Miller Time: Why I Hate Health Insurance!

Monday, May 12, 2008

Why I Hate Health Insurance!

S now that I am done with the last post I will go on to bigger and better things! Here is a warning I am going to rant like hell in this so beware! As you all are aware I work part time nights and I am tried most days! (I don't function well without sleep!) So Friday was no exception. I got home late Thursday night got a few hours of sleep and woke up to start my day! Cache does not have school on Fridays, yes I still need to blog about that, but Mason does. So I take Mason to school and of course I am ornery my kids are ornery and it is just one of those days. After Cache's teacher visits, we get in the car to go get Mason. By this time we are all tired! Diva came out of the house with us so I decided to let her go for a ride too! So off we went and much to my surprise the kids are screaming and upset for one reason or another! My precious little princess, I am being sarcastic as I say this, decides she is going to rip out Cache's hearing aid. So I grab from her. I was on the free way driving at the time so I just set it on the passenger seat so I can drive. Knowing that was a bad idea. In the mean while Cache is now pist off and takes off his seat belt, yes right on the free way! You see where this is going? So I am almost to the exit and I am yelling at him to get it back on! We stop I put it back on and we get Mason. Stop for gas, get home, make lunch, think to myself I should go get Cache's hearing aid but don't. Put babies to sleep. Then I decide to go get the hearing aid and what do I find..... an empty seat! I tear apart my car and no sign of it! By then I am thinking the dog ate it! Could that little tiny puppy swallow that big thing? Well I make the dog puke! How do I do this you ask? Well pour about a tablespoon of salt down your dogs throat and see what happens. Don't ask how I a know this! Even though I know it will be ruined when it comes out at least I know where it went. No signs of a puked up hearing aid. I call the school to see if it dropped out, no luck. I go to the gas station, no luck. It is now Monday and no luck! So why did I tell you this story? Here goes the ranting! Prepare!

The hearing aid that is now gone into the black hole of missing hearing aids was not ours! Yes there is a BIG black hole of hearing aids just ask any parent who has a child with hearing aids! See you can not buy your own aids till you see how well your child does on them so they loan you some. This is all done from Utah Schools for the Deaf, USD. As you have seen in previous posts they cost about 2K a piece. Well I will be buying that hearing aid now. Then I will be buying my own set! Drum roll please... yes that is now 6K in hearing aids. This my friend is why insurance sucks! They won't pay for my sons hearing aids! They will pay for him to have surgery and get a cochlear implant. So they want my son to have a needless surgery that cost approximately 116K and not pay for hearing aids. Why I have no clue, but this is why people are forced to get a cochlear implant. The alternative sucks! I am not a fan of the cochlear implant and I have my reasons and it is just not for us right now. Here is why... When a cochlear implant is placed it ruins the whole cochlear. This will never be able to be fixed and they will have to wear and have this the rest of there life. It is a very new technology and has only been around about 10 years but has recently been push for in the last 5. So can you imagine what will come next? They have already improved them greatly and you can't get an upgrade all to easy! It means another surgery that's if you can. It can cause vertigo and Cache already suffers from this tremendously! There is about a 3% increase of bacterial meningitis with a cochlear. Which doesn't seem too significant but with Cache he has an increase risk for infection due to his pace maker? They also push these on kids who have had meningitis because it causes profound deafness. Which then increases the risks even more! This really infuriates me! Also last but not least my son doesn't need to be fixed! He is fine the way he is. He is just as normal as you and I! He will do just fine in life! I am so sick of telling people my son is deaf and hearing "I am sorry!" Don't be cause I am not! I have learned so much from this little guy! I am so thankful to have him! When he was born I made a deal with God and I asked him to just let me keep him and I will take anything else you throw at me! He did and we are taking this as a blessing! I remember holding him at the hospital and telling him you are going to be something great when you get older, you are going to achieve great things! He already has in his short 3 years and he is truly my hero!

Don't get me wrong I am grateful to have health insurance! Without it I would be screwed! But I feel very strongly that if they paid for hearing aids it would benefit both the patient and them!

