Back to my opinion- Insurance reform

With a baby on the way and the medical issues that we have encountered I am really interested in what is said about insurance, medical reform, and what people are saying about medical. Especially with new elections coming up, I really want to have my voice heard about the things that I feel are important.

A few weeks ago a man decided that it was in his best interest to rob a bank. He went into the bank, demanded ONE dollar and sat on the couch waiting for the police to come. Why? Because he was sick and needed to have health insurance. He knew he would get the care he needed in prison.

He was a hard working person his whole life. Not rich by any means. But he worked hard. His hard life left him in a hard place when the recession hit. He felt so desperate that he felt his only option was to rob a bank.

While I have never felt the desperation to rob a bank ( in reality.. in words maybe) but the fact that he felt so desperate for care he thought about ruining his life is a little staggering. It is also kind of sad.

A study posted a week or so ago said that they found the even with health insurance coverage many Americans find themselves in medical debt that they can't afford. They used Arizona for the study. They found that though many of the people are insured they still have medical debt that they can't pay OR that they delayed their medical care or didn't GET medical care for fear that they couldn't or can't pay for it.

They note that having a lapse in insurance put people at higher risk for medical debt. COBRA was put into place for that transition purpose but the cost of cobra is VERY costly and itself can cause people to go into more medical debt. Plus, cobra only pays your premium for the insurance, you are still responsible for your "normal" cost of usually 20 percent.

The big thing that sparked some fuel for me was a article yesterday in the Salt Lake Tribune. It was reporting that 4 out of the states current 5 insurance companies have posted margins WELL above their earnings a few years ago. Meaning that the non profit organizations have PROFITS. (Not sure how that works in the long scheme of things.) The article went on to state that they are required by law to have a fall back on the amount in "savings" but all the local insurance companies have way more than required.

Select Health is the LARGEST in Utah. In fact I wouldn't even be that far off as to say they would be considered a monopoly if people would look at it. They are reporting seven times the required amount and are sitting on 279.7 MILLION dollars. Mind you, this is the company that is 1) non profit, 2) provides all of the state insurance for uninsurable conditions and the high risk pool 3) is subsidized for programs like CHIP. They are also the ones that run IHC which runs the local children's hospitals and the programs that help with financial assistance.

With seven times the required amount they keep raising the premiums while paying out less in claims.

An example: When we moved from Arizona to Utah the Ebay plan we had was Select health. The cost of the cobra was 1200 a month. We paid for the highest plan that was equal to what we had in Arizona. It didn't have a deductible, it paid 100 percent of our claims. It also paid our pharmacy benefits. So even with a high monthly cost it was well worth it. 2 years later we on the exact same plan that was offered before, cost is 1300 and we now have a deductible ( considered the high deductible plan because we would met that deductible within a month depending on the month for Tyler. We would met that deductible within 3 months without any procedures for Tyler and just for his care) after the deductible we would be 100 percent covered.

Why would we pay 1300 a month to be fully covered? The honest answer: We can't afford to pay our percentage of the cost. That isn't to say we would have no food, or a place to live. If we paid all our monthly "normal" bills, we wouldn't be able to afford the full 20 percent without having a payment plan. With normal bills we are talking a set check already to IHC that we have paid for 6 years. This is just what would accumulate on my credit type of "can't afford." That bill would just keep getting higher and higher

While we are not above paying for our own health care costs, when is enough enough? Meaning why can't I buy a house and live a "normal" life without having to deny my child any kind of treatment? Why can my credit be trashed by said non profit organization because we are paying what we can on treatment that they say we don't get financial help.

What treatment am I denying you might ask? GREAT question. Because of Tyler's Cerebral palsy we have certain protocols that kids go through to give them the best possible chance of living a relatively "normal" life. Things like walking, talking etc that come usually only come with expensive therapy. At the beginning there are services that help. Early Intervention is a great service given by the Federal Government in any state. Sadly those end at 3. Then we are forced into the school system where the only guideline is to make them "functional." That is left up to us as the parents to go above and beyond functional. How? By getting them outside therapy. That means you have to use the said above insurance company to pay for said therapy on a condition that they don't see as rehabilitating but chronic. Therefore, only 12 visits a year are permitted. Because he will never be "cured" they don't find it a therapeutic investment. If we can't afford the 20 percent a visit how can we pay for the amount it would take to keep him going AFTER the 12 visits are fulfilled? Easy, we add it to our stack of ever mounting bills where we pay a month. And what we can't fully pay off we add to my credit which in turn causes more collection calls than you can imagine.

Tomorrow we will thankfully be getting some care from our local Shriner's hospital where we are going to bill that darn insurance company but Shriner's won't come after me for the portion that they won't pay. Then my son will not be denied something that will ease pain for him. And as his mother I don't have to not worry if I can afford it.

What are you thoughts? What have you found works for you and your family? How do you find yourself paying for those insurance bills?

Medicaid D

When we went to PCMC back in October for a follow up for Tyler's CP and last phenol injections, the Nurse Practitioner sent us down to the medicaid D office on the bottom floor. As we were going through possible future treatments she mentioned that it was unethical for her to ask us to have to pay 20 percent of the cost. His long term care would be to costly and it would make a family homeless. Without the treatment it wouldn't "kill" him so it isn't technically withholding treatment. It would just make his life a little easier. She said that we really needed to get secondary coverage so we could afford all the things that he is going to need.

Of course you leave a little frustrated knowing that you will never be able to take care of your child and frustrated that the system works the way it does. If he was more severe or had a trach there is a waiver. If we were poor there would be no issue. But the fact that we are middle of the road, middle class people we get to chose between a place to live and things that will make his life better.

After the appointment we went right down to the Medicaid D office. It was almost closing time but we decided to sit there and fill out the stack of paper work to start off the application instead of having to turn it in to another office and forget to do something. So I sat there with Tyler and filled it out. After we were done it was taken right down to the neurosurgeons office to have his nurse fill out papers. By the time we got back home his nurse had called. She filled out what she could and decided that she wanted Dr. Gooch to fill it out. So she nicely took up it there and that was all we had heard.

Thanksgiving came and the high and rush of the new baby and then Christmas. Soon after the new year as we were working on the stroller thing and I kept calling the social worker. He would never return my calls so I was annoying and called every day at 2 and left a message. For ONE full week. Then I called our nurse coordinator at our peds office. I NEVER have used a coordinator. I have always done it myself. Clint, the nurse coordinator, laughed and said our doc said the same thing. She will never call you. She does it herself. BUT I broke down and got some help. He called a few times and finally I got some random person who said someone would call me back in 3 weeks. I was like um NO.

After a few 3 hour phone calls our dude called us back from PCMC. He said that they had been sending it to a random Nancy Brown somewhere in Lehi. We got them looking at our application and the address they have is our current address but they were sending it someplace else. Once we got that fixed we got some extra paper work in the mail.

Last night as we were going through insurance coverage and deciding how much we could afford on the extra stuff for flex spending and what not we filled out the PILES of paper work. They don't cater the forms to kids so you spend an hour filling out stuff that is Not applicable. Then they ask you to compare your kid to other normal kids and tell them what is not "normal" for your kid. I was like "Um really." Your asking for all our health records to send it to a board of people to determine if he has a need for disability and you want me to remind myself that we suck.

Sweet... Lets do that.

So 2 pages later as to what we suck at and I am about done mentally. Emotionally I was done from the day before. Tears start flowing. Then MORE tears because I realize as we get older and older, that me as the mom are making the adjustments of stuff we didn't want to be doing at 5 and other people are telling us he isn't welcome because of those things.

Today, I have lots of appreciation for the kid that I do have and a realization that his life and his well being are a balance and that if others who should love him can't made the adaptation then I will do them for him and do them alone. If we can't get the disability then we go homeless or sell a car. We make his life easy for him. We didn't want to be changing diapers at 5 and we didn't want to be ordering strollers or wheelchairs and braces and being told we can't do something that will make his life easier.

