Friday, March 11, 2011

Finding our way

We are finding our way through the rough patches of life with a fragile child. I'm still here, and I'm checking on our friends, although comments have been scarce. I'm trying!
This time of year is always rough, its when our insurance has started over for the year, and March is usually the time the bills start coming in, and I find myself digging through whats what.
Today I paid an 800.00 doctors appointment bill that I've been fighting for a year. I finally had to just pay it as it had gone to collections. I'm trying to find the energy to keep fighting to have it reimbursed, because I know it should be covered!
You may know that every medical bill has a code. We found when Jax was just a few days old that a diagnosis code of Down syndrome is never, EVER covered. On our EOB it says "this mental health diagnosis is not covered." Mental health???? So I'm constantly calling about bills that need to have the code changed. After all, I don't take Jax to the cardiologist because he has down syndrome. I take him because he has cardiac disease and pulmonary hypertension. Most people don't really understand where I'm coming from. I really don't mean to sound bitchy, but if I just had Arina I would have no idea either. So all of the nasty comments I receive when I do a post like this are from people that just plain don't understand. You have no idea how much Jaxson costs a month. His food is 1200.00. His vent is 1000,00. And thats just the beginning!
Right now we are appealing his medical bed, it was denied because its not medically necessary for him. I have to laugh out loud to that. The kid has every medical diagnosis you can have, and has every piece of medical equipment possible in his room. But the bed is not medically necessary. I don't really complain about what I have to pay for. Its that I have to make phone calls constantly, and look through paperwork daily, to fix mistakes. I feel like the insurance should pay me a salary for doing their job. It is a LOT of time wasted!

So let me say this...I'm very, very grateful for the insurance that I have. Its one of the best, and they really do cover most things. I am hoping that when we move Jax will get on the waiver. Normal insurance just doesn't cover a multi-million dollar child. Now I know what some people are thinking, I've seen it a lot from our RR adoptive families. People scream that they adopt a child and want state money. So let me say right now that Arina gets nothing, nor will she ever get anything. She does not get medicaid, and she does not get social security, (neither does Jax), and I don't ever plan on asking for it. We brought her home, and we will take care of her. But children like Jax just slip through the system. We can just hope that someday these poor kids will be seen, and not overlooked.
I took him in on Wednesday because he was puffy, and I could tell he was retaining fluid again. He was up a pound from last month. We did a bunch of labs, and thought that his chronically low albumin was the problem again. When I looked up his labs that night, his albumin was normal! I wish for once this kid would just be straight forward! The only other thing I can think of is blood flow is getting tight again returning to his heart, causing him to be puffy. So for now we watch for fluid to start backing into his lungs, causing respiratory distress, and then increase his diuretics. He had an EEG Thursday, but I won't know the results until his neuro appointment on Monday.

He needs to behave because next weekend we are driving daddy down to California. We are super excited to go to the big birthday bash, and meet Addy for the first time!!

Last night some special visitors came to bring something to Jax!
It was Buzz and Woody, with Make a Wish, to bring Jax his official notice that his wish is being granted (although we already have our flight info :) Make a wish is such a great organization. If you have the funds, a small donation does great things. We can take Jax somewhere we would never be able to take him without their help. I still worry about getting him there and not missing any equipment we may need. My home care company has been great, and they are going to ship a bunch of stuff, including formula and supplies, to Give Kids the World, so its waiting for us and we don't have to pack it.
He was so excited to see his favorite characters!




A great ending to a stressful few weeks. And a reminder that life is really great. I'll I have to do is look in my sweet baby boys face. He only has smiles, for all he's been through, he smiles. He does not judge, he only loves!

22 comments:

Jessica said...

I don't know what it was, but seeing him those Mickey ears, I just started to sob! Jaxson is so deserving of this he is an amazing warrior! I love him so much, and am glad that make a wish is granting this sweet boys wish.

Zoey's mom said...

