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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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#1
09-16-2008, 07:16 PM
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Distraction -- Day 1. Alex does fine.
We turned the screws today for the first time at 4 PM and then again at 8:15 PM. Alex only objects to the last quarter turn on the left side. The doctor did the first set, and DH did the second, so I haven't done it yet, but DH said the left side has more resistance than the right side does.
Hugs to all of you, and thanks for all the hugs and support. It is not a fun road, but it is easier knowing all of you. Truly. I'll start another montage of pictures, and when it makes sense, I'll post another remix showing how his face changes.
__________________
Karin Alex's Mom Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/ 
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#2
09-16-2008, 08:10 PM
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I logged on earlier looing specifically for this update. I'm glad it went well. I imagine it will only get easier.
__________________
Angela - mom to Zach 14, Jake 12, Nick 9, & Kate 9/28/06 Pierre Robin Sequence, Stickler Syndrome, decannulated July 4, 2008 -- Kate's blog http://pieceofkateb.blogspot.com/ 
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#3
09-16-2008, 08:27 PM
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Karin,
I am so glad he does fine. I saw your montage on Carepages before I looked here - he sure was swollen but he was so brave! I could see he was attempting to smile. Take care, all of you. Special (delicate) hugs for Alex. Ola
__________________
 Mom to Michael, 08/07/07, PRS
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#4
09-16-2008, 09:32 PM
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Hugs to you all-
Hope
__________________
custodial g-ma to Shelby ~~ premie born 9/28/05 with choanal atresia, trached 12/28/05 -- sub-glottic stenosis due to repeated intubations, decanned 3/10/08  http://s307.photobucket.com/albums/n...t=4acb482c.pbw
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#6
09-17-2008, 01:47 AM
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I think I see the light at the end of your tunnel.
__________________
Ann-mom to Jack- 14 yrs old;vent dependent;dystroglycanopathy congenital muscular dystrophy; also mom to Hilary (22), Mary (19) and Eric (10) Jack's Journey and Then Some TouchStones of Compassionate Care The Willow Tree Foundation   “Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true”
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#7
09-17-2008, 06:35 AM
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Karin,
good to hear all is going well so far. I didn't get a chance to post but I watched the first movie...what a sweetie Alex is, his smile was so great to see near the end of the montage and WOW what beautiful blue eyes. Keep on truckin!
__________________
Amanda's mom, deb.
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#8
09-17-2008, 10:31 AM
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Glad Alex did fine. It sounds like your DH probably found it harder, but that's understandable. I think its worse for us as parents than for our little ones, they are so resilient. what a star Alex is!
 Julie xxx
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  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#9
09-17-2008, 12:17 PM
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I'm glad Alex is doing so well. What a tough little guy he is. Please keep us posted. Enjoy your trip to Florida.
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Claudia - Mom to Sienna (4-22-07) and Sammy (12-14-2008). Sienna was trached 9-27-07 for vocal cord paralysis. Right cord now moving. Decannulated on 7-16-2008! 
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#10
09-17-2008, 12:18 PM
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HUGS TO YOU GUYS!!!
__________________
Mom to Anthony (4 1/2) born on 7/6/05 at 29 weeks. Thought to have Jeunes Syndrome. Trach/gtube/sprints off the vent twice a day. Cadence 15 months. Jayden 7 weeks. Stepmommy to Ariana age 8 and a half Anthony's Myspace http://www.myspace.com/anthonyxavierruiz My Myspace http://www.myspace.com/babysupermansmommy
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