So 30 more days and we MIGHT find out that our spend down a month is outrageous because again.. those darn middle class folks just are rolling in the secret Dough and we start over in our quest.

If you have applied for Medicaid D what advice do you have? Was your spend down NUTS? Are we barking up the wrong tree?

Is it really that hard?

In October we went to visit our Rehab doc. We ended up seeing her and the nurse practitioner. We generally see them through Shriners Cerebral Palsy clinic but they had been backed up and Dr. Gooch was not over there for a while. We hadn't had a follow up ( yep I know, bad mommy!) since our Phenol injections over the summer and knew we would be needing them again in the winter. Because we didn't get casts in the summer we really wanted them for the winter.

While we were there we talked with them about a baclofen trial, ( which we can't even talk about because we don't have extra coverage. So even though it would be WONDERFUL for the type of CP that Ty has they won't do it.) and we talked about looking into a stroller. An adaptive stroller that holds a little bit more than the 30 pounds the infant travel systems ( that we are STILL using) holds.

As soon as we were done we were sent downstairs to the medicaid office that PCMC has in the building. We filled out 7-10 pages of information, was sent to Dr. Walkers office to sign stuff saying that Tyler is INDEED disabled and that he did INDEED deserve to have medicaid D. ( Medicaid d is for disabled people and not traditional medicaid) The social worker there said it would be awhile before his application was processed but I should be getting papers in the mail.

Not long after we got home a rep from the wheelchair shop and they were working to get a stroller started for Tyler. They wanted to get it submitted before Jan.1st when our deductible starts over. We gave them our ideas of what we wanted and he said he was going to start working on it.

This was OCTOBER!

Fast forward to January. I called starting at 10 am on Tuesday. I left 4 messages on our case workers phone. 2 calls to the wheelchair shop and 2 calls to our case manager at the pediatricians office.

The wheelchair shop said that once they saw that some people really hated the stroller that we liked so he stopped going through the process. They didn't call us. I told him that I had emailed his PT and given her our other options. Apparently it wasn't passed on. I gave him the new information and that we really liked them. He had never heard of the brand we were looking at so he sent an email. We have to wait. Some more.

The average wait for a wheelchair is 9 months. Seriously! Nine months. I cannot be carrying Tyler for NINE more months.

Time for Controversial issues? Insurance {Please see disclaimer!}

5 Years ago we were expecting our first ( and so far ONLY) bundle of joy. It was unexpected. At the time I found out I was pregnant I was covered by my parents insurance. Which also meant that I was double covered.

Naively I thought that I would easily be able to switch to something. Dallas and I were making some life changes and we kept trying our hand at everything. We even applied for medicaid but we didn't qualify. Instead we ended up paying for a plan that was offered to students through the University of Utah ( YES!! I am a UTE.. Who knew!!)

This insurance plan was less than desirable but it would provide prenatal care and would leave us with a VERY small amount of money due as we started out our new life. We had a few weeks to wait to get on Dallas insurance but when that happened we would be double covered again and we wouldn't owe anymore than the small amount when we weren't double covered.

This of course was when everything was going to go as planned. I was going to have a baby the last day of my finals in December and life was going to be a fairy tale. Then came Sept. 1st!

D and I worked at the same place. He was laid off and 3 days later so was I. We were allowed to keep our insurance for 30 days. On the 21st of that month lightning struck and our world changed.

By the end of the month of September we had MAXED D's insurance policy and we were fighting with the U insurance because they weren't about to add the massive bill that we were asking them to add. We ended up only being able to afford cobra coverage for me and we got the Social Security disability insurance that is for babies born under 2 ( or three) pounds. ( I can't remember the exact amount.. but I think it is 2 pounds) Tyler was thankfully covered.

Coverage for Tyler has NEVER ever ever ever ( did I mention EVER) lapse from the day he was born to now. We have gone to great lengths to have him covered no matter what. Dallas and I have not gone without insurance and it has been done in GREAT lengths to do so.

When we chose to move to Arizona we had no idea the type of coverage they had for children with disabilities. Instead, we just paid more out of our check for GREAT insurance coverage. It was a while after we moved there that I met a women who had a child with CP and she gave me all the info for services. I was amazed and SHOCKED at the amount of services that were available to us.

Because we left after having been connected into Shriners I didn't have to use the CRS program. Which, in my opinion, was a HUGE blessing. CRS you are only allowed to use specific doctors and you are not able to pick what docs you want for specific specialties and only seen during specific days. Frankly, I was picky and I wanted specific docs for specific things that would work with our doctors in Utah. Plus we had great insurance through Dallas work. So the CRS and any long term care was ALL secondary. The reason we had GREAT insurance was because we paid way more out of pocket, opted for a PPO and got referrals for EVERYTHING. Also, unlike Utah, the idea of a monopoly is far less apparent. There was a children's hospital that we only had to go to ONCE!! Banner desert in which we had 2 docs, a private Eye guy, private ENT and a few docs at St. Joes. It wasn't a IHC or die type situation.

As Tyler got older and aged out of early intervention the type of services we got change a lot. We were given long term care and given rehabilitation services along with respite care and we also had regular therapy with no limits because we had Long term care services.

This is where it gets tricky. Utah mommies with special needs or even EXTRA needs look at that and think " WOW why the HECK did ya move? " And we think... we have NO idea. But soon after we left massive cuts were made to the system. That being said... some things about the system.

There was no case worker that would help you get all your services. I was the person who had to go out and get the services. I had to pick places to take him. We were on TONS of speech waiting lists. When we FINALLY got on one she moved and then we were stuck with therapy at 3 different locations. My respite was through one place, and my hab was through another. The services were split sometimes and I would have to be the one to make the payroll splits. I had to find my OWN respite people. I was the one that found all the therapist and all the stuff that we had.

It wasn't like it was just handed to you and you just got. You really did have to work for it. There were waiting lists all over for certain things and sometimes staying with a company you might get bumped up on the list just so they could get all 3 of your services. Ty had those services Tuesdays and Thursdays and we just LOADED him up.

We still used the respite care and used our HAB time for things like music therapy and a few sessions of water therapy. We also had a person who came in to work on specific things. Like OT goals or had to have an educational something thrown in there. When I finally got Corin I thought I had DIED and gone to heaven. But it took a lot of effort to find all those things. It wasn't just something you woke up and had. It took effort. A lot of it.

The decision to move came after 2 brain surgeries that were emergency and we ( Dallas and I) had no other support system. We were it. Dallas can't stay at the hospitals. Tyler needs me to be there. He is sick and in the PICU for his entire stay. When we get home, all carpets must be cleaned and the house bleached from head to toe. Doing it with no help ( aka a mom or a dad or a grandparent or sisters) makes for a VERY lonely road for us parents.

We didn't make the decision to come back to Utah FOR the insurance benefits but we also didn't think that because we were not ever without coverage finding health insurance would not be difficult. But we were wrong.

So along with the choice to come back to Utah came the praying, spiritual confirmation and some pretty amazing things happening to make us really be firm in our choice. It is something that I know we are judged on because we have sort of bad coverage here in Utah. The move and all of that went really well and we kept paying Cobra till we could get something else.

Our Cobra was the same plan that we were getting in Arizona except it was through the monopoly IHC. We had great coverage. We paid for that coverage with a price tag monthly of 1200 bucks. We were thankful for that option but it runs out. So we were even more thankful when D was offered a job with insurance.

This insurance coverage is bunk. It is SOO crappy compared to what we have had in the past INCLUDING the Cobra!! We pay outrageous amounts in prescriptions and all that jazz and then 20 percent of everything we have done. ( Which is "normal" and we know that. But when you are looking at 20 percent of 9 specialist, that is A LOT! Oh and what about those emergency brain surgeries that we haven't had yet! HOORAY! But we did have Gal bladder surgery.)

