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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 (31-34):
special.mama
by Member on Sep. 9, 2013 at 1:16 PM

When he first was born and we started to realize things were really bad with the amount of brain damage he had I was destroyed. I had worked with special needs children but the thing was it's different when it's your own child. I was seeing all my friends give birth to these perfectly typical children and here I was. Watching my son fighting for his life. I had PPD really bad. 

When things got a bit better and we got use to a new normal. When something was added we had a good cry and decided what to do from there. This year has been the hardest because we've spent abotu 120 days in the hospital this year alone so our family was torn apart. Austin was in first just because of failure to thrive. We couldn't get him to gain weight so we had to play with a lot of different options to gain weight. We were in for over 30 days. We had decided to get a j tube that was separate all together from his G tube which is a bit rare. When we went in another time it was because he had a bowel obstruction, again within 24 hours he had another one and was transferred to the PICU. He had to be kept open with a wound vac to keep it from healing over to early. He had blood transfusions and it was very scary. Everyone was surprised when he made it through that. And he had another surgery to close him. We thought things were fine until he started to have respitory issues.

We were put on bipap which was scary. And eventually we decided to get a trach because he was working so hard to breath. He worked so hard to breath and when he got his trach just recently he has been breathing on his own! Which is a miracle.


Quoting MamaMerkle126:

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.



special.mama
by Member on Sep. 9, 2013 at 1:17 PM

Yes I have a 4 year old as well. They are 20 months apart. Justin and Austin love each other soooo much!!


Quoting NikkiPitt0805:

 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!



MamaMerkle126
by on Sep. 9, 2013 at 1:40 PM

That's amazing! Congrats!


Quoting special.mama:

When he first was born and we started to realize things were really bad with the amount of brain damage he had I was destroyed. I had worked with special needs children but the thing was it's different when it's your own child. I was seeing all my friends give birth to these perfectly typical children and here I was. Watching my son fighting for his life. I had PPD really bad. 

When things got a bit better and we got use to a new normal. When something was added we had a good cry and decided what to do from there. This year has been the hardest because we've spent abotu 120 days in the hospital this year alone so our family was torn apart. Austin was in first just because of failure to thrive. We couldn't get him to gain weight so we had to play with a lot of different options to gain weight. We were in for over 30 days. We had decided to get a j tube that was separate all together from his G tube which is a bit rare. When we went in another time it was because he had a bowel obstruction, again within 24 hours he had another one and was transferred to the PICU. He had to be kept open with a wound vac to keep it from healing over to early. He had blood transfusions and it was very scary. Everyone was surprised when he made it through that. And he had another surgery to close him. We thought things were fine until he started to have respitory issues.

We were put on bipap which was scary. And eventually we decided to get a trach because he was working so hard to breath. He worked so hard to breath and when he got his trach just recently he has been breathing on his own! Which is a miracle.


Quoting MamaMerkle126:

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.





special.mama
by Member on Sep. 9, 2013 at 8:22 PM
thank you so much
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