Tuesday, April 01, 2008

Where I'm not.

This morning, I'm supposed to be at an appointment with KayTar's feeding disorder specialist.

Guess what?

I'M NOT.

Why?

No insurance.

Like I said this weekend, there is a facility fee (RENT TO SIT THERE!) of $120 for a 1-2 hour appointment, most of which is not being spent actually seeing a doctor. On top of that, there is also a physicians fee of between $90-150, since we are returning patients. If we were new? It would be $200-300 to see the doctor. If the doctor were to choose to run tests? We're looking at another $200-$450.

So yeah. We rescheduled for the first available, JULY. Hopefully we'll be insured by then.

I rescheduled, not because she doesn't need it. Oh, how she needs it. But because financially it isn't a wise move and I know that in 3 months, we'll be in this very same boat anyway. Her weight is maintaining, so it isn't urgent. Pediasure suits her just fine. But if we ever want to have hope of getting past this, KayTar will need to see this specialist AND restart her OT. Neither is possible until we are insured.

Yesterday she ate:

One bite of chicken
One Oreo inside (just the cream)
Two fries
Three bites of guacamole

Every day seems to be variations of the same. Chips are usually a hit, we can usually get her to eat a serving of chips a day, but nothing is for sure. And even so, CHIPS? As a sole food? Not good. Even foods she really enjoys, she won't eat reliably. She eats something really well once, and it is a week or two or four before she eats it like that again. We've been treading these waters for 3 months now, and honestly, even with the appetite stimulant, there is no end in sight.

I'm so very thankful for Pediasure and her trusty bottles, because without that magical combination buoying her weight and health, we'd be in much more serious territory...maybe contemplating things like surgery at a time when we have no insurance. So for that, I am thankful. I'm thankful we are only having to decide against NEEDED treatment, rather than having to decide against CRITICAL treatment. But honestly? No one should ever have to choose between their health and their finances in any way, big or small. Sadly, it happens thousands of times every day right here in the wealthiest country on earth. And still, as a society, we approve of this, we think of health as a privilege, as something only the wealthy or insured deserve...that if someone is neither of those, they should just try harder. America, the land where anyone can pull themselves up by the bootstraps, where if you catch a tough break it is no one's fault but your own. America, where it can't be the system that is broken...no, it must be the people that are broken.

Photographic summary of KayTar's relationship with food. Entitled "How This Pains Me".

31 comments:

Mimi said...

That's what gets me, Kyla: this crazy American individualism, like somehow cooperation or a safety net of some sort is for pansies or commies. My god! how can you pull yourself up by your bootstraps if you had to take your boots off to bail out the boat constantly?

I'm so upset I'm mixing my metaphors.

Just keep those stories out there. It makes a difference.

Jenny, the Bloggess said...

Oh, the look on her face.

Each day is such a battle for her. Imagine how strong she'll be when she's our age.

Beck said...

Your country needs a working healthcare system. It really won't turn you into a nation of communists.

And on another note: have you tried making your own oven chips? I can sneak ones made from sweet potatoes past my kids, and it might be a way of getting a tiny bit more nutrition into her.

carrie said...

I'm pulling for you guys. It makes me want to choke the bastards that make it even possible that you are in this position.

Keep fighting hon, I know it's hard - but don't give up.

Mad said...

Our ultra-conservative Prime Minister takes his kids to the doctor for free. Beck is right, your nation will not be populated by communists if you get universal health care.

BTW, did you see bon's post yet?

Mad said...

Did you put that green pic up just this second? 'Cause I swear it wasn't there a minute ago.

Julie Pippert said...

How this makes me feel. *withoutwordsoverwhelmedimpotentfurysadness*

Too long for here. Ranted on my blog.

~aj~ said...

I couldn't agree more with all your thoughts in this post.

On a side note...have you ever tried the Good Earth chips? They have all different flavors and each one has some kind of veggie in it. They are still chips and not necessarily healthy, but better than nothing. My chip lover thinks they are awesome.

Magpie said...

It's so broken. So so broken.

I really hope things look up, for you and KayTar and everyone else in our country.

painted maypole said...

see, i would have entitled that photo "America's health insurance crisis BITES"

Kyla said...

Oh, Painted Maypole...you are clever. I love it!

kittenpie said...

This is exactly what has always bothered me about the American Dream, is it has this dark side, this side that allows you to kick aside or step on those less lucky, because obviously, they are just lazy, or they would be making it. Talk about license to kick people when they are down.

I really believe a government has a duty to its people to keep them at some minimal standard wherever they can, and health should be a basic. I don't want to slam your country too much on this, because it is what it is and it has its own history and ways of thinking that are different than ours, but I think living somehwere not at least somewhat socialized would just go against my grain in too many ways.

