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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
08-27-2007, 04:56 PM
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Airway and Aspiration Center for Children.
Tommy had his pulmonology follow up today. He's doing great as far as that is concerned. No changes in his O2 requirements or anything like that. We don't have to go back to see them for 3 months, but here's the best news of the day...We have been accepted into the Airway and Aspiration Center for Children.
http://www.medicalnewstoday.com/articles/53464.php Instead of an ENT visit, then a pulm visit, then a GI visit all on different days, this is "one stop shopping". One clinic, all of his doctors in the same place at the same time conferring with each other, examining him together!!!! We don't even have to change doctors, just the way we see them. So unless Dr. White needs to see him for any reason after his bronch on Friday, we are Dr. FREE until October! The longest Tommy has gone without seeing a doctor was one week. Now with the new Airway clinic, that will cut out two other appointments we would usually have monthly as well!
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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
08-27-2007, 07:03 PM
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What a wonderful thing! That will make your life so much better.
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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#3
08-27-2007, 07:13 PM
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That sounds wonderful!!! Sure will make your life easier. Thanks for the update.
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#4
08-27-2007, 07:15 PM
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Great news. That will make your life just a little bit easier.
Suzanne
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Suzanne Mom to: Berkeley (June 2002),Griffin (July 2004), and Parker (November 2006) My family blog: http://www.mylifewithboys.typepad.com Parker's LTP Blog: www.parkersplace.wordpress.com 
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#5
08-27-2007, 08:25 PM
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Why didn't they think of this sooner? It's a great idea. I'm glad you were accepted into it. 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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#6
08-28-2007, 08:26 AM
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Way to go Tommy!!!
 Rene, we have a similar program like that where we live. We don't always do it, since Lucy also sees the cardiologist and needs other appointments anyway, but it has DRASTICALLY cut down on the number of visits. Always a good thing when you're lugging around all the equipment!! Plus, easier and better for Momma! Always a good thing  Sarah P.S. Saw your pics on your carepage. SOOOOOO adorable!! Way to go Tommy with the sitting up 
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Sarah, Mom to TWO-year-old Lucy (severe tracheobronchomalacia from congenital heart defects, 3 open heart surgeries, 2 cath balloonings, hospitalized for 8 months and 4 days but now HOME, trached/vented from 10/06-6/08, G-tube-dependent.) DECANNULATED 8/14/08!! Also Mom to 4-year-old Lizzy (healthy wiley ball-o-energy preschooler!)
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#7
08-28-2007, 11:24 AM
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That sounds like a great idea! Wish we had something similar, I hate the trek to Children's.
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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#8
08-28-2007, 02:10 PM
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That does sound like a great idea. Will has the trach b/c of GI issues and aspiration, not from the other reasons many have on this site. So that would be just a great thing for Will's care.
- betty
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mom to Will, age 14 - 33 weeker, IVH, PVL, now with severe CP, blindness, G-J tube, shunt, trach, baclofan pump - 24/7 care required  Also Mom to lovely Julianna, age 10
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#9
08-28-2007, 06:22 PM
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that sounds like a great program. Best of luck ahead for you guys. i hope that you have much success all the way around. one stop shopping is great when it comes to hospital care and Doctors visits.. Again i want to wish you the best of luck..........
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#10
09-02-2007, 12:00 AM
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That is so wonderful there is such an awesome facility in Charleston! That is only 2 hours from us (if I don't get lost on Route 17)! We're trying to find a place to move to that would be near a good hospital facility. Now we can put Charleston on the list!!!!
Do they have an in or out patient feeding/swallowing clinic?
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