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Ask me anything - I am raising a medically fragile son

Posted by on Sep. 5, 2013 at 7:52 PM
  • 3 Replies

This is my son before his tracheostomy

This is Austin Carl (or Austin's Odyssey) and he is 2.5 years old. He was born on Halloween of 2010 6 days late. I had wanted a regular birth and my placenta stopped working properly a few days before he was born, detached, and the umbilical cord was wrapped around his neck. When he was born he was born blue. He was transferred out of my hospital St. Annes' and transferred to Nationwide Children's after a day and a half because he had his first seizures. He was diagnoised with Hypoxic Ischemic Encephalopthy (brain damage) and was one of the worse cases of brain damage they have seen.

In the years to come we were diagnosed with Spastic Quadriplegic Cerebral Palsy, Epilepsy including rate seizures that constantly plague our lives Infantile Spasms that make him regress. CVI (cortical visual impairment), Laryngomalacia, tracheamalacia, failure to thrive, g/j tube, GERD, Torticollis, vision abnormalities, dysphagia, deformation plagiocephaly, sialorrhea, developmental delay, elevated blood pressure, had 2 bowel obstructions (this year), aspiration pneumonia, small air way disease, hypertonia, stridor. He has had 5 surgeries this year including his tracheostomy which allows him to breath better by himself.

He has to be on a pulse ox 24/7 to keep his stats, has a suction machine that we have to do every half an hour at the very least, a vest machine that helps break his secretions up, a feeding pump to feed him, oxygen in the home, bipap machine, a wheel chair (as of Sept 16th when he gets it), and a cool mist machine


by on Sep. 5, 2013 at 7:52 PM
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by Gold Member on Sep. 5, 2013 at 8:04 PM

I actually recognized most of those and the ones I didn't I can figure out... So no questions but here's a hug and positive thoughts bump!

by on Sep. 5, 2013 at 8:18 PM

 Hey hugs and love to you and your beautiful boy!! Just curious that you mentioned about his being late and your placenta detaching, did that cause any of this? And if yes did they not know before hand? And will he outgrow any or all of his problems? Judging by the smile on his face I bet that makes a lot of the days easier to get through. Good Luck and Strength sent to you and your family.

Bonez 8-3-91 Bear 4-13-94 Stinky 9-26-97
kissing dad       bear with heart      ninja

by on Sep. 5, 2013 at 8:29 PM

Nothing caused it. Or the doctors didn't say something but my placenta didn't work properly with my first son. Not really about out growing his issues. Since he has severe brain damage in most part of his brain it's something that he lives with.

Even when he's not feeling good when he knows he's in the hospital (which we've spent 120 dyas in this year alone) he is smiling. He loves coming here because he knows he will feel better. He normally is in a good mood and when he's not it means something is wrong.

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