So, Yes. We Sure did walk away from coverage in Arizona ( that then got cut less than six months after we left) to come to Utah where we have 2 sets of grandparents 7 Aunts, 2 uncles and ample cousins to play with and people to help support us during our time of need. Especially when we are trying for another and knowing how well our pregnancy went last time we knew that having family around was the only way it would work.

We really felt that the spiritual experiences we had on choosing to move back was worth it at the time. We feel our doctors here are where we need to be right now. We feel we have the support system from most of those Aunts ( one uncle is FAR away) that Tyler would be taken care of if we needed more help to get one here safely.

Through the months of getting here we truly struggled to keep that Cobra coverage paid so that Tyler was covered. We went without a lot of needed items in order to make it work. That above mentioned support system wasn't exactly like I had envisioned but yet, another support system was there.

Until now we have never really gone without anything medical. We have always said no matter what it costs we will find the money somehow. That was until now. Tyler is in DESPERATE need for a adaptive stroller. He doesn't need a wheelchair because he doesn't want to sit down. The adaptive stroller are for the activities where he REALLY wants to go and I cant carry him any more. Wheeler farm. Perfect example. He walked 90 percent of the time, but those darn legs were so tired that sometimes he would need a ride or I would have to carry him. Hospitals, same thing.

We use Shriner's but they don't really do Strollers but do wheelchairs. So again. We will do what needs to be done. Somehow...

And, the kicker of all kicks....... We went to see the rehab doctor. It was a follow up on his phenol shots. He need them again and we were getting those set up. We were given some information for children with spastic legs like Tyler. It is called a baclofen pump. First he needs to have a baclofen trial. As we were discussing the options of the pump, the Nurse practitioner checked Ty's insurance status and found we have to pay 20 percent. The tone of the discussion changed.

If we have to pay out of pocket they won't do it. They say that because the cost of taking care of a child with a disability is so daunting for life long care that paying out of pocket isn't possible. I was CRUSHED. Ty deserves so much more than that. I told her I would pay whatever I had to but the discussion was over and we won't be getting to do the baclofen pump or trial until our insurance changes or we get covered by medicaid.

What do other people do? Why should Tyler be punished because we don't have a million dollars in the bank? Isn't that why we have children's networks?

So we wait. We sit and wait. We hope that something will come up and we will have all the things we can that will help him be a more functioning person.

*The thoughts expressed on this ( and some future posts) are not directed towards one person/family/group of people or the likes. It is experiences that have happened, are happening and will probably continue to happen. If you would like to comment please do so. It is a place of discussion. If you are offended please email me and I will be happy to explain or try and avoid conflict.*

** images are courtesy of Google Images**

Insurance and Denial of Care

We all know how much we LOVE insurance. Anyone who has any health conditions or extra needs soon find that there is a LOVE/HATE relationship with them. In a lot of cases insurance is the only way that we can all survive and keep our kids alive.

Back in November Dallas was sick. TWICE. I took him to the instacare in Riverton. It is a GREAT hospital and a great clinic and we LOVE the doctors there. Anyway, both times we went they gathered our co-pay and we got treated and left. We were not aware of any remaining balance. We paid an arm and a leg so we didn't have 20% and I never got a bill.

July came around and I got a letter. I had been sent to collections for $11 dollars. They didn't charge enough on our co pays so we owed ten dollars and they charged finance charges to this bill. I understand we owed and that didn't bother me.

What bothered me was the sentence in the last paragraph of the letter. It stated that if we have an account in collections with IHC ( Intermountain Health Care) we couldn't be seen for any non life threatening conditions. You see, life threatening conditions they would stabilize us and send us on our way. They are not required to do any more. But NON life threatening conditions would be things like his neurosurgeon visits, his eye exams ( so his retina's don't fall off and him go totally blind) his rehab doctor visits or his sleep doc. Basically any visit that isn't going to NOT kill him. This is including his pediatrician for well baby/child exams.

For 11 bucks I was SHOCKED ( I did pay) but I had a few questions to ask them. I asked them where we were suppose to go to get treatment if we couldn't go to an IHC facility. He said " You can always go to Las Vegas. They have a Children's hospital. You couldn't go to our facility because it is obvious you wouldn't pay." Um, 11 bucks makes you a dead beat. ( I didn't mention to them the 90 grand bill we have hidden away somewhere either.) I then asked if our Select Health ( which is OWNED by Intermountain Health Care) covered Las Vegas and he said " Why no. We don't cover out of state. You would have to pay cash."

In Utah there is only ONE children's hospital. Guess who runs it? HOW DID YOU KNOW! By golly it is IHC. It is also considered a children's miracle network hospital but you have to "qualify." and low and behold if you don't have medicaid you don't fall into the realm of qualifying for Miracle care.

In Arizona we had 3 choices of children's hospitals and care. We chose what is now Cardon Children's but was Banner Desert for our needs with Tyler. We went to St. Joes but RARELY. Yet that meant 3 options, three choices, three places we could get care. HERE, a bill you don't know about could get you no care.

Anyone else thing IHC is a monopoly? Guess who runs the state Medicaid D program.... IHC. Guess who runs the worker compensation insurance.... By Golly Select Health.

Are you REALLY in charge of YOUR health Care?

We see A LOT of doctors for Tyler. The course of action for a child with cerebral palsy really doesn't vary by TOO much. Meaning there are only a few things that you do as treatments.

Treatments depend on the Type of cerebral palsy that you have or are treating so the ones I know about is Spastic diplegia. Which is the type that Tyler has.

Most spastic kids are treated with Botox and then escalate to other things. We have gotten phenol and at some point we will need the next step.

Last time we were in the Physical Rehab docs office she said that they would like to do botox in a few spot on Ty's arms and phenol in his legs. She said " I need to go see what your insurance company will cover before we make a treatment plan."

RED FLAG: If our insurance doesn't cover botox ( which they require an appeal) then we can't treat him with that because our insurance won't cover it.

Even if it is the course of treatment he needs if the insurance decides they don't want to cover it the they don't. That means I am not in control of his health care.

Today, I had my own "insurance" issue.

I was taking the depo lupron shot and the pharmacy that provided it to my docs called last week and was setting up my next dose.

We went in today for that dose. And they were ready to give it to us. Instead we opted to be in control of our health care and between Dallas, our doc and Me we opted to not take he second shot.

When we got home, we got a call from the pharmacy and they said that they weren't going to be sending the second shot because we have a balance on the first shot. I explained that we have the rebate from the makers and it is a 85 dollar rebate leaving the bill 15. They wouldn't send my second shot for 15 dollars. How are they in control of me getting that shot. Is it NOT me and my doctor and MY body?

I was medically in menopause. They needed to keep me that way for another 3 months but if I can't afford it then I guess my body goes back to being sick. Incredibly sick.

It seems that the insurance company and the people who are determining our health care. Even if we are needing that service or not. We seem to just not be able to get it because we can't afford it. So should Tyler NOT be given botox because our insurance doesn't think it is a good idea but his Doctor does?

How are you in control when they are determining what they cover?

PS. according to the pharmacy that provides the shots to my doctor, the shot he had ready and drawn up for me "must have been a sample" and they have no idea where he got something to give me. Which means that the shot was 7 grand and no one knew where it came from. HMMMMM

seems a little odd?

*did you read that.... we didn't get #2 shot*

Health Care- The end of the world

I have taken a few days to write my thoughts on health care. ( Though it can be read HERE and HERE!) The reason I wanted to write it was because I feel a little misunderstood.

I am glad that it passed. Do I think it is the VERY BEST we could have? No I do not.

Some of the things that I don't like:

• I don't like that everyone should be required to buy insurance. It should still be a "choice." Some feel that it takes away their right to choose and in turn takes away their freedom.
• I don't like that Student loans were snuck in there in order to get a few "extra" Votes. I think that was sneaky and had no place in medical or health care reform.
• I don't like that taxes will go up though I am NOT sure how much we will really see the increase. ( does anyone know?) ( OK I looked it up.. Major increase for 200k income levels. I don't know anyone that makes that much. And slight increase for 88k and I again don't know THAT many people that make to much over that or even THAT.)
• I find it funny that you get taxed on Tanning and "cosmetic" stuff.
• And I don't' understand the Cadillac plans. So I am not sure if we fall into that but our insurance plan is REALLY a good plan but we pay a lot. But we do fall under the 20k per family I think we are OK.

