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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
07-05-2005, 12:11 PM
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alli is still struggling with extreme stridor and retractions and shortness of breath. we saw her ped today who consulted with the orl and they decided to giver her one more 4 day round of steroids to see if it will clear up or if we are going to need the trach again. he also gave her a racemic breahing treatment (the one with epinephrine in it) and sent 2 of them home with us. he doesnt want to use it unless absolutely necessary tho for fear of rebound swelling being worse than what it was to begin with. im exhausted from sleeping on full alert. mike is giving me a chance for a good long nap but i wanted to post so maybe we could get some prayers going up on al's behalf. we're not against getting the trach again, we just want her to be able to breathe easily, whatever it takes. i cant imagine breathing with so much difficulty, she is such a trooper--i would be in tears. deb
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Grateful thorns have roses 24 weeker now almost 11 years old and in third grade! trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08 [IMG] [IMG] 
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#2
07-05-2005, 12:51 PM
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Deb,
More ((((HUGS)))) and we will definitely be sending some prayers your and Alli's way. It is so hard to watch our children struggle to breathe. I hope you can get some rest! Please keep us updated as you can.  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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#3
07-05-2005, 12:52 PM
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Deb,
You and Alli are in my prayers. Hopefully the steroids will help clear up what ever is going on and she won't have to be re-trached but I agree with you, the important thing is to make sure that she can breathe easily. Brandin has been doing alot of retracting himself lately and his doc ordered neb treatments every four hours. They seem to be helping but I wish there were something that I can do to make it easier for him. I know his is still trying to recover from a lung injury that he sustained over a year ago. Despite the labored breathing he is still active and playful. Our kids are so amazing! Lyshae
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Mom to Brianna (8) and Brandin (3): BVCP (resolved 07/04), Pierre Robin Sequence (small jaw), G-tube
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#4
07-05-2005, 01:01 PM
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Sending many prayers to you all and Ali.....let's hope that this next round of steroids really make a difference! You have all of us thinking of you and pulling for your little angel
Michelle
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Michelle, Marisa's Mom, 27 week preemie, trached from 11/03 - 9/04 for severe subglottic stenosis, LTP 9/04, right hemiplegia (Grade IV left IVH/PVL), survivor and my hero with the most beautiful smile! http://www.freewebs.com/marisanicole
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#5
07-05-2005, 01:04 PM
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Hang in there Deb! Prayers for Alli... It's got to be tough right now. Hope for better days soon!
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. Photography website: http://pricelessmemoriesphoto.com/ 
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#6
07-05-2005, 01:31 PM
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Lots of prayers for Ali. What a wonderful little girl you have. They are so much tougher than us!
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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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#7
07-05-2005, 02:55 PM
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Deb
Get some rest! Â*We are all sending many prayers for Alli and your family hoping she improves. Â*Hopefully, this will do the trick! Many prayers and positive thoughts coming your way! Whitney
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 Mom to twin boys, Alexander and Aidan born on April 1st, 2003. They are former 25-weekers. Alex was trached from 10-03 to 4-05. Also mom to my lovely new daughter Amelia born August 19th, 2011!
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#8
07-05-2005, 03:04 PM
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prayers, good wishes, hugs all going alli's way. i hope this round of steroids does it...
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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#9
07-05-2005, 03:13 PM
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Hi Deb,
Add us to the list of people who have you and Alli in our thoughts and prayers. I hope she is feeling better soon! Please keep us posted. Love, Erica (Lily's Mom)
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 Our fabulous Lily was born 5-26-01 with partial trisomy 7q, Pierre-Robin sequence, VSD, GER; had trach, GT, Nissen at 4 weeks, cleft palate repair at 6 months and 18 months. Decannulated 11-15-04. Proud big sister to Benjamin 10-10-03, baby Vivienne 3-5-07!
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#10
07-05-2005, 03:39 PM
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I do hope Alli is feeling better. I am thinking of her and wishing her well.
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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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