A broken heart..... that can be fixed!

We had mentioned in a previous post that we needed to take Grayson to see a cardiologist. His pediatrician heard a murmur and couldn't tell what it was. It was not a PDA or a PFO which are all somewhat "normal" in babies. It didn't have us to worried. However, the family history did make it a little more concerning.

We were able to get into the cardiologist very quickly. ( 2 days!!) And we were able to get some really good information and figure out what exactly was there.

The Doctor was really nice and I felt he was really thorough. Ty doesn't see a cardiologist so I have no idea what is normal but I felt really comfortable what he was doing and what time he took to explain everything.

After listening to his heart he explained that Grayson has Peripheal Pulmonary stenosis. It isn't anything that will cause him major or long term issues. It is generally heard in babies that are smaller than seven pounds and after a few months the pulmonary vessel grows and gets larger and the murmur goes away! Unless there is a different genetic condition there isn't any long term issues. He doesn't have those genetic conditions.

While he was listening to his heart he heard a strange clicking noise and decided, given family history, he would like a ECHO done and we went in to do it. I think ECHO's are cool to watch and I have NO idea what I am looking at. I hate that the tech's can't say anything so I just sat there watching. Give me a brain to look at any day and I can tell you a little about what I see but not a heart.

(I sat waiting forever for the doc to come back in. Dallas was getting ready to fly to New York and we were cutting it close. Our appointment started at 8 and I wanted to be home to get him at 11. I didn't get home till 11:30)

When the doctor came in he said that Grayson looked fine. We need to go back in six months. The ECHO showed the stenosis and it showed a PFO but he couldn't hear the PFO so he is assuming that the click is just how Grayson is. The heart is doing great. He doesn't love the fact that he has a few other "symptoms" that indicate an issue but he can't see anything wrong.

I left feeling so thankful. Many prayers have been answered.

Next up... Vomit Volcano, New York and Tyler goes to school. ( In no particular order!)

A tale of FREE health care

At the ripe old age of 1, Tyler was admitted to a national Cerebral Palsy clinic where we were able to get physical therapy, Occupational therapy and speech all to work with him above and beyond what he received with Early Intervention. We saw the CP docs, orthopedics, developmental pediatrician and lots of interns and we were put on a very low key treatment plan. ( which at the time was all we needed). But a good one none the less. At a VERY affordable price.... FREE!

We moved to Arizona. Low and behold this program had an outreach clinic and we were set up with some amazing Dr's and nurses that would travel down and see HUNDREDS of patients in a short amount of time. ( I will have to explain Arizona's way of insurance/CRS and other "forms" of therapy on another post. YES, we did get long term care, YES we did walk away from it to move to Utah because we felt that is where we were suppose to be and yes... We miss it horribly.. ARIZONA, not just the insurance!)

When it came to time to get a little more aggressive we needed to come back to Utah for the surgeons and rehab docs. This trip was planned well and amazingly PAID in FULL and we were able to fly to Utah and spend some time with our family before the trip ended. We also got so MUCH information to chew on. At the time we opted to go with the less aggressive form and try botox. It didn't work and the more aggressive form was the way to go.

Moving back to Utah we get in much more regularly. We see a PT, OT, Speech, orthopedic doc, orthotitcs, developmental ped ( which I am not sure I like a lot) and of course Dr. Gooch. We have a whole team that met us every three to six months depending where we are in our treatment. We see our therapists sometimes several times a week.

How much does this cost us? How much do our co pays come to and the 80/20 portion? What about when we reach our max 12 a year? ( yes insurance only gives you 12 appointments a year!)Do we get limited speech appointments?

The big answer is NO we don't. It is FREE!!!!!!

We get what is best for the child. What is best for Tyler is to keep going. To keep being rehabilitated. To keep pushing for what is BEST for him, regardless of the cost!

So how does this Marvelous plan work?

Perfectly~

It works perfectly because Tyler is a Shriner's Kid.

Shriner's hospital is a non profit organization that is run by donations and by the Shriner's religious organization. You must have a qualifying condition in order to be accepted as a Shriner's kid. You can easily fill out an application and see if you qualify. Any orthopedic or neurological conditions that affect movement and some have burn centers qualify you for this care. They also do research in several of the hospitals.

There are 22 hospitals across the Country. Children from other countries are also given chances to come to Shriner's FOR FREE to get the care they need as long as the condition is treatable.

The care that we get at Shriner's is UNBELIEVABLE. Any time you are there for a procedure there is a care kit on your bed. It includes a stuffed animal ( generally from build a bear or Kohls kids care) a blanket and the toiletries you will need for your stay. There are less patients per nurse so the care is amazing!

Sadly, in 2009 when the economy went down the tubes, so did the endowment for the Shriner's hospital. In order to keep ALL the hospitals running they did something they never thought they would have to do. They had to start charging. However, they aren't charging the patients but charging the insurance companies while waiving the co pays and any remaining balance to the children and their family. Any service that the insurance company would or could deny coverage the hospital will still do The head of Shriners said," We will always take care of children the best we can."

Recently, Utah's Shriner's hospital had to start taking the insurance from the patients. They are working to become preferred providers since the only other "competition" is PCMC and to get contracts with those they need to work with. ( which is funny because EVERY doctor that works at the Shriner's works at PCMC and we have seen them in their individual office at PCMC for full price) They are working to get the portion that the insurance would pay in order to help offset the costs of care.

I am writing this for informational purposes and also to see if there is anyone out there that would like to experience the Shriner's for yourself and would like to attend a therapy session there. We would LOVE to be able to do a service project to provide something to the wonderful people who work there that provide this care for free. Or, if you feel the need to want to donate to them please do so in Tyler's name. He would MUCH appreciate it. Because of their hard work he might even get a big boy bike next summer!

If you are interested in a tour, a time to see them in action or just to feel of the spirit of compassion in a hospital PLEASE go see the Shriner's.

As a mom of a Shriner's kid, I cannot thank them enough for the love, support and encouragement we get from them along with the support of knowing that they have everything there that will help Tyler.

Please if you can donate, even a dollar or a stuff animal or something. A little goes a LONG way!

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.

He is BACK

The ENT said that the tonsillectomy takes ten days to get better. Oh boy was he NOT kidding. Friday hit our official ten day and I was able to breathe deep. He no longer had to be in total seclusion, we didn't have to be on total house arrest and we didn't have to take a nap OR be sad all day.

Since we changed so many things at once because he was sick we aren't sure what has changed but the biggest change we have seen since having his tonsils out is that he has slept a lot better. He hasn't had his pain medicine for awhile. And now I am Jinxing myself, but he has slept in his own bed through the night for almost a week!

That would be A WEEK!! The longest he has EVER done that. 5 years. FIVE YEARS. He hasn't slept through the night. We have been vaguely impressed and we really don't want to be jinxed. So we will pretend I didn't say it out loud.

Today we got the house cleaned up and we went out to pick up all the rest of our medicine. We decided to pick up a little pool for the back yard. ( OK it is a big pool) Ty was so excited. He spent the whole time walking around the store saying " wow, Neat!" And then saying pool and swimming and open.

We blew it up and we started to fill it up. The water in Utah is COLD. Arizona it comes out warm. Ty played for a bit then decided he was done.
'

We have a few crafts that we are going to do this week and we need to take a trip to the library.

We hope to be able to find a few activities this month. The Labrum's are around so hopefully they will come and play!

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!