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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. |

12-04-2006, 05:35 AM
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Senior Member
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Join Date: Dec 2003
Location: Ohio
Posts: 2,990
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I was afraid to post earlier, you know, always waiting for the other shoe to drop...
Anyway, we started an ATB as a precaution last week. For the first time EVER, Hannah required no oxygen when she was sick. Of course, this was not the sickest she's ever been, but I thought it was a nice way to be sick. Her sats were indeed lower, especially asleep, and still positional, but no nearly as bad as before the laser in November. So while I think the laser arytenoidectomy resolved *some* of the collapse issues, I am doubtful that it did *enough* to avoid an LTP.
I am OK with this. I feel this incredible sense of peace about the whole thing. I don't want her to have another surgery, but if her airway is still not safe, and there is a way to fix it, then fix it. Her scope is late today, oh I pray they are on time. She was allowed to eat until 6:45 this AM. So, she should be eating breakfast right now (I'm an idiot, I came into work this AM).
I will update when I can, but I honestly expect that she will be having an LTP next week. With what I saw during mild illness last week, I'm not comfortable decannulating. Unless he sees something in her airway to convince me otherwise. He may try to cap a night or so, just to be sure, but I really don't want to put her through it unless he's pretty certain that her airway is stable enough to tolerate. I don't need to wipe her out before major surgery, not to mention, being on the floor with all the respiratory junk a week before surgery. That's certain to delay things.
Jennie
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Mommy to Hannah 8/2/03: fmr 25-weeker, trached 11/03 for subglottic stenosis, LTP 4/05, CTR 4/06, LTP 1/07. Decannulated 1/19/2007!! Gearing up for reconstruction #4; Also Mom to Brianna, 2/22/98: fmr 24-weeker, a little dramaqueen. My amazing gifts.
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12-04-2006, 07:04 AM
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Mentor
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Join Date: May 2003
Location: Atlanta, GA
Posts: 4,469
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Jennie,
I pray that Hannah doesn't need an LTP.
This is it, Hannah (and you) have been through enough.
Amanda
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Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube.
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12-04-2006, 07:44 AM
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Member
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Join Date: Jun 2005
Location: Delaware
Posts: 875
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prayers for Hannah today.
sebby
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Menna born 1/19/04 former 24 weeker, trach 4/16/04 for tracheomalacia, developed subglottic stenosis. CTR 7/27/05--double stage LTP 3/13/ 2008.. Decan October '08....healthy happy crazy kid!!
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12-04-2006, 08:19 AM
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Senior Member
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Join Date: Jun 2004
Location: Bellbrook, OH
Posts: 1,009
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 That's got you Jen
I'll be praying a ton today for you guys.
If she has the LTP when is it scheduled for?
I'm in on the 15th.
Robin
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Former 24 weeker, decannulated 2 times, retrached Feb 2006. Mom to 4 crazy kids: Owen 8, Hanna, Bailey and Olivia 6 yr old triplets. Always striving for the perfect airway! [/url]
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12-04-2006, 08:44 AM
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Mentor
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Join Date: Jul 2004
Location: USA
Posts: 7,467
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Jennie- I will be thinking of you and Hannah today.  !!
__________________
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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12-04-2006, 09:36 AM
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Senior Member
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Join Date: Nov 2003
Location: Texas, US
Posts: 5,835
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Hoping for good news. I hope all is well today! 
__________________
Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.
B & C are surviving triplets. Brooke survived for 1 month.
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12-04-2006, 09:39 AM
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Mentor
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Join Date: Jun 2002
Location: Columbus OH
Posts: 1,886
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Jennie-
Many prayers coming your way. As I've said before, I HOPE that you are not at the hospital when we are next week!!
Anne
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Anne, mom to Evan, born 1/18/01, preemie, TEF/EA repaired, subglottic stenosis, laryngeal web, trach at 6 wks, LTP 8/02, decannulated 5/17/03 , Mic-Key button removed 7/2/04.
http://www.tracheostomy.com/trachkids/kids11/evan
http://anne-evan.blogspot.com
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12-04-2006, 11:00 AM
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Senior Member
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Join Date: Dec 2004
Location: England
Posts: 10,932
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Jennie
Hope all is well. Update when you can
Julie
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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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12-04-2006, 11:19 AM
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Senior Member
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Join Date: Oct 2005
Location: Wv
Posts: 1,277
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Praying all goes well today and next week also!
mandi 
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Mandi mom to Alissa Former 24weeker born 2-25-04 trached May 04. Had Ltp 11-28-05 Now trach free.
Also mom to Makayla age 8 and summer2
www.caringbridge.org/visit/alissa
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12-04-2006, 11:29 AM
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Senior Member
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Join Date: Oct 2005
Location: St. Louis, MO
Posts: 2,823
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I'll be checking in today looking for another update. I hope all goes well and they can proceed in the best way possible for her! 
__________________
Kristy
Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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