Wyatt James Koger, A Fighter from Birth: CDH Awareness

Friday, April 19, 2013

CDH Awareness

Wyatt is now five years old and is doing great! He is involved in t-ball, takes violin lessons, gymnastics, and goes to preschool. Academically he is right on track! He just earned a gleaming report card and is all ready for kindergarten next year.

On the flip side, Wyatt and our family will ALWAYS live with CDH. He still is on oxygen at night, we still have nursing, and he is still has a g tube. He eats more solids, and we recently changed his formula to 1.5 cal Pedisure and altered his night time feeds.

Some new issues we are dealing with is something I am not prepared for which is Wyatt's interaction with his peers. Kids ask about his ECMO scar on his neck, they ask him why he runs differently and slowly, and he never wants to be bolus fed in public. I am telling Wyatt to be proud of his scars and that he was brave and a fighter and to use those opportunities to spread awareness. It's hard for a five year old to comprehend all of that. Peer pressure has power. I am sure Kindergarten will bring a new set of obstacles.... but if Wyatt can survive CDH and endure 8 major surgeries, five years of therapies and doctor appts; going to a big school will be no big deal:).

His personality and love of life is contagious and I hope that fire in him never burns out (even with peer pressure).

No comments:

Post a Comment

Hurdles that I faced and achieved!

After birth, I was placed on ECMO at Johns Hopkins Hospital for 13 days. On day 13, I had a surgery to repair my hernia and was removed from ECMO, but my organs would not fit in my abdomen. I had a silo for a week and then surgery to place the organs back in the abdomen. Then, part of my intestines re-herniated into my chest cavity two months later and I had another surgery to repair that. After my first surgery, I experienced an intraventricular hemorrhage in my brain and at four months old I received a VP shunt. After I was extubated, I learned that I have right vocal cord paralysis. Then I had g-tube surgery and after I finally got to go home after 5 longs months at Johns Hopkins and Mt. Washington Hospital! Only for a few weeks, though. In mid-April my intestines reherniated again and sent me into surgery. I came home, and had a long run before my THIRD reherniation in the beginning of September on Labor Day weekend in 2008. Then I was hospitalized for twice during the winter 2009 for two respiratory infections. Well, I almost lasted a year until my next surgery! Just this past June, in 2009, I had surgery to wrap my stomach around the esophagus, a nissen. This has helped with my reflux and my hiatal hernia. I will be 2 in October, I love scooting around but refuse to stand up and walk. I am a little miracle and thank God, my doctors, my nurses, family, and friends for my strength, my fight and a happy life.