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Old 08-17-2005, 06:35 PM
Triciasmom Triciasmom is offline
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We have made it through the lingual tonsils (done in July) and now we are preparing for another round of arytnoid work. Patricia will be at CHOP for this surgery next Tuesday, the 23rd. The plan is for a stent to be in place for 2 1/2 weeks until Sept 9th. We also plan on just 2 nights at the hospital before heading home.

This is our 5th summer of surgeries, and the 23rd general anesthisia proceedure for her in 4 1/2 years. PHEW! We will scope her sometime in late Sept/early Oct to decide on another capping trial. No expectations....just day by day.


Godspeed

Clare
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Mother to 3 Â*Rebekah 12. Patricia 9 and Jacob 7.Â*Patricia--diagnosed at age 4 with VCP/Subglottic Stenosis. Â*Has had T/A, LTP(8/10/01),Trach(2/25/02), 2 trach revisions arytnoid work,vocal chord lateralization(8/10/04) and countless broncs in the last 4 years. Decannulated!! 9/30/05 Â*Patient at CHOP
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Old 08-17-2005, 06:49 PM
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sandra sandra is offline
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You won't know what to do with yourself when you have a summer without any surgeries. Praying that day is coming for you guys. I hope it goes well!
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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 08-17-2005, 07:47 PM
Zoe's Mom Zoe's Mom is offline
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Clare,
I hope everything goes well for you guys! I'll be sending you good vibes!
Lora
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Lora - Mom to Zoe (12/26/04), former 27 weeker, BVCP, Subglottic Stenosis, mild reflux, g-tube
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Old 08-17-2005, 07:48 PM
hcs_mom hcs_mom is offline
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Clare,

Patricia has certainly traveled a rough road. I pray that the end is in sight. Remembering her in prayer on the 23rd...please keep us posted.

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 08-17-2005, 10:05 PM
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RobiL RobiL is offline
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Clare

I'll be praying for Patricia on Teusday. Hope things go well and she isn't in the hospital for too long.

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 08-17-2005, 10:43 PM
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Big prayers for you guys on Tues.

Blessings,

Dawna
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Dawna, Mom to Tristan 6 yrs, former 22wk preemie with trach (decanned 6/20/07!!), Josh 25, Jenna 21, Gracie 14, and Jon 11.
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Old 08-18-2005, 07:53 AM
Barb Barb is offline
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Tricia will be in my prayers Tues.
We will be at CHOP with you -- but on the gi/endocrine floor. I hope we will get the chance to meet!
-BArb
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Mom to Bobby, born 10-03, Beckwith-Weidemann Syndrome, trached December 03 due to macroglossia (enlarged tongue) causing upper airway obstruction. Also Mom to Audrey (13) Maddy (11) and Billy (9). Bobby was DECANNULATED 8-17-04 (8months and 1 day with the trach).
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Old 08-18-2005, 09:38 AM
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Melisande Melisande is offline
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Good luck to you and Patricia!
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Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad!

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Old 08-18-2005, 09:40 AM
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good luck next week...and hoping for different types of summer trips for you next year.

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 08-18-2005, 09:44 AM
Laurie Laurie is offline
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I hope everything goes splendidly!
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Laurie - Mom to Evan (the E-man), 27 week preemie, born 2-23-02, trached at 3 months for severe BPD. Vent dependent until 10 months, G-tube placed at 17 months, oxygen dependent until 2 years, 3 months, decannulated 6-27-04 at 2 years 4 months. The most enthusiastic, positive person I've met.
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