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| Ventilator Kids For parents and caregivers of children on ventilators. |
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#1
02-15-2009, 12:43 PM
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Off the vent while awake!
Nate's been cleared off the vent during waking hours! He had been doing great with 2 3-hour sprints a day and his vent doctor said to try all day and Nate is doing pretty well. We can tell when he gets tired and if we ask him if he needs the vent, he will actually tell us yes or no. It's cute in a weird way.
 And he's been switched to Flovent puffs from Pulmicort nebs so bedtime is much easier and faster! Life is good in our house. A friend laughed when I told her how nice it is to just lug the suction machine around. She said it's all about perspective because if we had come home with no vent, the suction machine would be the albatross and not the vent! We're just giddy around here, but we're keeping the vent close by just in case.
__________________
~Caty mom to Bo (4/05) and Nate (3/07 ~trached 2/14/08 for resp. failure secondary to congenital hypotonia~vented while asleep) 
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#2
02-15-2009, 01:16 PM
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Wow! You must be thrilled! We've been tethered to a suction machine for years....wouldn't know how to act without that.
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#3
02-15-2009, 05:38 PM
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Great news!!
__________________
Trish PROUD Mama to TWO 26 wkrs 1055 g- Olivia Forever 7, trached for 6.5 yrs, gtube, iv port, BPD, Hydro/VA Shunt, Epilepsy, CP, Fought Hepatoblastoma for 28 months 688 g- Nathaniel is my bright 10.5yo
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#4
02-16-2009, 08:30 AM
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Yeah, we just got there last week too. I'm still holding my breath.
Karen
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 [SIGPIC]Karen----Mom to Faith (6), and Natalie born 10/12/07 @ 25 weeks, 1lb 3oz. Came home 6/10/08 with a trach, vent, nissen with g-tube, and pda ligation. BPD, reflux, subglottic stenosis. Off the vent!!!! Double stage ltp 5/10. Decan 5/11/11!
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#5
02-17-2009, 02:49 PM
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Yay! Congrats!
__________________
Has a daughter who is vent dependent.
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#6
02-17-2009, 09:56 PM
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Congrats!!!
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#7
02-20-2009, 11:41 AM
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   This is great news!!! We are so excited for you!!!~Maggie
__________________
Father (and mother) to Tommy, born via an emergency EXIT to Trache 8/1/06. Diagnosed with Congenital High Airway Obstruction Syndrome (CHAOS). VACTERRS Syndrome. Vocal cords completely fused until Double Staged LTP 03-03-08, refused shortly after stent was removed. Second Double Stage LTP 1-20-09. CarePage: BabyBoyce “With man this is impossible, but with God all things are possible.”
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