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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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#31
03-09-2008, 12:04 AM
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 Nothing worse than your little boy in tears!!!
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Dawn  former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 -  Follow decan at: http://sleepy-dogs.blogspot.com/ 
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#32
03-09-2008, 07:44 AM
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Oh geez Kerry! I hope all the good thoughts and prayers coming your way make a difference!
Much love, Christy xo
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Christy, Mom to Murphy, (8), Harlie (6) and Cooper (4). Harlie has Goldenhar Syndrome & VACTERL Assoc. Missing left ear/canal, left eye anomalies, g-tube & trached due to underdeveloped jaw, 5 open  surgeries, three jaw reconstructions (still trached, though), spinal fusion surgery, 30 surgeries total so far. www.lifesinceharlie.blogspot.com [IMG]  [/IMG]
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#33
03-09-2008, 09:18 AM
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Poor Milo and poor you!!! I really hope Milo is better soon Kerry!! Make sure you get some rest too chicky. And keep us updated!!!!!!
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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#34
03-09-2008, 09:30 AM
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I'm so sorry. I hope Milo is better soon. An ambulance does take care of the the ER wait.
Please update when you can.
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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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#35
03-09-2008, 09:43 AM
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Im so sorry you guys are going through this,its soooo hard,when Ayden had RSV they sent him home too early too & 1 1/2 days later he had a full blown asthma attack(he doesnt have asthma)& they admitted him again & pumped him full of IV steroids & he responded right away,I pray your guy does too.Stay strong........Angie
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 Ayden 6 yrs,tracheomalacia,G-T,nissen,rare type dwarfism ,resolved pierre robin,bronceomalacia,Single stage LTP May 2008,now decanned!!! .Ava 2 years www.aydenava.blogspot.com
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#36
03-09-2008, 11:54 AM
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Sending thoughts and prayers your way
Lara
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Parents to Isaac, born 12/8/06, idiopathic bilateral vocal cord paralysis, trach'd since 11 days old, repair of acquired tracheomalacia and Decannulated on May 15, 2008, still with some vocal cord paresis (decreased motion)  
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#37
03-09-2008, 12:38 PM
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Kerry, I am so sorry you are going through this. How heartbreaking to watch him cry and the feeling of helplessness you must of felt at that moment. I hope he gets well soon so you can get some much needed good rest. Please keep up posted. As you know we all care alot about you and your boys.
 Stay strong. Angie - mom to Jacob (11) and Meghan (15) severe williams syndrome, epilepsy, tachycardia, asthma, reactive airway disease, trached 10/07 due to blocked upper airway, laryngomalasia, non functioning epiglottis causing chronic aspiration, NPO forever, nissen, g-j tube, and recently undergoing testing for mitochrondrial disease 
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#38
03-10-2008, 05:10 PM
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anyone had an update i missed? 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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