Some of the things I like:

• FINALLY the pre existing clause and the denying of someone who HAS one of those conditions is gone for Children.
• I do like that it will also add in Adults but not until 2014. Why do I like that? I am fat and I have endometriosis. So therefore, according to the insurance company they won't insure me. ( yep I have that in writing!)
• I like that kids can stay on the insurance of the parents till they are 26.
• They can't cut the CHIP program and must maintain it. So Utah can no longer take money out of the CHIP program. ( which is a KIDS program) ( oh and medicaid program)
• I like the wellness program. That provide Immunizations and other preventative services for infants, kids and teens. It goes into effect in six months. So much can be prevented by these services.

Why this impacts me and my family so much and why I was and am glad that it passed: Ty has a pre existing condition. Ty is considered uninsurable. Without insurance we can not live the American Dream. We would be bankrupt and be the only homeless people who had Cobra. For us the cost of insurance literally makes us have to chose between a home or his care.

I was obviously not impressed with every part of the bill. I do feel that to be "American" I need to look at both sides and chose (hopefully prayerfully) what will be the best way for MY family and MY individual needs and go with what I feel is the correct thing for US.

And Just a few tidbits:

Our care for Tyler is dependant on what our insurance WILL cover, not what is BEST for him. So we don't think that his care will change.

No more people are going to go see a neurosurgeon than already do. So our wait won't change.

In Utah right now a wait on the genetics list is ten months. So again... things are already bad.

THERE is my take on health care!

Insurance is a crock of bull!

So we saw our pediatrician the other day. I was really glad we went because we accidentally threw away some of our sleeping meds for Tyler. We talked about our options as far as new docs go so we can get more meds etc. She offered to write the refill for us till we got into the docs office.

I didn't remember to bring the bottle so I called the office and the regular nurse was gone. So the other nurse wrote down the info on the bottle. (It is NOT a controlled substance so no harm.) Ty takes a MINUTE amount. So tiny. But the nurse forgot to put a quantity on it.

She called it into the Walgreen's and Dallas went to fill it up. When he got there they told him that insurance would only cover one month and the script was for almost a years worth. We pay for a copay for 10 bucks a month. The entire years worth is only 27 dollars. We pay 120 bucks a year when we could have paid 30 and gotten all of it.

Makes us wonder what else we could pay CHEAPER!

What stinks is we NEED that insurance.

Gearing up for the hunt

The economy is not fun right now. Several people that we know have been laid off in the last week or so. I can only imagine the anxiety. So, I am going to go test my anxiety and spend the day going around to health establishments and plead my skills to those who are hiring. There are so many people hiring but they take WEEKS to get back to you. I don't want WEEKS... look at my venipuncture skills NOW!!

So, wish me luck as I hit up blood banks, plasma centers and a few in between that I will find some thing good, that will enhance my skills and use my degree/certificate and help with that Darn Cobra!

So, if there is any one out there willing to hire a phlebotomist, please tell them I am experienced, a professional and I have a piece of paper that says in the state of Utah I can do it legally!! And pray that when I show off my knumchuck skills and my venipuncture skills I won't miss!

Oh and doesn't umblicial cord harvesting sound like an awesome tittle... I applied :)

Controversial topics: Health care and preemies

Recently with the health care debate comes some pretty hot topics about how other countries run health care. How other countries aren't doing such a hot job, or how other countries are just letting babies die.

Along with this debate an article was run recently on a UK site ( I do not know if it is just a blog or a newspaper) regarding the care of a premature infant and the government allowing it to "die" by refusing to treat the infant. Most of the comments are by people in the United States OUTRAGED by this type of "medical care." Most of them claiming it is barbaric and inhuman. But it seems ( in my opinion) some of the things that were overlooked were also very KEY points to WHY they did what they did.

* First though, I do sincerely give my condolences to the mother. It is a sad sad thing either way you look at it.*

Fact number one: The baby was born at 21 weeks and 5 days into her pregnancy. Meaning this child was WELL below the "average" of Age of viability. Many different places state that age of viability is 23-24 range, giving the statistic to be around 50 percent survival. The facts given of survival around 22 weeks of age is nearly extinct because there are not many cases involving fetuses born before 23 weeks and 1 day.

Fact #2: Medics allegedly told her that they would have tried to save the baby if he had been born two days later, at 22 weeks.

The difference in ONE DAY in the womb at babies this early is HUGE. It truly is the difference between night and day. And sometimes it is the difference between life and death, disability and long term issues. So much happens in that time frame that make a child more able to be born and given a fighting chance.

Fact #3; They were following their national guidelines set forth by the government.
This is where people seem to think that it is just with nationalized health care. (NHS) when in fact it is not. 4 years ago when we were in labor with our extremely premature infant we were in a hospital that did not have a sick baby nursery let alone a level 3 NICU. We were told that they would call maternal and fetal life flight but if the baby was born 500 grams or less they would not be able to do anything. That was in the UNITED STATES. Not a nationalized health care system. We were lucky that Ty was born at 580 grams. But I know many people who did not make it to that lucky 24 weeks.

After looking at many of the links from the article given above I found MANY different things on the guidelines set forth. I don't know where to find the guidelines for the United states but I am still looking.

Some things I found interesting:

First Article:

"The guidelines were clear: no baby below 22 weeks gestation should be resuscitated.

If a child was born between 22 and 23 weeks into pregnancy it should not be standard practice to offer medical intervention, which should only be given if parents requested it, and following a through discussion about the likely outcomes, the document said."

"The latest major study on survival of premature babies shows that at 23 weeks, just 16 per cent will survive - a statistic which has barely changed in a decade.

Given such poor odds, the use of procedures like ventilation on babies of even lower gestation, who have poorly developed lungs and weak major organs, can amount to cruel "experimentation" pediatricians and ethicist say.

They also point out that of all babies born before 26 weeks, 40 per cent will have significant disabilities, such as cerebral palsy - a percentage which increases with prematurity."

Sometimes even at a later gestation I wondered what was experimentation and how well did they know the long term effects of what they were doing. Yes, I am glad they were able to save my child. The implications of long term effects were there and we knew what we could be facing. But the day to day stresses of living with and providing the best care for Tyler is VERY hard on a person ( including Tyler.)


The second article had MANY good points as well. But they were very similar to the first one. While I can't imagine the pain of losing a child I can't imagine 21 weeks and trying to save my child. I cant' imagine telling someone to NOT save my child. Knowing how hard it was to see my child at 25 weeks BARELY formed what would it be for those babies who are no where near developmentally ready to be out of the womb.

I do not think that the united states guidelines are much different from the UK. They have a higher ranking according to WHO in the health care rankings. Their care is not that far from our own. How can we realistically think that they wouldn't be providing better or similar care?

Summing it all up, I am not sure what is best. I am not really sure what I would do? I think the propaganda against others health system to make the US look in superior is NOT the best representation either.

Nancy- Care: My insurance OPTION!

With all the insurance and health care reform debate I thought I would give MY option and open it up for debate.


This is what I *PURPOSE*

I would like the government ( or anyone for that matter) to let me PURCHASE my own plan that is AFFORDABLE with no preexisting clause. * For the record, for the past 4 years Tyler, Dallas and I have been insured one way or another so TECHNICALLY nothing should be considered preexisting while applying for current plans.)

By affordable I mean around 5 or 6 hundred bucks a month. Have the fee be on a sliding scale so that everyone is paying into the program that opts to BUY health insurance can. I am not asking that "my" health insurance be paid for by anyone else other than me but give me an option.


