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Pediatric Tracheostomies For parents and caregivers of children with tracheostomies.  Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support.

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Old 03-03-2007, 08:14 AM
Jordansmom's Avatar
Jordansmom Jordansmom is offline
Join Date: Feb 2007
Location: illinois
Posts: 484

Mom to Justice 7/02 (he calls me mum mum) and Jordan 2/04

Jordan born emergency c-sect. due to placental abruption. g-tube at 3 weeks then released from nicu to home,(dx w/hypoxic brain injury, poor feeding, seizure activity) fundo 5 months later for severe reflux. worked great for almost 2 years then reflux again w/aspiration causing respiratory problems. g-j tube 6/06 Trached 7/06, can not repair fundo yet, doc. said it would be too tight. Jordan has been dx w/cp, seizures, I am not sure of the actual technical dx for the trach, but it was a very long summer spent in & out of many hospitals, with one issue after another. (My mind is a blur for those few months.)

Jordan is a very sociable, happy boy. Takes everything in stride & is well aware of whats going on. Loves to interact with other kids and get snuggled.

Justice is my high energy mad man. Also very sociable, loves to play with his brother and, figured out how to play with him which is awesome. Loves to HUG!, goes to preschool, & helps take care of his brother.

Me, very happy I found this place.

Mom to Justice 7/02 never stopping mad man, and Jordan 2/04,c.p. trach.
Tracheomalacia, gj-tube, reflux w/nissen, seizures, spasticity.... & it's official the epilepsy dx.
LOVES Sponge Bob, birthday party's,& misses school

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Old 03-03-2007, 08:41 AM
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twintotwin twintotwin is offline
Join Date: Jul 2004
Location: USA
Posts: 5,914
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Hi Cathy- Welcome to the board! Hope to hear more about your little guys.

Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002).
Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo!

The Birthday Boys by TwinTransfusion, on Flickr
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Old 03-03-2007, 11:00 AM
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cbissell cbissell is offline
Join Date: Feb 2002
Location: Grafton, MA
Posts: 2,063

Kerry, love the cave addition, well done
Cindy - Mom to Aaron (age 22), trached for 4 years, subglottic stenosis, ADHD, learning disability, former 26 week preemie and identical twin to Eric (age 22), spastic quad CP, moderate MR, seizure disorder; Anthony (age 22), spastic quad CP, trach, g-tube, j-tube, seizure disorder, cortical vision impairment, profound MR; and Natasha (age 8) CP, cortical blindness, seizure disorder, profound MR, shunt, g-tube.

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