Thursday, December 17, 2009

That stuff costs how much?!?!?!????

We made it home tonight from the PICU. Everything went as planned and there were no surprises. The lab work all came back good. The echo of his heart was good and they managed to get an IV on him the first try! That was a miracle! He is a super hard IV start. At Childrens Hospital he was on a no poke list after 12 failed attempts to get an IV over 2 days. He had to go to the O.R. and be put under just for a stinkin IV! Three times too!! Anyways, the ACTH was overnighted from California and my Dad stayed at the house to sign for it. We were not able to leave the hospital till it was at home safely in the fridge. Now get this....... you may think this is a typo but its not. One vile of the ACTH costs 24,000$! I swear! And three viles were shipped to my house. Do the math.......CRAZY! Apparently this is liquid gold! This is only one months worth too! Here is the next thing I bet you are all thinking.... Did the insurance pay for it??? Yep they did. They were not to happy about it though. The nurse from the neurologists office spent hours on the phone with them yesterday. But they agreed it was necessary. Thank goodness for good insurance! This is why I grudgingly drag my self into work many nights not so much for the paycheck but for my insurance!! Super blessed for that!! Anyways, my kitchen cupboard looks like a pharmacy at this point. Who new a red sharps container went with my kitchen decor??? Its no Pottery Barn but its what I got in life right now!! So I gave the shot this morning at the hospital with the nurse holding Kaden down. In the morning its Brandons turn to wrestle him. Not looking forward to this......... but its what has to be done. We should know in a week if this is going to work or not. I pray it does. There is only one last option for us to stop these seizures if this doesn't work. I am putting a poem on here I found please read it if you have time. I love it!!

WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland

Sunday, December 6, 2009

From The Beginning...............

Kaden was born March 16,2009 weighing 5 lbs 15 ounces. He was born emergently 3 weeks early by emergent C-section. Kaden's complicated birth and breathing issues left him on a ventilator and in the NICU for 12 days. Even though he was only on the ventilator 1 day many more obstacles lay ahead for our tiny miracle.
After 12 days in the NICU we took our beautiful baby home and lived happi;y ever after right?..........we tried. I knew something wasn't right from the beginning. From the first few days home for four and a half months Kaden cried and cried. It broke my heart not knowing what to do and that something was wrong and I couldn't fix it. We took him to the pediatrician many times even to the ER a few times. We were always told it was colic and it would go away soon. The stress was high in our home. Our older kids also struggled with Kadens constant crying.
Around four months we started noticing every once in while he would look to the right and his eyes would kind of go back and forth for just a second or two. I really just thought it was a case of newborn eyes that were still a little uncoordinated. I did mention it to the doctor who suggested we see a neurologist. So we made an appointment. But before we even made it to the appointment I took Kaden to the ER after along day of crying. I was adamant they do something. Run some tests do something! I knew it was not colic. After I told them about the eye movements he had been doing several times a day they decided to do a CT scan of his brain.......................................Here is where my world crumbled,spun, and crashing to the ground. My life forever changed with that one picture of my sons brain.
We were told Hurley could do nothing for my son. I held my baby in my arms on the stretcher as a ambulance took us to Detroit Children's Hospital.
We spent 11 days at Children's Hospital. Kaden had to undergo a battery of tests. From EEGs, EVPs, Echos and MRIs. So many tests and specialists it wasn't even funny. Our days were emotionally exhausting and our hearts were heavy. Actually, heavy doesn't describe it! I felt like someone ripped my heart out of me. I was devastated. I sobbed constantly. If I wasn't listening to a doctor talk to me I was silently praying up a storm in my head.
When all the tests were in we were told Kaden had severe brain damage. The eye movements we had been seeing were actually seizures. He was diagnosed with a rare type of epilepsy called infantile spasms. Kaden was also diagnosed with severe spastic quadriplegia cerebral palsy, heart arrhythmia's(SVT), GERD, anemia, hearing and vision impairment.............................This is where I don't know what to say.............this is where my friends and family don't know what to say to us...........this is where we crashed and burned for a little while.
The first few weeks after learning all of the above is a bit of a blur. Like a bad dream. I cried every single day for a month and a half. I specifically remember the first day I did not shed a tear. I was happy that day. Unfortunately there have been many more tears since then and I know many more lie ahead of me. I'm still not completely out of this dark place yet, but things do seem to be getting better for Brandon and I. Kaden is teaching us things everyday. Our way of thinking has changed as have our priorities.
I know God is in control and that Kaden is here for a purpose. I am so very blessed to be his Mommy and we are so blessed to have him here with us.

I created this site to keep so many friends and family updated on our ever changing life with Kaden. The outpouring of love and support from our family, friends and coworkers had been overwhelming and amazing. Please know that from the bottom of our hearts we are forever thankful.