Korbyn Lehr Brown
TrachKid Profile
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Korbyn Lehr Brown
On February 17, 1999 Mommy's Dr. decided to take me by C-Section 2 1/2 weeks early because I wasn't getting proper blood flow anymore. I weighed 4lbs 12oz and 21 inches long. My mommy & daddy were very scared when I was born because something wasn't right the nurses were unable to clear out my airway because of an obstruction. The Teddy Bear Transport Team took me to Cook Children's Hospital of Ft. Worth to see what was wrong. It was really hard on mommy and daddy both, mommy was sad because she couldn't be with me &daddy was sad because he had to leave mommy. But she said its Ok daddy you go watch over our angel. Dr. Tim Black met us upon arrival and took me right into surgery to repair my TE Fistula. My esophagus hadn't formed all the way to my stomach; it was still connected in a mass at the top of my trachea. I was in surgery for 7 hours and then went to NICU was put on a vent. During the next 3 weeks, they tried 3 times to get me off the vent & finally I had to have a bronch done. They found I had Trachea Malacia, my windpipe was so floppy it would collapse shut and not allow any airflow through that's when I got my Trach. During that time I also had Jaundice so you know what that calls for, Yep UV Lights & Cool Sunglasses. I just had to stay another couple of weeks upstairs in the Transitional Care Unit while mommy & daddy learned how to take real good care of me. Finally the day came to go home, mommy & daddy were happy & sad, and the thought of taking me home alone without any nurses to rely on was quite frightening. I came home with what seemed to be thousands of things to take care of me with and mommy became very organized really fast.
Mommy quit work to stay home with me and I also having nursing 40 hours a week. I've had my ups & downs. The Drs have found that part of my brain didn't develop & I have Cerebral Palsy. I'm getting ST, OT, & PT weekly and of course mommy & the nurses work with me daily. As of June I am able to hold my head up by myself for about 30-45 seconds, everyone just praises me!! I can only see shadows and see best with my peripheral vision. I do have a good sense of hearing. I just got my Big Boy Trach 3.5 PED and am much happier. I sleep through the night although mommy has to get up about every 5-7 minutes to suction me between 2am - 5am, yes I sleep right through it. I guess I take after my daddy.
Ten Years Later
Korbyn started walking at the age of 2 1/2, he was decanulated at 3 years. Over the years his hospitalization have been much less, he still has lung problems and is easy to sicken. He is still 100% tube-fed, and takes nothing by mouth, he has had numerous swallow studies, he has a hyper gag reflex, a weak trachea, and a swallowing dysfunction. He has been to 3 different feeding clinics around the states and none have helped. He still gets OT and Speech along with feeding therapy. We always give him a plate of food at mealtimes and he orders his own whenever we go out to eat. In hopes that one day he will start eating, he wants to so bad, he LOVES steak and he has probably eaten 1/4 of a teaspoon in his life.
Because of the ACC (corpus Callosum is missing from the brain) he has trouble doing some things you and I wouldn't have any problems with. He does pretty well in school, although he does have his bad days where things just don’t seem to come together. He can't ride a bike, roller skate, skateboard, etc. He is afraid of escalators, load noise, textures bother him, afraid of heights and all of these are to the extreme, I mean he FREAKS out, people around are staring. He has taken Tae Kwon Do, been in the Cub Scouts, he won 3rd place in his District the Pinewood Derby of KY. We have 2 Boxers and 1 Boston Terrier that Korbyn has grown up with and that who he pretty much plays with, he is shy and most of the children around here are very sports related and he is small and scared of hard play, and the bigger boys do pick on him.
Korbyn has a 35 year old Sister and a 27 year old Brother, they visit often and talk on the phone much. His Granny came up and stayed with him for 3 days while Mom and Dad went away for our first time without him in his lifetime, they handled his feeding fine, and he didn't miss us :-(, no really it was a good thing.
Korbyn will be going into 4th grade and it is going to be a test of how he meets the goals, I don't know if he will ever be able to be self-functioning and be out on his own, only time will tell.
Mark & Doshia * Mom & Dad to Korbyn 10 years old - Blonde hair, Big blue eyes, & a Killer Smile. C - ACC, TE Fistula (repaired), Trached for 3 years -Trachea Malacia & Esophageal Atresia, Asthma, Floppy Airway, RAD, Swallowing Dysfunction, Hyper Sensitive Gag Reflex, GERD, Fundoplication, Pyloraplasty, Mic-Key Button, 100% tube fed. Catrina 35 yrs. & Stinson 26 yrs who we left in Dallas :-( when we moved from TX to KY for a Better Ozone Quality!!!
wethreebrowns@windstream.net
History
- Blog
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- Member for
- 3 years 42 weeks
Location
- Country
- United States
- State/Province
- Texas
