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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
05-20-2008, 03:34 PM
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It's been 1 hour and 30 minutes...
Since I started giving Tommy's PMV another try. He's doing it!!! He's coughed about 3 times, but he's opening his mouth and the PMV isn't popping off. He's breathing completely through his nose. I checked....
 His only small issue is that every time he coughed, secretions came out of his nose and startled him. I have his old bulb syringe from the NICU and helped him blow his nose a little bit and wiped him up. He was fine after that. He's playing and content! I emailed Dr. White and told him everything. I don't think a modification is neccessary under these new circumstances. I'm glad I gave it another shot after a nice PM from Karin about her experiences with Alex. Now to get him to laugh again!
__________________
Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.  Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/ 
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#2
05-20-2008, 04:04 PM
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Doing the happy dance for both of you
Hugs, Roberta
__________________
Married to Merrill...33 years...Blessed Mom to 21 as of last count...  Michael-33, Maxwell-29, Mallory-27 Justin-23, Marshal-23, Jesse-22, Jeremy-20, Micah-18, Mordachi-15, Jericho-14, LisaMarie-12, Joseph-11, McClain-9, Joey-8, MacGyver-5, Maverick, McCoy 2, his twin sister Macylea and the youngest Montana 16 months. Malachi and Jason-in Heaven watching over us all. http://www.merrillsimonfamily.blogspot.com/
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#3
05-20-2008, 04:06 PM
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2 hours!!!
__________________
Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia. Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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#4
05-20-2008, 04:32 PM
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3 hours????? Way to go Tommy. You are true trooper
Michelle
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Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps https://www.babiesonline.com/babies/c/cedric1/
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#5
05-20-2008, 04:34 PM
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WOW! That is quite the progression! Way to go, Tommy! You've MADE MY DAY!
__________________
Karin Alex's Mom Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/ 
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#6
05-20-2008, 06:40 PM
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He started falling asleep after 2 hours, so I took it off so he'd take a nap. We will start over again bright and early tomorrow, right after trach care!
__________________
Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia. Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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#7
05-20-2008, 08:39 PM
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Excellant news. Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel. 
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#8
05-21-2008, 03:28 PM
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Excellent news! Way to go Tommy
Juliexx
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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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#9
05-21-2008, 05:01 PM
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We got 4 hours today!!!! I took it off when he fell asleep for his nap. I got him to say "Ha" a couple of times for me, but it sounded like he was talking into a glass of water. Too many secretions to talk around. The front of his chest is drenched with secretions coming from around his trach, and when he coughs, he gets huge mouthfuls of secretions that he can't figure out how to swallow, since he's never done that either! BUT he tolerated it and we kept it on all day long!
__________________
Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia. Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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#10
05-21-2008, 05:10 PM
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Boy, does THAT sound familiar. (Except for the "ha" part. We haven't gotten there yet.)
__________________
Karin Alex's Mom Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/
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