This is my issue:

You are all saying don't let the government take over. But my next option is to make the LEAST amount of money possible to get medicaid which you are ALREADY pay for. Wouldn't you rather that there is an option that we are paying instead of YOU paying.

A few conversations I have had this week!

I have had a few very interesting conversations the last few weeks about education and the "right" place to place Tyler for Preschool. It is just preschool and I know he won't learn how to do times tables or even read in preschool so I shouldn't be to concerned. WRONG!? Though I know that he won't be solving world peace of even the health care reform problem it is important to get him the in the right place to get the right services so that when he is 8 he can solve those problems (Sarcasm noted!)

When we moved to Arizona we were not in the school system so Early intervention was all I had to set up. It was a maze and once I figured out how it all worked and was tapped into resources the maze was not so bad. The services were pretty good and when cuts where made I wanted to speak up but nothing was cut of ours and we knew we would have it much worse someplace else.

Once we got into a place we liked we stuck with it. We have been at Coester Cares for over a year and a half. We like it. We have gotten so that Ty is doing so well with his therapist and never cries. Though Jackie and him have stubborn fights a lot! They are a awesome support system for me and a great team for Tyler.

Arizona long term care was amazing and the transition into preschool was pretty uneventful and we learned a lot for year number 2. First year of preschool was what we felt a trial run for this year. We looked at other options and thought of the school for blind children but made a different choice and got him in a different class. The class this year is amazing. It is exactly what he needs.

So our choice to move to Utah was not as abrupt as it seems. We had jokingly talked about, prayed about and then it was presented and we jumped at the chance. Yes we are moving quickly, but most everything is falling into place.

One of my major responsibilities is to get Ty in school and figure out what services and where to get them is my "realm." Doctors are hopefully going to be our old favorites: Marissa, Tim, Dr. Walker, and Dr. Larsen. We are adding Dr. Gooch and possibly a developmental ped and MAYBE a neurologist is the above favorite of Tim and Marissa wont' drug our child!

Those were the east set up. Its been the SCHOOL that has been the hardest. Conversations have gone like this:

CALL one:

Me: Hi, we are moving from another state and need to know where in the district we will be attending.
Lady: What grade?
Me: Preschool. He needs the special needs preschool and I am not sure what school has them and I would like to know what school we would be possibly attending.
Lady: Um yeah we don't give out information like that.
Me: Um could you transfer me to the preschool department.
No one was there to talk to. I left a message.

Message was returned the other day.

Frank: What information were you looking for?
Me: What type of services are offered in class?
Frank: well you know he has to qualify right?
Me: yes we are currently getting services here in Arizona.
Frank: Do you know what his services are called
Me: Yes he gets all of them OT,PT, Speech and vision and music
Frank: Oh yeah he would get services.
Me: where is the preschool closest to us?
Frank : I don't give out addresses. We don't know you.
Me: Um I just want to google the vicinity so I know how far we are busing or taking him because I would like to look at the school for the Blind.
Frank: You know you have to qualify for that?
Me: Yes. Do you know what the qualification's are?
Frank: bad vision.


Today my conversation went like this:

Blind lady: I heard you wanted to know about preschool.
Me: Yes. My son needs vision services
Blind Lady: How do you know?
Me: He is almost legally blind and has nystagmus and ROP
Blind lady: Oh yeah.
Blind lady: Do you know your district
Me: yes, they have a current IEP and have all the stuff they need to tell us what we need but I want to know what services you have
Blind Lady: Oh well we won't tell you what they are until we know what we can give you.
Me: Where is the preschool.
Blind lady: We cant' give you our location.

I said thank you.... and hung up.

Coming from an education family, I fully plan to support public education. I also know that as a parent that the teachers want you to be involved. I love to know what he does in school so we can talk about it with him and ask him questions even if he doesn't answer us back. WE excitedly get into his book bag EVERY DAY to see what is in there. I want him to succeed and want him to have the best possible chance to do that. But just tell me the address so I know if I am busing my child 45 minutes in rush hour traffic that may or may not turn into 2 hours.

I am not going to stalk and steal a baby with issues. I have one of those. I just want him to go to school and be in the right place for him.

I have felt dumber by talking to some of these people!

So, what we have learned. Ty will be attending the elementary just down the street. They just built it and it is brand new. Miss Holly is the teacher there. ( I dragged it out of the guy when he realized that I knew what we needed etc) The blind school may still be an option but we are going to be looking at if he gets 4 days and how much speech. Speech is HUGE!!

Other conversations have been about health care that I will leave to YET another post!

Moral of the story... Don't ask questions about your child's education. They might think you are a stalker!

Socialized Medicine, Heath care reform and the works.

*For the record, I am NOT totally sold on Obamacare. Nor am I sold on socialized medicine. I do think that there is a desperate need for some kind of health care reform.*
I listen to a lot of Talk radio. My mom is smiling and laughing at me right now. But it is true. I don't love Glenn Beck but he has a lot of ideas. Not always good ones and he is a little over the top. But there are so many others down here that I listen to. Anyway, all the rage is the "Obamacare" and the down side of it. I like the local ones, but find myself disagreeing with some but not all of the ideas of the plan or several plans.

That said, I have a lot of research to do and lots of pros and cons but here are my thoughts..

Socialized medicine is put down A LOT. Meaning that while living in an apartment with 3 Canadians at one point in my college career, they got amazing health care in Canada. They had everything the needed while living there and didn't have anything bad to say about it. While I don't always agree with socialized medicine and hear all the time that preemies are being sent to the states to get care, I don't agree with that. American NICU'S and Canadian care is not the worst thing. They still get great care there. America isn't the highest in Health care and saving babies

I watched the documentary on socialized medicine from Michael Moore and frankly we didn't do those people justice either. They were able to walk across the border or row a boat for that matter and get the care they needed.

I hear all the time that people are waiting YEARS for a CT scan. Yet if Ty went in in shunt malfunction ( a life and death situation) I am sure that care will be given. I don't think that he will wait months of years to get something that is life threatening. If Dallas went into his primary care doc and had to have a MRI for a non life threatening situation I am sure he would be waiting months.

THAT said, to get an appointment with a developmental pediatrician, with PRIVATE insurance in the great state of ARIZONA and last I checked the United States of America, it takes 9-12 months. That is right. He can't get in to see one for almost a year. There is no difference. It wouldn't make a darn difference if we were in socialized medicine or not. No more or no less would be seeing this doctor with socialized medicine. For Ty to get an appointment with the lady that does his botox it took 9 months to get. So again, how is it that any different than socialized medicine?

We are now looking at private insurance. Knowing we will have to pay out over 700 dollars a month we still embarked on the journey. Sadly Cerebral Palsy is a condition that is one of the most expensive disabilities. Those who suffer from it need on going therapy of some sort to keep their body functioning. Therefore we are having a hard time finding someone to insure us privately. We have had no lapse in coverage since the day he was born, it is not considered preexisting because of a bill of HIPPA passed by President Bush ( the first one I think?) so the idea that we can't cover our family because we will never pay in as much as they pay out is stupid.

We are part of a "socialized medicine" already. It is called Medicaid, medicare or whatever you state wants to call poor people insurance or old people insurance. Its a broken system. Ty is on State insurance in Arizona but in order to be on medicaid in a different state ( the state we are moving to) a family of 5 must make UNDER 700 dollars a month. Yes that is right 700 a month for a FAMILY OF 5. We are a family of 3. Can you imagine making less than 700 a month? In order to keep him covered we have to do something.

Is Obamacare the answer? Maybe, maybe not. But is leaving someone uninsurable the answer either. He deserves care to. We are not even asking it be free we are asking that it is made obtainable. We need something we can afford. We can't afford to pay 700 for me and Dallas to be insured and a spend down program of 400 for Tyler. That isn't "fair."

We are paying taxes, we are paying into a broken system as well. What do we do?

