my way through a couple of contractions. I think they finally agreed to come back when my eyes rolled back in my head.

I realize I am very lucky, but I have many friends and family who are hard working, wonderful people who do not deserve this crap. Gretchen, you are a wonderful mother, and those three children are anything but neglected. Any child who has a mother willing to deal with that much paperwork and garbage while fighting for his or her rights is very fortunate and very loved.

Anonymous said...

Wow What a long and rough journey! I am so glad that it all worked out in the end and that Melody got what she needed, poor kid.

I hope that your health care system gets revamped in a 'good' way, because something needs to change when a 4 year old has to go through that.

Thankyou for the wonderful post explaining the situation!