Monday, October 5, 2009

The Run Around.

Today was a bad day.

Kendall won't eat. AT ALL!! Last night she was running a fever (rectal 101) so not too bad, but she wasn't feeling well. I feel defeated since I've been absolutely and completely paranoid about getting sick. I've turned into a Lysoling, anti-bacterial sanitizing freak.

I went to the pharmacy trying to pick up Tylenol suppositories...due to the Keto diet that's really the only option we have for fever relief...oh, and the fact that she won't eat. By the way, its the only pharmacy I have left in a 10 mile radius to go to. I've had a full blown temper tantrum in pretty much every other one in our town. I ended up not getting what I needed, and leaving in an even worse mood.

Last night Justin and I tag-teamed feeding Kendall pants. He held her while I strategically positioned a spoon of formula in her mouth while simultaneously singing songs and bouncing her. It didn't work. She went to bed without medication for the third night in a row.

I feel like I'm at the end of my rope.

Today was more of the same. Her fever completely went away though. I attribute that to my non-stop praying in lieu of sleeping last night! I think she is just teething really badly. Who knows?! I could make a list of possible reasons, but it doesn't really help anything.

As if my patience weren't worn thin enough...I was dealing with Insurance companies ALL day. Seriously, I ran two phone batteries completely dead today. My ear is permanently embedded in my shoulder. For almost a year now, Kendall has been part of the Medically Dependant Children's Program (in Texas its a Medicaid waiver program where the service is based on the child's income not the parents) It was introduced to me by my friend Dana...a life saver. Kendall fortunately receives Medicaid secondary to our Primary Insurance Aetna. I thought this would be a good thing, and it has helped us tremendously. But we are at a stand still right now. See, we can't get any of her Diabetic stuff covered. The pharmacies contact Aetna, who says we have to do mail order...then I had them convinced we needed to bypass we can bill Medicaid secondary....then the pharmacies say they cant bill Durable Medical Equipment to Medicaid...Medicaid says we have to go to a specific pharmacy to do we do.....then they can't bill Medicaid because Aetna isn't being billed I contact the pharmacy....who contacts Aetna....who contacts me.....who contacts a Home Health Agency....who contacts my Dr....who contacts say the home health can't deliver diabetic I need to contact a company who can....who says Aetna needs me to do mail order!!!!

Long story short, we are going to have an $80 co-pay twice a month for Kendall's diabetic equipment. This doesn't include her KetoCal formula. I have to get that through WIC, which we qualify for since she has Medicaid. But I also had a temper tantrum in that office, so I don't particularly want to go back. Oh, and I'm a germ-a-phobe and that office is crawling with germs. Want to know the funny thing?! If we had a g-button it would all be completely covered. Want to know an even funnier thing?! If we didn't have insurance at all, Medicaid would just pay for everything. hmh...

Grrr.... nobody has any answers, and we are now a one income family! And last time I checked, Type 1 Diabetes and intractable epilepsy don't go away. We have a champagne baby on a beer budget.


TMI Tara said...

I throw temper tantrums with the insurance companies, social security, and pretty much anyone who will listen about our financial woes every time I get a chance. it is so frustrating when you want to give your child the very best possibility for good health and progress, but you struggle to afford it. All I know is that miracles happen because somehow, in the end, we always find a way. {{hugs}}

Reagan Leigh said...

Ugh. I have certainly been in your shoes and it's not fun. Not fun at all. I HATE dealing with insurance companies. One suggestion (at least for the Ketocal), we went through a medical supply company for Reagan's formula. All we had to do is supply them with a note from the doctor saying that her formula is her primary source of nutrition (they won't pay for supplements). They then submitted it to our primary insurance, which promptly denied it, and then they filed it through medicaid which pays it in full every month and it's delivered straight to our door! Just a suggestion.

Rhea said...

How frustrating for you! Maybe you could add a donation button on your blog and others who would like to help could donate. Just a suggestion. Anna had a fever last week and ended up being a double ear infection, plus four molars coming in. Hope that Kendall starts eating for you.

Debbie said...

I totally get it! The 1 income family, frustration with medical insurance, everything needed for medical needs being so outrageously expensive, tantrums and feeling like you are loosing it, limitations with the keto-diet..all too familiar!

At times it seems there is not enough sanitizing we can car is armed with hand sanitizer as my 2 other kids are picked up from school, and guess what...Hudson woke me at 3 a.m. coughing and full of mucous...and I wonder how could he possibly be sick..I have been so careful!

I feel for you with regards to getting meds down orally...although I wish my son did not have to have a g-tube, there is that one upside, convenience. I would just crush regular adult ibuprofen and dissolve in water and push it through the tube. The ironic part is early this a.m. when I was stumbling for cough syrup, it was the diabetic kind, with no sugar from when he was on the diet...I syringed it and gave it to Hudson orally...he was soooo mad at me, the look on his face told me how awful it tasted, and I ended up making the congestion worse with his screaming and crying! uggghh!

Here is to better days ahead this week! :)
Oh, and I love the last line of you post...

Jennybell said...