Finding our way... seems about all you can do sometimes,doesn't it?

I KNOW that Jax will qualify under the waiver and that food cost and diapers and all the rest will as well.He will be taken care of here.I promise.

We are super excited to see you guys.We are all going to have a blast together and will just be beyond ourselves to see and meet so many friends at Ella's party?Isn't this blog community amazing?And,because it is,we will help you through the rough patches and do the same as you have done for us as we have hit the bumps along the way.

The Buzz and Woody ... so cute.And your trip,what an incredible time you will all have.

Love to you all and,see you next week!!!

Kristen's mom said...

Darn. I hate that we all have to find our way. But you know what..we all do. I'm a bit jealous that I can't make it to the big Birthday Bash. I'm sorry about all the insurance stuff. We were lucky with Kristen's insurance and everything worked out.
That is so exciting, the whole Make A Wish thing. Have a safe trip to Cali and take lots of pictures.

Kristin said...

So cool make a wish comes to your house!
Our insurance sucks, but I'm too nervous about trying to change companies. I'm kicking myself I didn't get Max's sleep study done at the end of last year - oh well, I guess we have to meet our deductable sooner than later ;)

Amy @ OurScoop said...

I am a new reader and a mom of a 9 month old boy with Ds. Can I just say that I just love Jaxson! Not only is he adorable but he is such a fighter and an inspiration! I love him and don't even know him. His little round face makes me think of my little frankie. I'm so happy he gets to have his wish granted!!

I can't believe how much you have to fight for him everyday! You are an amazing Mom and Jaxson is so lucky you fight for him! Your love for him is so touching! Hang in there! Maybe I can meet you at one of these play groups before you move. It will be at my house in april.

LibsMommy said...

Keep on fighting strong Jax. God has blessed you with beautiful children and it's nice to seem them with smiles on their faces. I think I'm getting baby fever well down here babysitting my 11 month old nephew. I will see Kendal Sunday and that will seel the deal on baby fever haha.

I understand you about medical costs. Every time Lib started a med, which was often, the insurance never wanted to pay it. Heart med viagra to dilate the vessels to keep the blood pumping, according to the insurance company was "just inappropriate that a doctor would even prescribe a sexual intercourse drug to a 1 yr old".... Med to stop saliva production because of aspirating, and stopping breathing, nope not a necessary medication. Surgery to prolong life, "not necessary with as disabled as she is and in poor health and could cost possible millions to save her" Yep the company literally said that. Still have the paper.

The worst of it is the stress of not knowing am I going to be able to come up with the 1300 a month med to keep her heart pumping.... No parents should hear any of this at all!! Maybe more of us should really get together and fight these companies. I did press release after press release.

I am very glad you have had better luck with jax's company. Make a Wish is great great great. The airline usually charges per mile for oxygen so we could have never ever afforded that flight to disneyland. The flight attendants announced her trip. Offered us free drinks. It was such a nice experience. My close friend did give the kids the world and loved it so much. You are going to have so much fun. When are you going? Take so many piccys!!

Hugs and Love to you all :)

Alison said...

Great seeing you all with Buzz and Woody. I hope the wish is amazing.

Our Family said...

i don't even want to know what you have to go through with bills. ugh. we switched insurance and getting things back in order has been crappy. i don't know what we would do without medicaid and i am very thankful for it. i don't have to choose between paying bills and taking rachel to the doctor. i am afraid of moving and having it taken away. :(

Scrappy quilter said...

If anyone makes nasty comments you send them to me. How ridiculous that there are people out there who always do this. Even to this day people think we got money for adopting our 3 (23 years later). I mean, come on people, get a life.

You keep on fighting for your sweet man and forget the "nasties". I hope once you are in Cali everything will be taken care of and you can "rest" just a bit. Sending lots of hugs and love your way. Know that your blogging friends, those who truly care are cheering Jax on, praying much and loving you, him and your whole family. They are truly the ones that count. Hugs

Vivielle said...