Bon said...

it saddens me and angers me, Kyla...and like i said over at my place, mostly just baffles me because as a Canadian i'm unfamiliar with the discourse defending this ridiculousness i swear, our health care system hasn't made us into terrifying pinkos or anything. (well, maybe me. but i was a pinko all along.)

i'm sorry that you have to choose, because it's wrong. and i hope the American people can come to weigh in behind some kind of simple, sensible system that cares for people, and soon. ours isn't perfect, but your situation? would never exist here.

there's a cheap house for sale just down the street...

Anonymous said...

I too agree with everything you wrote. What you are going through with Kaytar has really made me question my true beliefs on the healthcare system in this country.

Keep plugging at them Kyla! You are doing a phenomenal job.

Oh, and I too 2nd the veggie/fruit chips :)

Amy Z.

Family Adventure said...

This whole thing is disgusting, Kyla. I am appalled to be standing by the sidelines like this, and I don't know what I can do about it.

You and Julie are a powerful duo, and I know there's more of you out there in the great US of A. I hope you are able to start a ground-swell and change the tide. Much work needs to be done, but it's happened in other countries, and it CAN happen in yours. And who better to start it that those whom it affects so directly?

Heidi

PS: That was sheer brilliance on the part of Painted Maypole.

Karen said...

we just aren't doing this well are we?
everything Julie said at her post and Bon at hers - and well, more & more unsaid stuff that all sums up into, we must do more and better for our little ones.

amanda said...

I am frightened at where our healthcare systems are heading. How unfair this all is!

She is beautiful, though.

jeanie said...

It really pains me to see the hoops you have to go through to even get to the "Go" where you find out what may help your baby.

As the sister of a mother of a child who doesn't like food, here is a link to her sausage roll recipe that her non-eater actually occasionally eats:

http://bushbabe.blogspot.com/2008/03/food-food-glorious-food.html

Becca said...

Still so frustrated for you! Nothing more to say. It's infuriating.

cinnamon gurl said...

I so so so hope something works out for you very soon, insurance-wise. What a shitty shitty system.

Lisa b said...

oh Kaytar they are YUMMY
really, trust me.


Kyla it is just so wrong that you have to make these choices.

NotSoSage said...

(Kyla)

I can't...I don't know what to say...I just want to buy a new house big enough for all of us and move you up here. But it's more than just one family, I know, and what's so cool about you is that you always keep that front and centre.

xox

Aliki2006 said...

Pure insanity, this health care system of ours. I'm sorry you're going through all this...

L. has a long-awaited appointment Monday and Tuesday with a feeding specialist at the nutrition and behavior clinic. We're holding our breaths that insurance will pay.

Janet said...

I hate that you have to choose. It's wrong. Wrong, wrong, wrong.

But you know that.

flutter said...

Oh little girl. I just want to feed her, as I know you do.

gah!

jen said...

i can't freaking believe this is how you have to live. i can't freaking believe you are not going ballistic.

do you want to marry me, domestic partnership? i've got insurance. i'll do it.

Chaotic Joy said...

Tonight while we were doing our devotional with the older kids Ben was sitting in my lap (he is usually asleep). I asked him if he had any prayer requests. He said, after much deliberation, "I want to pway I can stop eating baby food and eat big people food." It was like someone punched me. In the heart.

It really is so hard for everyone involved isn't it? I wish there was a better answer for you and sweet Kaytar. I do. I'll keep praying.

nomotherearth said...

No one should have to choose. i'm so sorry, friend.

motherbumper said...

I can't believe you have to make choices like that. I'd have a breakdown. Healthcare should be for everyone.

Christine said...

geez--i can't believe the cost of all the doctor's visits! i so hope you guys can get insured very soon.

Bush Babe (of Granite Glen) said...

Jeez... hardly know where to start here. I am Jeanie's sister (she referred to in her comment) and I feel your pain!

I have two kids - one gave up eating entirely (for about 9 months!) and had to be tube fed. He was born with congenital heart conditions which were repaired and he 'came good' slowly and with help from a professional.

His sister is otherwise healthy but the world's fussiest/most stubborn eater (OK that's exaggerating, but it does feel like it sometimes). She eats WeetBix cereal, honey sandwiches, plain spaghetti and sausage rolls (home-made recipe at link Jeanie posted). Oh, and ice-cream. Sooooo healthy!

As for your health system... seems unbelievable to me that the great US of A sticks to this archaic and unfair setup. I'm an Aussie and our system ain't perfect, but the public health/Medicare system works well most of the time. We do have insurance which helps get higher level care but don't pay the astonomical amounts you have to... I just don't understand how the greatest democracy in the world can seriously continue on this track. I hope to God I never get sick when I'm visiting!

None of this helps you though. Hang in there til the next appt. Try and stay positive (I know how hard that is, but it's real important) and I hope to be reading about a great breakthrough in the next few months. Use all the resources at your disposal (support groups, the net etc).
Hugs
BB