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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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#11
07-20-2005, 07:58 PM
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I'm glad that Ali is handling the trach well. Thats so good to hear!!!
Beautiful pics too! Annette
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Annette, mom to Ashley born May 13/03, pfeiffer syndrome type 2, cloverleaf skull, g-tube, fundo, shunt, dev. delay, seizures, untreatable central apnea. Decanned September 3/09!!! Also mom to Mitchell born Feb 27/08, perfectly healthy. They've made my life complete.   
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#12
07-21-2005, 12:38 AM
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Deb - I'm glad you are at peace with the trach. You are an amazingly strong person to remain so positive despite having the trach placed again. It is GOOD that Alli is no longer struggling. I hope things calm down for you and stay that way. You deserve a BREAK!
 Ann
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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) Jack's Journey and Then Some TouchStones of Compassionate Care The Willow Tree Foundation   “Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true”
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#13
07-21-2005, 05:27 AM
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Deb,
Alli looks great! I love the pictures...especially Elmo all doctored up. I'm glad you are doing well despite the disappointment of having the trach again. She looks like she is doing well and doesn't seem like the surgery phased her at all. I've thought about you all so much. Glad she's breathing much easier...that I'm sure is a relief in itself. 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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#14
07-21-2005, 02:00 PM
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Hi Deb
Glad Alli is doing better with the trach. I know it must have been disappointing having to have a trach again, but you've done it before, and if it makes breathing easier for Alli then it must be a good thing. Take care 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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#15
07-22-2005, 09:21 AM
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I am very glad that Alli is so much more comfortable. What a relief. Too bad the trach is necessary, but Alli knows what she needs.
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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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#16
07-22-2005, 10:10 AM
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That's great! I'm so glad to hear that she isn't working so hard just to breathe anymore... if she needs the trach, then she needs the trach... it sounds like you're fine with whatever makes Alli the most comfortable
 She is ADORABLE...
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#17
07-22-2005, 07:38 PM
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Thanks everyone for the support and understanding.
I just can't be upset about something that helps her feel better. Some family members have questioned why we did it, and cant seem to "get it" that if you are working so hard to breathe, well, that's probably ALL youre doing. Oh well, WE know it was the best thing. It may be that all she needs is more time to grow. That has gotten her this far, and I feel it will continue to improve her situation. MORE GOOD NEWS: Alli is now tolerating 1100 cal thru her g tube overnight! She is finally taking in as many calories as the ped wants. Potty training has stalled, but I guess she's had a LOT going on, huh? Hugs to everyone, 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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