Some say that in Obamacare Tyler wouldn't have been "saved"? While that may or may not be the case he is here now and he is a contributing member of society in some way. Without some kind of reform in the system we have, you are telling me that he is not a productive or contributing member of society.

We are not asking for a handout. We are not asking it to be free. We are ASKING to pay for it by applying for health care coverage. The current system is denying us. They are saying no. If there was something we could do instead we would do it.

SIDE NOTE: There are a lot of people out there that get medicaid while having babies and are saying no to socialized medicine. Did it ever DAWN on any of you that medicaid IS socialized or government ran insurance? Those of you with preemies who are totally against Medicaid, I recall MANY of you getting SSI and medicaid while they were young and even up through age 2, again, GOVERNMENT ran insurance. You can't say you don't want it when you used it. Maybe saying reform is a better idea?

Also the clause of them coming in and telling you how to parent: they do that if you are in the system any way. If you are getting early intervention services there is someone coming into your home every six months telling you if your kid is delayed, what services they will be sending to you, what things you should be doing. I don' think in real life they would be sending out someone every day to your house just to tell you how to parent, but I do think if you are using the government health care and you just racked up a million dollar bill they might be stopping by. Oh well. I would rather them do that the me try and pay out the money that I can't afford.

That is my rant...

I thought the roller coaster was over?

A phrase frequently used in the NICU was that it was a Roller coaster. Some days were HIGH HIGH and others low low. Some days were just OK and others were fine. You didn't have the drastic changes in emotions all the time. Some days were so "OK" that it was "no big deal." The closer we got to the end of our stay the "no big deal" days were more and more frequent.

Often during the crazy time I really wanted to get off the ride. Like at the amusement park, as you are heading up knowing that the drop is coming, the anticipation is a killer. What are you anticipating? Was it the drop? Was it knowing at some point that there would be a drop? I don't know. I don't know what makes the anxiety flow.

It has been almost 4 years into our journey. ( So crazy to think 4 years) And most days the journey is fine. It is " no big deal." But with all the changes coming up the roller coaster ride has taken a jolting turn. What am I anticipating? What is making me anxious? What if I want off?

Dallas is not working for a company so the safety net of a nice set of insurance benefits is running HIGH on our list of anxiety. Ty HAS to have insurance. A lapse in insurance could great impact us for the rest of our lives. Because of his Cerebral Palsy and hydrocephalus a lapse in Insurance could result in him being considered uninsurable. Those conditions alone make insurance companies run for the hills. But without insurance we would surely drowned in the expense of an unforeseen shunt revision and even the day to day care of a child with Cerebral palsy. His botox, speech, physical therapy and occupational therapy, most of which is out of pocket expenses as seeing insurance companies don't always agree that maintaining a functioning body is applicable to children with CP, are sure to cost way more than anyone is able to make even without working on their own.

The long term care system in Arizona, though very broken, is a FAR better cry than what we are looking at in Utah. Because we do have a job the idea that we DO have some sort of income crosses us out for medicaid. Because of that insurance has to be done privately or through a company that you work for. Again, causing a stressor. What do you do? We are even looking at me going to work for a few companies that I worked for before in order to get insurance benefits for the family. I am happy to do so. I am just overwhelmed with the idea that we will yet again be facing no long term care options. We have had it REALLY good in Arizona. A broken system gave us insurance, Therapy ( of all varieties) and respite providers. While the respite was nice I am fine with taking care of Tyler. It is the other necessities of insurance and therapy that plaque my thoughts.

Though I am sad to be leaving those behind my biggest concern is getting him into some sort of speech therapy. Speech is a HUGE concern for all of us. A lot of insurance companies won't provide services to anyone who is just delayed. There has to be a reason. Like a stroke, or brain injury. So unless someone is nice enough to put his speech delay is from a brain injury then we are just out. We have been pointed to a few free ( ok one) free service but there is a waiting list. This next week we are looking at Shriners and what the school offers.

Though we are leaving behind some of his therapies, we are gaining family. Since Ty doesn't have any siblings and with no plans in the works FOR one then cousins, aunts and grandparents, we hope, are going to help us with some interaction on a pretty regular basis. That he can learn how to model those that are doing the things we want him to be doing.

We are looking at what the deaf and blind school has to offer. Though the actual school is to far away for him to be bused I do feel that they might have some services that will be of benefit.

One of the major stressors that invoked this lovely downer topped with upper was a call from a speech therapist that treats kids with Apraxia. She was given Tyler's information and based on his most recent evaluation and what he is doing right now she was giving us a "guesstimate" of what we have to look forward to! She said that general speaking kids that are not talking by 5 can still talk but generally have unintelligible speech. Meaning no one but their care givers can understand them. Causing "normal" society functioning to not be very... um easy. There are a lot of communicating devices that we can try but given that we are moving the testing for it isn't going to be as available.

While we feel as his parents that he will talk and that getting him to family and friends is the best thing we can offer. If we do that and do what we feel is right for him that he will be blessed.

What is really hard is how much as a parent we desire him to be the best him and someone who is telling us he won't do certain things makes you a the deficit. For example: Dallas and Tyler were swimming in the pool. We are trying to get him to learn new words or sounds. It seems that his mouth tries to form it and nothing come out. Its heart breaking to NEVER hear dad, or I love you. Yet in his own way we KNOW he tells us that he loves us. He signs Dad. He signs and loves both of us so much. It still doesn't make that heartstrings hurt less.

"The best and most beautiful things in the world cannot be seen, nor touched ... but are felt in the heart." Helen Keller. She said it perfect. At this point we want him to be exposed to EVERYTHING. Take it all in. Adapt it to his needs and hope in his sweet, larger than life way he KNOWS we love him.


He KNOWS... He knows he is loved. And he IS loved.

I guess after a down day yesterday and a GREAT day today we won't know know what the future will bring and what services we get BUT we do know that in his Larger than life way we want him to be LOVED and feel loved.

So, for now we are coasting. For now the up and down is gone. We can do it! I will stay on the roller coaster ride.. If only for a while!

Preemie post coming up...... INSURANCE and cost of prematurity

I started my blog for many reasons. I have had a blog since the day that Tyler was born. I updated it regulary. It was something that was easy to have and easy to keep updated. It has seen been closed but I have saved the updates and can go back to almost any given day and read what happened that day while in the NICU.
After a bit I changed to a wordpress blog and documented for a long time before coming over here. Blogging is therapeutic for me. It also allows others ( like my mom) and our family from far away to keep track of us. It was also a way for me to put our story out there. To met and find other moms in the same boat and to have questions answered.

As time went on that is how I have kept it. As a way to share, information, allow my mom ( and Nicky) to stalk me and yet still have the therapeutic part of blogging out there. Having a blog also opens you up to criticism. I don't mind criticism and a nice discussion of opinions.

That said (please be kind) a few of my preemie groups are up in arms about funds and donations given to certain people. While I don't have a problem with people donating. ( it is their money after all) I do have a problem when I feel like some information never gets out to the people who are donating.

So, I wanted to tell a little story about our Financial difficulties then and now with having a child born as a micro-preemie and now having a child with special needs.

We found out we were pregnant around May. I had insurance and was covered 100 percent. I was double covered. There were no out of pocket expenses. Then we had a "life change" and suddenly we found ourselves in a position where Dallas was not employed and I was losing my insurance. No insurance company that we could buy would cover me because I was all ready pregnant. Dallas got a job. I applied for medicaid. We were denied over about 50 bucks a month. So we just went with what we could. I was a student and so I bought the health insurance plan offered to students. It would cover a pregnancy with pretty minimal cost.

We were poor, struggling, students/newlyweds. We were not expecting what we got. Dallas had a good job and I was able to get a job at the same place. I went into work one day and was told that our department was downsizing. I was the last one hired. I was layed off. I was ok, because Dallas still had his job and I was in school so we still had my insurance and his insurance. A week later he was layed off. This was the first part of September 2005. The company we were working with kindly said they would allow us to keep our insurance till October 1st and then we were on our own or paying cobra. We still felt we were fine because I was only 21 weeks pregnant and covered under the insurance at school. Things were fine.. Things were fine.

