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I'm a mom of a medically complex kiddo ask me anything

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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


ASK ME ANYTHING!

by on Sep. 5, 2013 at 8:31 PM
Replies (21-30):
special.mama
by on Sep. 9, 2013 at 10:44 AM
we of course have our favorties. do does Austin. he had his favorite doctors too.


Quoting hunnny_bre:

Do you have a favorite nurse throughout hospital visits or Dr appointments? If so what did they do to make them your favorite?



Austin is such a handsome boy. Hats off to tou and Daddy.

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mandee1503
by on Sep. 9, 2013 at 10:44 AM
You got a new name?
special.mama
by on Sep. 9, 2013 at 10:46 AM
it takes months to get it ordered is all. he is still able to fit in a regular stroller but we want him to have more support


Quoting hunnny_bre:

What took so long (due sept 16th) to get him his wheelchair? Or is he getting a new one?

Posted on CafeMom Mobile
special.mama
by on Sep. 9, 2013 at 10:46 AM
oh yeah a long time ago. hahah


Quoting mandee1503:

You got a new name?

Posted on CafeMom Mobile
mandee1503
by on Sep. 9, 2013 at 10:50 AM
Oh lol haven't seen you around.

Quoting special.mama:

oh yeah a long time ago. hahah




Quoting mandee1503:

You got a new name?

WifeMomStudent
by on Sep. 9, 2013 at 10:55 AM
What a beautiful blessing :)

What does a "day in your life" look like?
MamaMerkle126
by on Sep. 9, 2013 at 11:03 AM

My only question... how do you keep it together? I know a mother has to be strong for her children, but I can't imagine keeping my cool watching my baby go through something so unfair.

May God bless your family and support you in all your challenges, and best of luck to you and your sweet little boy.

NikkiPitt0805
by on Sep. 9, 2013 at 11:06 AM

 Do you have any other oldren or is he your one and only?  Also thank you for sharing your story and answering questions...I don't know you, but you seem like an amazing person!

jobberwocky
by Chrissy on Sep. 9, 2013 at 12:10 PM
No questions for you. Just want to say what a handsome young man you have! Prayers are with your family to help keep you strong on the more stressful days.
special.mama
by on Sep. 9, 2013 at 1:03 PM



Quoting WifeMomStudent:

What a beautiful blessing :)

What does a "day in your life" look like?


Since we are trying to get use to our new "normal" it depends on the day. If he's having a good day sometimes he sleeps through the night. Others he does not. I know Friday going into Saturday he didn't sleep till 5 am. When last night he slept until 4 am. His nurse arrives at 9 am - 6pm so I get help there. He gets his first medication through "flushes" which means every 2 hours he get some kind of fluid. 20mLs every two hours just of some kind of water. Miralax which helps him have bowel movements is given at the beginnning of his shift. She will do is second medicine about 10 am and clamp his g tube (goes to the stomach). 10:30 he will get unclamped and teh rest of his medicines including his seizure medicines and pain medicine in his j tube. He gets about 12 medicine at this time. He gets a bed bath and gets to play with his toys. he cannot sit up on his own so everything is assisted.

We need to suction out his trach quiet often and keep him on his HME (it is on his trach to filter everything). He throws up a lot so we got to make sure that we help assist him with that as well and clear his mouth. He gets another medicine abotu 2 pm which is another seizure medicine. 3 pm he gets 4 more medicines as well. Throughout the day we got to make sure we turn him so he doesn't get pressure sores. We are getting OT/PT soon we hope! Throughout the day there is always something like vest treatment. His nurse leaves at 6 pm. Then daddy comes home. Weekends and nights we don't have anyone yet. So sometimes I'm up all night with him comfort him. He loves to be outside playing int he grass. He loves listening to football and Barry Manilow.

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