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Sunday, September 1, 2013

Hydrocephalus and Chiari Malfromation Awareness Month

Hydrocephalus Awareness Month

Chiari Malformation Awareness Month

These are two conditions that my son my live with every day. He has had surgery for both. I wanted to repeat His story on my blog. Many people come here looking for answers to questions, or to read on our story, but not many have been reading since the beginning. 6 years ago I started this blog. 6 years ago I sought out information on a condition I never heard of, 6 years ago start our Hydrocephalus Journey. It's only been 1 year since our Chiari Journey started. Or at least that is when we found out. Let's recap 6 years of our life for this Awareness Month. 

(Ignore the dates on the photos below, I did not have my camera set right lol)

Harvey and I have been together for 5 years when we found out we were expecting our first child. We were young, I was only 19, scared, still living with my parents and still at that stage where I would be afraid to tell them. Around 22 weeks pregnant I went in for my formal ultra sound. Who knew that day would change our lives forever!!! It was so silent as they were looking at our baby, which we found out would be a BOY! That was the most exciting part of the ultra sound. After the scan, the tech could not give us any answers, instead she rushed us off into a cold room where we waited for the doctor. I could just feel my heart ripping from my chest at this point. The doctor came in, and said "We found something wrong with your child's brain. I'm sorry but he has Hydrocephalus. The outcome looks grim because we could hardly see any brain tissue. It looks to be all fluid. His chances of survival are slim to none, most likely won't live to take his first breaths and if he does, he will need extra care his whole life. Severe cases like this usually end up in the child being mentally retarded or death. With you being 22 weeks along, it's only legal to terminate the pregnancy until 24 weeks. I ask that you think long and hard and consider all the possibilities. Think about how young you are, and about your unborn child also. I ask that you make this decision sooner than later please."
That was it. our whole lives at that point were turned upside down. The only thing we could do is hold each other and cry. Harvey called my mom to tell her because I was a mess. I couldn't talk, walk, or think. We decided though at that moment, we would fight for our child. We would put it in God's hands and just wait and see. My philosophy was I'd rather give my child chance, and meet him one way or another instead of terminating and spending my whole life wondering what would of happened.

So my pregnancy went on and on July 2nd 2007 I gave birth via Csection to a 7lb 11oz handsome baby boy who we named Kadyn David. I got to hold him for maybe 15 minutes before he was whisked away on to his first of many surgeries.

Kadyn went to Children's Hospital of Michigan in Detroit. His daddy rode in the ambulance with him as I had to stay back in another hospital to heal from my csection. At 10 hours old Kadyn has his first shunt placed. In the Nicu he would stay for a few weeks. I knew my little guy was a fighter when Harvey called me and told me he was doing great, he was fighting the doctors and nurses every time something had to be done and after his surgery Kadyn pulled his breathing tube out and was breathing on his own. 3 weeks he stayed until we were able to finally come home. This was the calm before the storm though. 
Holding Kadyn for the first time

Kadyn in NICU

When he was allowed to come home!

Lil man loved his swing

He was tube fed through an NG tube for 3 weeks

I taught him to drink from a bottle though. No more NG Tube!

Mama cuddles!!

After being home for a week, Kadyn had a seizure. This seizure was his first. His temp was 105, so I had to take him back to the hospital. There he was diagnosed with gram negative bacterial meningitis. He was rushed into surgery to take his shunt  out and an EVD placed. This Nicu stay would last 3 months and involved 15 surgeries before replacing his shunt and allowing him to return home. We also learned that he would  need 2 shunts. Kadyns seizures became uncontrollable, We found ourselves in and out of the ER 3-5 times a week. No amount of medication helped. 

Kadyn ended up having 3 more revisions and shunt infections before he was a year old. We celebrated that birthday like it was his last.

Kadyn's second Christmas was probably one of the most scariest of all. 

Kadyn had a bad seizure. He ended up needing to be intubated for 3 days. Kadyn had a shunt malfunction, influenza A and B and Rotavirus. It was touch and go for him once again, but he pulled through. My little fighter.

Kadyn is 6 years old today. He can say some words, self feeds himself his formula, he can roll around, smile, laugh and loves life. He goes to school and can eat soft foods. He breaths. He sees. He hears. He is alive.

Just this past year Kadyn was diagnosed with Chiari Malformation. When they first discovered it, the condition was not that bad and just something his Neurosurgeon wanted to watch. He had a follow up MRI 6 months later and we received devastating news. Kadyn would need surgery. The fluid flow from brain to spine was blocked, his cerebellum was into his spine even more, and a piece of his spine was up into his brain. He also had two pockets of fluid on his spine. Kadyn had surgery to repair his Chiari in June of this year. It was successful and he has been doing great since.

Kadyn became a big brother August 16th 2013.


Shanna Arndt said...

Love reading Kadyn's journey...and scary as it all has are a great mom...Kadyn is really lucky to have you!!

sara said...

I just love Kaydn more every time I learn another piece of his story! I'm so thrilled your happy family is growing. The four of you are blessed to have each other.