Our Long QT Syndrome Story

My teenage years were full of sports and exercise. There was not a day that went by I didn’t have some sort of game or practice. My days consisted school, track, soccer, a jog, and finished up with some strength training. Never would you have guessed my heart was broken. I was older, married and about to have my second child, Cache. I was off to my usual 32 week check-up at my obstetrician office. That was the day our lives changed forever. It was that exciting moment when you get to hear that slushing heart beat and know that the big bump in your belly is this living being in your body. That slushing sound turned out to be my nightmare. My doctor explained to me that the baby’s heart rate was far too low and that my son had something wrong with him. This is something you never expect to hear when you are having a baby. Babies don’t come out sick? At least that was my naive way of thinking. My doctor told me to walk over to labor and delivery and he would meet me there as soon as he was finished with patients he had in his office. When I got to Labor and Delivery, they strapped me up to all these machines, and I had instant panic around me. Nurses were rushing around and almost screaming. All I could do was sit there and wonder what was going on. Next thing you know I was being prepped for an emergency C-section. That was until my doctor walked in the door and told them all to calm down. It was a sigh of relief. My doctor performed an ultra sound along with what felt like another 30 doctors. They all agreed with one thing, my baby was fine for now and needed to stay right where he was. He stated that there was something defiantly wrong with his heart, but until he was born they would not know what. After 36 weeks and lots of daily monitoring and doctor visits, I was induced and my beautiful little boy Cache came into the world fighting like a champ. The next few hours were about to change our lives forever. Cache was diagnosed with Long QT syndrome a few hours after birth and was immediately transferred to Sunrise Children’s Hospital. I was discharged and headed there to figure out just exactly what was to happen next. There we were greeted by the pediatric cardiologist who had done an ultrasound on Cache’s heart in utero. He began to explain the details of Long QT syndrome and how they treat it. He then told us they could not treat Cache because his heart rate was already dangerously low. To fix this, our son was to have open heart surgery and have a pacemaker placed. A pacemaker, isn’t that for old people? We were numb and just in a really bad dream. Three days after our perfect son’s birth he was placed with a pacemaker in his little tiny tummy. I remember that day clearly and as I held him waiting for the surgeons, Landslide by Fleetwood Mac was playing on the radio. It was a Saturday morning and we meet the surgical team. They answered all are questions and we walked my infant son down a long hall. We gave him a kiss and we said good-by. The hospital waiting room was a ghost town. We waited, and waited, and waited, and then did a little more waiting. I clearly remember seeing the whole surgical team walk into the deserted waiting room. My heart sank and I think my knees nearly hit the floor. Why were all of them coming in? Why did they all need to talk to us? As we approached them the head surgeon said “Everything went great.” The best words we had heard our whole lives. I am not the “reach out and give a hug to a stranger” kind of girl but I did just that. The next few weeks, after Cache’s pacemaker placement, had its up and downs. His heart rejected the pacemaker and fluid began to build around his heart. They eventually had to go in and put a drain in to his heart to relieve the fluid. We had trouble with feeding and jaundice. It was three weeks to the day that my son was able to come home and have his two older brothers hold him for the first time. Life with Cache has proven to be a challenging one. Cache never passed a newborn hearing screen and while most parents would be freaking out about this, we had much bigger fish to fry. We were told at the time of his birth that Cache could have a very rare form of Lonq QT Syndrome called Jervell and Lange-Nielsen syndrome. This rare form of Long QT Syndrome causes sever to profound hearing loss. At about the age of three, this was confirmed through genetic testing but Cache also carries another genetic strain as well, Long QT Syndrome type 1. No one, as of then, had ever carried these two genes on the national registry. He had a double dose. It was also confirmed that I too had Long QT Syndrome type 1 and so did my other two biological children. Through the years Cache has had many obstacles he overcame. At the age of 2 ½ he had a deadly arrhythmia and was lucky to be alive. After that arrhythmia, it was then decided Cache needed his pacemaker replaced with an Implantable Cardiac Defibrillator (ICD) and have a left cardiac sympathetic denervation. It was a little over a year after the ICD placement in his stomach that it became infected. The ICD was removed and he was placed in the Pediatric Intensive Care Unit for a week until it was decided that he was big enough to have an ICD implanted in his chest. A few weeks later he had to go back in and have pieces removed that had been left in him on accident. Cache is a thriving child and plays like any other child. We have been very blessed and we all consider him our life saver. He not only saved his Mom, brother, and sister, but his Uncle and three cousins. I am the luckiest Mom in the world to be Cache’s Mom. He has given me far more then I could ever give him. Cache inspires people with his amazing smile, big blue eyes, and love of life. Cache has taught us and everyone surrounded by him that life is far too short and life is more than just the daily grind. It is about living life to the fullest and making sure those who you love, know you love them. It is about today, and living in today, not about what can happen in the future. We have today and that is all we need to get to tomorrow.

Miller Time

ERIC-MELISSA-YORK-MASON-CACHE-DYLANN

Monday, May 12, 2008

Why I Hate Health Insurance!

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