Fast forward to the last weeks of September. September 19th, I woke up that night not feeling well. Sept 20th my doc said take it easy, it was nothing. Sept. 21st at 1:24am it was something. A 1 lb 11 oz 13 inch long little boy. No bigger than a ruler and skinnier than a pencil. And we owed 20 percent.

Ty was lifeflighted to LDS hospital, stablizied and this is where we started our medical journey. Once we were dropped from the insurance from Dallas job we were kinda in a panic. But something that doesn't come out often in reading about micro preemies is that babies born under a certain weight automatically qualify for social security. Social security guarantees these babies medicaid. Fact if the matter is.. these people will get their money. There is no way anyone can pay 20 percent of what it costs to keep a 25 weeker alive. There is no way.

This was written October 2. 2005:
Today we got the first "bill" for any of Tyler's hospital fees. This bill was for his Life Flight from Alta View Hospital (Sandy, Utah) to LDS Hospital (Downtown SLC). The bill is for: $9,009.14!!!!! Now this statement says "do not pay this amount" so I am assuming this is the statement before they bill the insurance company. So I don't think we will be asked to pay this amount, but we will see...


This was not for any real service JUST getting him to the other hospital safely.
While at the hospital for Tyler we received level 4 NICU care. The list, not including procedures like PIC lines and transfusions because there were to many to count in those first few days. But major procedures.

1. PDA heart surgery
2. Head Ultrasounds
3. ventilation 93 days worth
4. life flight transfer by helicopter and life flight transfer to PCMC by ambulance
5. Reservoir placement
6. multiple eye exams followed by surgery on his eyes

All of the procedures the doc charges you, the anesthesiologist charges, the hospital charges then Ty's day to day care. So his diapers, clothes, food, meds etc.

After Insurance was over in October we had nothing. Hence when the medicaid kicked in we were ecstatic. We knew that Ty would be taken care of. We still had multiple visits from the business managers there and billing people but there was nothing we could do. Those bills would reach over a million dollars.

Our cost and medical drowning came from me. I was not covered by medicaid. I was not covered by anything but cobra and my meager health insurance plan by the U. They don't cover some of the things that I had to do. We were able to pay for cobra but again you have a portion of that that you have to pay along with the premiums.

For me alone we owe ( and still do owe) somewhere around the 50-70 k mark. I still get bills that the U insurance didn't cover that we didn't know about. I had to have plastic surgery to close my c section, I had a wound vacuum keeping it closed. I had to have nursing care. I had to have a breast pump for Tyler. We weren't made of that kind of money.

What we have found though was that we could let the medical bill eat us. We needed to live. Our day to day living expenses are what caused our financial woes. Dallas was not working. He had been laid off. We were living off what credit cards we had and what we could bring in. Until I had my C section fixed I couldn't work. But I got a job right before Tyler came home to help us make ends meet. Dallas was doing contract work after contract work and we were staying afloat but barely. We would pay off part of our credit card and have to use it again just to put food on our table. We were paying for Gas to get to the hospital 2 or three times a day. That is where we saw our expenses coming from.

As time went on and we had Tyler home we had other expenses. Because he got medicaid for the first year do to the above mentioned social security our formula was covered by WIC. Dallas got a new job and we had great insurance where we paid 20 percent. BUT when medicaid ended for Tyler so did the "free" health care for him. The stuff we paid or have been billed for included shunt placement, shunt revision and 2 skull reconstructions. The last reconstruction alone was 90 k. 20% percent of that is a lot. That is just the surgeons portion. We owe for scans taken after his reconstruction because Dallas had a new job in Arizona so we were no longer covered.

Before moving to Arizona we put together our debt. It was large. It had ruined our ability to purchase anything on credit. This is including a house or a car. We have had me work to pay off some of the debt but we are no where near being out of medical debt. We will have it forever. BUT the day to day living is not like it was then. We don't' worry about that medical debt. We don't worry about that doctor who is still pursuing us after 4 years. Why? Because we can't. There is no way to pay it off.

Moving to Arizona was a hard move for me. Our medical insurance here is SOOO much better than Dallas and I could ever ask for. His work insurance, though an HMO, has been great. As long as I make all the necessary calls and make sure all the needed paperwork is done ahead of time we are fine. We pay extra to have the upgraded insurance instead of getting it in the check each paycheck. It has helped us a lot to have it covered. We have yet to have to pay more than our co pays.

For Tyler, because of his diagnosis of Cerebral Palsy and his vision we are able to get DDD insurance here. Which is basically medicaid. So Tyler is double covered. Why? Well at some point without medicaid children will cap out. He will cap out. He will have a max payout at some point. Brain surgery gets expensive. We may go YEARS without one and then do 2 in a year, like this year. It helps him get services like therapy that usually gets denied in an HMO.

HMO's don't think that water therapy or PT in general is beneficial to a child with cerebral palsy because it is a life long condition. But with his DDD services we do get them and we get what we need. Along with his DDD services we get respite care and other care for him.

So why the long post?

While people do need help in their day to day living with children with special needs, what you read on the Internet is not always what it is made out to be. Yes, financially it has ruined many people. Us included. But we made the sacrifice and moved to a state that allowed us to have better insurance and better state insurance.

We save babies at what cost? It doesn't stop when they walk out of the NICU. It doesn't stop when they are suppose to have caught up by age 2. 9 specialist for one small little boy doesn't stop if we didn't have insurance. I would be homeless to give him that care. There has to be something that works in this country.

Those living in socialistic health care countries don't have worse care. Is it the best for us? People say that they have to wait hours and hours for care in these countries, We waited for 9 hours for something that could have potentially been life threatening. Is it really "better" care because we are here.

I think it is great that people are able to get donations and feel the need to ask for them. I don't feel the need to. If someone like The Doctors want to give me 40 k I would gladly accept it and pay off what is left of our debt so we can keep moving forward. But I feel that Ty's story and his struggles and most importantly his triumphs are ours to share without reward.

Someone once made the comment ( who has a 24 weeker) that everyone should have a Tyler. And that is how I feel. I want to share him with the world. I want to be a advocate for children like him. I want to be a support system for the mother and those going through the NICU. Not asking and begging for help.

We love our son and we are and would go through financial "ruin" if you will to have him hear with us. We would and will continue to do all we can to afford his care and get him the best.

That is my soap box.. Get all the facts. Get all the information you can before sending money to people you read about over the Internet. If you feel inclined to donate, donate to the local NICU. Give them gas cards to give to the parents, give food to the food bank, make care packages. Those little things would have helped our financial situation way more than anything.

Soap box over... if you made it this far.. you get a cookie!

Taking things out of Context

A little over 3 years ago I was 25 weeks and 3 days pregnant. I was in labor. We were poor. Dallas and I had just gotten laid off from the same company. We had gotten to keep our insurance till October 1st. Tyler came and we had no idea how we were going to afford it.

We had purchased a small insurance plan from the University of Utah because I was a student there. The plan was just to cover my prenatal visits. It didn't cover catastrophic deliveries like we had.

Tyler was born. He was not breathing. He needed more care than Alta View could give. He was life flighted to LDS hospital. The life flight was really expensive. Like 10 grand grand for a 3 minute flight. He was on a ventilator. He was in a level 3 NICU. One on one nursing care.

I had a c section. I had blood clots under it. I had to have one on one nursing care to get the giant wound to close. I then went on a Wound vacuum. All the while we had no insurance.

In October Tyler was life flighted AGAIN to PCMC. He was treated for Hydrocephalus. He had his first of several brain surgeries. He was still on a ventilator. He still had one on one nursing.

In November I had surgery to close the wound that was caused as a result of the emergency birth. Ty was still in the NICU. He had endured eye surgery and was finally of a ventilator. He was still in a Level 3 NICU. He was sick. We were still unemployed.

The bills kept coming in.

