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  #1  
Old 12-04-2006, 05:35 AM
hcs_mom hcs_mom is offline
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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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Old 12-04-2006, 07:04 AM
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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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Old 12-04-2006, 07:44 AM
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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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Old 12-04-2006, 08:19 AM
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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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Old 12-04-2006, 08:44 AM
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Jennie- I will be thinking of you and Hannah today. !!
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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 12-04-2006, 09:36 AM
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Hoping for good news. I hope all is well today!
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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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Old 12-04-2006, 09:39 AM
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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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  #8  
Old 12-04-2006, 11:00 AM
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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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Old 12-04-2006, 11:19 AM
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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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Old 12-04-2006, 11:29 AM
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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!
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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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