My husband works for a company called Pentair
We have insurance through them, Blue Cross Blue Shield and prescription card through another co.
Some things not covered by BCBS or the script co. are specified by Pentair, not by the insurance company. For my daughter's carnitine prescription I had to write to Pentair's person in charge of the insurance (at the main co. in MN) and explain why she needed it and why they should pay, even though it's a nutritional supplement.
Don't know if something like that would be an answer for you.
Also about the state program you get, we live in Ohio and my girl gets what's called Bureau for Children with Medical Handicaps and they work as our 2nd insurance, cover 100% of what ever our insurance doesn't, as long as it pertains to her epilepsy (though they've paid for antibiotic so go figure!) Just so everyone with a child with serious health issues knows, our BCMH nurse said it's a federal law that all states have to have such a program. It seems a lot of states don't exactly broadcast that!

Bronx Cataldo's said...

Oh Girl I know the pain you are going through. I just had a fight with the medical supply company over getting a g-tube button for Finnian. They keep saying he can only get one every 3 months but come to find out they were billing his medicaid and not his insurance for it. His insurance will cover a button a month if he needs it we do it every other month. Now his insurance covers his formula but then he is on the soy version of the keto diet but it is his main source of nutrition.I got a bill for a pet scan that got denied by the insurance as expirmental but when I questioned them and said it was done on him to see if he was a canidate for epilepsy surgery they told me oh its covered just tell the billing company from the hospital that they have to use the correct code and they even gave me the code to tell them. That was a huge weight of my mind. I also got a call from the insurance that we need to use the mail order option for his meds but finally after talking to about 5 people including the pharmacy they are allowing me to get his meds down the street from me. Ahhhh insurance we cannot live with out it and its such a pain in the bu... to deal with at times.
Hang in there

ParkerMama said...

I can so relate to what you are talking about with the insurance.

Have any of your doctors mentioned a possible g-tube for you sweet little one?

jocalyn said...'s been mentioned. More than once. Maybe I'm in denial, but the thing is, Kendall does eat. When she's sick its a different story. But for the most part she's a pretty decent eater. I don't know. I've definitely warmed up to the idea these past few days. It's taking its toll on me.

Cjengo said...

I am so sorry Jocalyn. I have aetna, and MDCP too, and am currently battling additional therapy. That is not like diabetes, but still insurance irritates me, and I am sorry. I have also thrown huge HUGE fits at walgreens to get our insurance covered, I swear they make stuff go through now to just not deal with my tears. I also understand the eating situation. Hugs

Let's get together some time

Anonymous said...

If you didn't have insurance at all, Medicaid could tell you no and you would have less recourse to get what you wanted.

Caring for a champagne baby is definitely difficult but your fellow club members are chiming-in with lots of support.

(Separate from all the insurance issues) can you ask (your favorite) MD (Dr. Endocrinologist?) for a back-up feeding plan just for when she is sick?

With her blood sugar and ketones in delicate balance, I'm wondering about 'treatment' feedings - iv, ng, outpatient? Sounds awful, but I'm trying to problem-solve here, and can't help but wonder if there isn't something that can bridge her back to eating in lieu of an emergency g-tube.

jocalyn said...

Thank you everyone for your help. We will figure it all out...eventually.

Barbara, as always, thank you so much for your words of wisdom! This is a great idea and I am calling our Endo right now about it.

Anonymous said...

I am so sorry for your frustration. And how ironic with all your ranting and raving and on your page is "Ads by Google" and they are ALL for Medicare Insurance. Which I know she cannot get but it sure was ironic to see insurance ads beside this post. Talk to you soon

Mrs. Shay

the fishers said...

Hang in there, Jocie. I can't imagine what you're going through, but your spirit inspires me...

Stephanie said...

Oh Lord have I been there. Only I didn't have a temper issue when my son's medicaid wouldn't pay for the med at the pharmacy because Aetna had to be billed first I cried. Literally broke down and cried. Medicaid wouldn't pay, Aetna wanted an outrageous copay I couldn't afford, he needed the meds for a strep infection.
I cried so hard the pharmacist pushed the bag to me over the counter and called to the clerk "she's good to go". He just gave it too me. I thought I was gonna die I was so amazed and grateful.
The next day my husband filled out papers to remove our son from his Aetna coverage and we went with full medicaid. Now they cover everything no problem.
What's with that???

Stephanie said...

Oh, I was reading some comments from others and my son has a g button. We really fought hard not to go there for at least two years.
Finally when he had a surgery that required a temporary tube for decompression, his gastro doc suggested just trying some supplemental feedings and I was amazed at the results. He eats orally also but we use the button at night to supplement his intake, and with fragile kids like ours it's a lifesaver to know we have more control over intake and meds when they are not well.
He's actually had two, the first I'll admit was a nightmare but it was due to some unforseen issues we couldn't have seen coming.
The new site is wonderful and healthy like they usually are and it's such a great load off my mind to know that there isn't that stress of worrying if he's getting enough nutrition or getting all his meds. And when he no longer needs it we can always remove it.