Ty got medicaid finally. We got 30 dollars a month because he was considered institutionalized. The medicaid was for one year. It only covered Tyler.

In December we finally get our baby home. 93 days in a level 3 nursery. 3 months of bills. Open heart surgery, brain surgery and eye surgery in those 93 days. Countless brain scans, ultrasounds, meds, TPN, ventalators, cpap and oxygen. Diapers were being used, wipes, binkies, hand sanitizer, blankets etc. All things we paid for.

In February we were back in for surgery. A skull reconstruction. A neurosurgeon, pediatric anesthesiologist, pediatric radiologist and nursing care. This included a 3 day PICU stay and a 3 day Infant unit stay. Meds, diapers etc were all charged to US!

April we were in the ER at Cottonwood hospital then transported AGAIN to PCMC. Emergency brain surgery for Tyler. This included CT scans, tests to figure out what was wrong, a stay at the hospital. Meds, diapers and we were back on oxygen.

We had a month of CT scans, ER visits, Daily doc visits because he was crying all the time. We had meds we filled, appointments to go to and our own doctor appointments to attend to because of the stress we were under.

May we had yet another brain surgery. Including more scans, xrays, docs, anesthesia, radiologists and another stay at the hospital.

From the day we were sent home we had weekly weight checks, visits and a myriad of other follow up appointments. All bill to us in some way. Things medicaid didn't pay for. Things that we couldn't pay for.

Ty loses his medicaid. We still have speciality formula to buy. He is still underweight. We make to much money for help. We still get all the above. We can't pay for it. We know that. We do the best we can.

Tyler then has to have Brain surgery again. A total skull reconstruction. Another PICU stay. Another hospital bill. Another set of bills to come to us.

We get synagis for 2 years. That is 3 grand a shot. Ty gets 2 of them a month. We have 3 specialist visits a month. We pay out of pocket for Physical therapy because early intervention said we didn't qualify. We paid co pays for 3 visits a week for several months. We have gas to pay to get to these specialist.

We got pneumonia 2 times.

We moved to a new state. We had to wait to move Tyler and I till we were cleared to move by our neurosurgeon.

This doesn't include all the other things that come with having a sick kid. We didn't make a lot of money in Utah. We chose to not pay the bills from the docs and hospitals. We hired a lawyer because of the debt we incurred. We were filing for bankruptcy. We made to much money. We were stuck paying of the bills. WE ARE STILL STUCK WITH THE BILLS.

We still do care for Tyler. We still pay out of pocket for things.

I don't have a problem with people getting donations from other people. I don't have a problem with fundraisers happening to help get things paid for. I don't mind. I have participated. My sister had fundraisers for a kidney transplant. We have had to get help from others.

I don't mind people blogging about their experience. ( um.. Hi! I have a blog) A lot of the time I can finally relate to someone. I get hate mail. I get comments that I am Negative. I get emails stating I have not done enough for my son.

I get taken out of context and when asking if someone has seen or tried for a waiver for medicaid I get people saying I don't get what it is like to have a sick kid. I get people telling me I am insensitive. I get people saying that I am mean.

I might be walking in your shoes. I do walk in my own and you don't walk in them. I read and try to understand where you are coming from. I am sorry it was taken in the wrong way. I don't think you are not doing all you can. I welcome new treatments, insurance advice and other things. I am sorry you thought I was being rude.

I won't be donating. I won't be giving them money. I will pray for them. Their lack of compassion for others and knowing that sometimes what they say are being construed as rude or uncompassionate amazes me. I hope they realize that a comment or a suggestions or even a small amount of misunderstanding is not meant as you are not doing what you can. Why won't I donate? I want to. I do want to. I won't because compassion is not always returned. Instead things are taken out of context and mean things from your readers are thrown at me when they have not seen or heard my whole story either.

Heart Broken

I am just sick tonight. Not physically sick but heart sick. As you all know we started water therapy and have been attending 3 days a week. When we first got the approval it was for 60 visits. We got there today and our insurance has decided that having a diagnosis for CP makes it so Tyler has a chronic condition that can't be "fixed" so they will no longer pay for therapy. He gets 2 more visits and then we have none.

They (insurance) have denied Tyler AFO's for his feet saying they were cosmetic. They are not needed. I found a way to get them. I found a way.....

When we ordered a walker I thought for sure they would cover it. After all they will buy a wheelchair. But nope. Not covered. Why? It is considered a "gait trainer" meaning it is to help him learn to walk. And yep, our insurance denied it. Saying they don't pay for things like that but we can have a wheelchair it is covered. So, I found a way.

Now comes this. The therapy is working. He has done some major changing on how is feet are positioning. He is more stable. He takes more steps. And now they are telling me that because of a ugly ugly word he has no chance. He is a Little boy. Why deny him the world.

So I guess I do what I have done all along. Find a way. Work more hours, spend less money, something to pay for hope. I found hope in this new therapy. Not frustration but a glimpse of what he can do. I saw progress that we hadn't seen in a year.


But ... they will buy him a wheelchair!


Can't a mom dream... I just want my son to walk!

Why would universal health care really not work?

A debate in a mom's group I am in has sparked some MEAN thoughts in my head. I guess becasue I am in a more "medically needy" portion than all of them combined. It also comes at a BAD time when I am fighting with an insurance company to pay for a 200 dollar item that I have allready volunteered cash for.

So... let me back up....

The insurance/walker problem:

Before Christmas our doctor had written a letter of necessity for Tyler walker. It was faxed into the home health company that they used called Preferred home health. I let it go for a 3 weeks then I started calling.

I started by calling my ped's office and asking for an update. She would call the home health company and they said they were waiting on insurance. So I would make a call to the insurance and they have not "gotten anything yet." So here we waited. I really figured it would come through with no fight. Boy... I was way wrong.

So one month into above waiting I call home health myself. Come to find out they lost it. They have three Tyler Browns in their system and no one cared enough to go through HIPPA and get his birthdate. So after one month of waiting and getting no where we were not even ON square one. So we were starting OVER!! AGAIN!!

I called the peds office got another paper faxed and it got "rushed" through the process that should take "three weeks." Not sure why it should take three weeks but whatever. That was the end of January.

Here we are. The first of March. NO WALKER. I am livid at this point. Ty has allready crawled a hole in a pair of shorts and he is outside all day "crawling" He is 2 years old and doesn't need to crawl but can't get the medical things he needs to "help" him.

This is where mean mom comes in. I yell at the home health company. I volunteer to give them a check. I tell them that I will pay cash. I just want the walker. The Lady at the office proceeds to tell me that because they know that Tyler is on ACCESS ( a state run program like medicaid.) that they can't take money from me. "Most people" are poor and they can't afford anything like that. Most people are poor that are on it. I was LIVID. We make good money. We can pay cash for it. It just so happens that Tyler is considered disabled right now. We have private insurance for him.

Preferred sure got a ear full. So much that she called the warehouse and tried to find a walker but was not successfull so she decided that she would just order his and we would work out the payments or whatever later with the insurance.

Then the insurance got a ear full. They told me they had 14 days to approve it. Then another 14 days to order the equipment. I said no. You can go and approve it and in a few days we could order the walker. I can order the same walker on freaking ebay and it would get here in 24 hours. I told them I was angry and felt that they were denying him what he needed to have in order to live a respectable life. I was one angry mom. At one point I started bawling and Ty got upset.

Anyway... to make a long story short.... The insurance hurried throug his papers and they are officially back to the home health company. The home health company had allready ordered his walker and it should be here by Tuesday.

Is it a good idea to have universal health care? I have NO IDEA. but what we have now is NOT working. I am sorry that those who are in the medical field think it would be bad to have the governement have a say in what you do but what is happeneing right now is awful. It is NOT working. No 2 year old should be told that we woudl rather you be in a wheelchair because we are to cheap to give you a piece of equipment that give him independence.

I dont' have the answers. BUT by Tuesday we should have a little more freedom.