I have no idea what life with a medically fragile child is like, but I just wanted to let you know that you're all in my thoughts and prayers,and I wish that the insurance could be straight forward for you.

Anyway, I love reading your blog and seeing pictures of the cuties! Jaxson is on my prayer list everyday too.

-Vivielle

The VW's said...

Hang in there Lacey! The stressors of insurance and Jax's issues are enormous....but in the end they are worth it! And, just think, soon you'll be in California and then on to Florida! Try to think past all this craziness that's bringing you down! Love all the pictures, especially the one of Jax with his mickey hat on! Adorable! Love and Hugs!!!

G-Zell said...

I work at a hospital and under all that red tape is so annoying and frustrating. I hope you are able to resolve the bed issue.

Jax is so cute and such a trooper just like you.

Keep on girlfriend , you are doing a fantastic job!

Cammie Heflin said...

It blows my mind that you have to pay anything out of pocket for Jax. I'm so thankful that you will be moving forward to Cali soon!! Can't wait to meet you guys either!!! Don't take it personally if Addy prefers Ray and your boys, she's completely and totally boy crazy!

Laura said...

I wish America had free health care like the UK, Australia and Canada (plus many more)
Love and best wishes

Roo's Mom said...

When Roo was very young and had many different meds and tons of doctor appointments, I used to say that our insurance provider offered quantity of life but not quality. They did thankfully cover her hospital expenses (most at least), meds, doctor visits etc., but would deny or greatly limit therapy visits. I can't begin to imagine the day in day out struggle with providers/billing offices, etc. when dealing with caring for (and of course loving!) a medically fragile child. As for people who have a problem with what you have to do, or with kids being adopted from overseas and needing medical assistance here, well that just speaks volumes about the humanity and compassion those people possess! You have a lovely, well-cared for family and I wish you all the best.

Holly said...

what an awesome surprise!
and I used to do medical billing in my former life...even from our side the insurance companies were a pain in the ass...I'm sorry you have to deal with all that, like you don't have enought to do?

Michelle said...

I hope you feel a small amount of relief getting to type it all out here. People who don't live it have no clue the mental strength it takes to get through so much CRAP everyday and that is aside from taking care of your precious angel. It is not as often now, but i recall so clear those first couple years just sitting on the phone all day. It is completely exhausting. I'm sending you a hug and prayer. Glad Jax is getting a wish and you can have something fun to think on.

Melissa said...

I feel sad that people are cruel enough that you even feel the need to publicly justify how and with what programs you support your child. In my opinion, disabled children benefits are there for a reason - to help support disabled children. I would not think of you differently for one second if you recieved them for Jax. Not my place to judge. The small amount it provides is not even a dent in the costs to provide for a medically fragile child. Not to mention the thousands of adults that are on disability for less disabling conditions than that. And honestly, if you revisit your position on it in the future, more power to you.

I'm so excited for your trip. You guys are going to have so much fun! And I really agree that Make a Wish is truly an incredible organization.

Kele@ said...

So happy for Jax and getting to meet Buzz and Woody, how wonderful for him and your family.
Hang in there Lacey, as H said, I know your move to Cali will mean positive things as far as the monies for Jax's care. So sorry you have to waste your time taking care of those issues, that could be time spent with the always smiling, amazing JAX!
Hugs to him and his beautiful little sister!!

Meghann said...

Jax is so cute and those pics made me cry I'm so excited for his wish! You're in my thoughts!

Lisa said...

Insurance is the worst. I'm taking a class in pharmacy school right now about the US Healthcare System and it's opened my eyes to how much needs to change. If you ever have free time (hilarious suggestion, I know) try and watch http://www.pbs.org/wgbh/pages/frontline/sickaroundtheworld/
It's very interesting and makes me think how much you, and other people all over the country, fret over medical bills for healthcare needs.

Junior said...

Love the pics of Jax with Buzz and Woody, so excited that he is getting his wish.