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Old 03-05-2006, 01:55 PM
Jen3 Jen3 is offline
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Ok. We are off to Cincinnati bright and early monday morning for a dilitation and cystocopy of the uretha and vagina. Then we are staying and on thursday they are closing the vestocostomy!!!!!! This will hopefully be the end to all of the "pee-pee" issues that started this whole thing.

Then we are back in there on March 21st for our single stage LTR and DECAN!!!!!!!!!!!!!!!!!!!!!!! Holy crap that seems crazy.

I do have some questions about the trach surgery for those of you who have been thru it. They told me that after the 7 days of sedation, when they bring her out of it and pull the ET tube that she may freak out and it could be very upsetting to her and me. Did this happen to any of you? I am sure that going to sleep with a trach and then 7 days later waking without one is weird as well as breathing different but is it really that frighntening for the parent?

Anyone up there this next week tuesday thru friday stop in. We will probably be up on A6 central. Just ask for Raegan Walker. I would love to meet some of this family I feel I am a part of!!

Thanks and please keep Raegan in your thought and prayers for good news and easy recovery!!
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Mom to Raegan age 4..former 26 weeker. 1lb 10 oz. Trach, Mickey Button, Vestocostomy..26 surgeries to date. Single stage LTP done April 24,2006. And Thanks to Dr. Cotton we are TRACH FREE!!!!!!!!

Also mom to Alexis, age 10 and Corbin, age 6
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Old 03-05-2006, 03:07 PM
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sandra sandra is offline
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Praying that the surgery is easy and successful. Look forward to good news.
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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 03-05-2006, 03:09 PM
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Good luck and please keep us updated as much as you can.
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Ann-mom to Jack- 14 yrs old;vent dependent;dystroglycanopathy congenital muscular dystrophy; also mom to Hilary (22), Mary (19) and Eric (10)
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Old 03-05-2006, 03:25 PM
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T-bone T-bone is offline
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I wish you all the best. Good luck.



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Old 03-05-2006, 05:59 PM
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RobiL RobiL is offline
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hey


Good luck

I might try and come by. I can't promise anything but I"ll try.

Robin L
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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 03-05-2006, 06:07 PM
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Sounds like you have a lot on your plate-boy, March will be a month you won't soon forget. Good luck and let us know how things go.
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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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Old 03-05-2006, 06:48 PM
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I hope all goes well. I look forward to hearing good news soon!
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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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Old 03-05-2006, 08:39 PM
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alissafaith's mom alissafaith's mom is offline
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Hope all goes well in cinci! When Alissa was first taken off vent trach free hse was scared had to be bagged. But after a few mins seemed like hours she was fine. You will get to watch them take out vent. What is differace between LTP and LTR?
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
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Old 03-05-2006, 09:43 PM
Jen3 Jen3 is offline
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No idea what the difference is between LTR and LTP. That is what Dr. Cotton told me it was called. He said they will take cartlidge from the rib and place it at the front of the trachea and she will have a drain in her neck and her chest for a couple days. They will be out before she wakes. So for those of you who have had Cotton and his team do this surgery, what will the allow before they consider it a failure. I mean will they let her freak and her stats drop and all that and try to pull her out of it. I am so nervous. I am so hoping that they pull it and she is ok with it! I know, I am so wishful thinking here!!

Thanks for all of the well wishes and responses!!

Jen
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Mom to Raegan age 4..former 26 weeker. 1lb 10 oz. Trach, Mickey Button, Vestocostomy..26 surgeries to date. Single stage LTP done April 24,2006. And Thanks to Dr. Cotton we are TRACH FREE!!!!!!!!

Also mom to Alexis, age 10 and Corbin, age 6
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Old 03-05-2006, 09:58 PM
Zoe's Mom Zoe's Mom is offline
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Sending good vibes your way
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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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