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.