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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
08-13-2009, 04:35 PM
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quick update re em's LTR
we were reviewed in clinic this week. everything is looking good...she isn't aspirating much anymore and her voice is slowly coming back (cannot tell you what a relief that is). she is eating so much better, and has even more energy than before! they even offered decannulation next week but i have to get back to work and we have to get back into some kind of normality before going back to hospital.
can't believe it's over.
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*clare. mum to emily  12/02/07 (placental abruption)APGARS 0+1 (HIE gr.2/seizures) but she MADE IT! with the determination that we still see in her every day. Grade III SGS - emergency tracheotomy July 2007. 2 stage LTR July 09 - DECANNED 27.9.09 tracheomalacia (GONE!! Sept08) partial agenesis of the corpus callosum residual VSDs post-surgery but lung pressures normal (Nov08), ?septo-optic dysplasia. 
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#2
08-13-2009, 06:01 PM
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I hope everything continues to go well for you all
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Kristy Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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#3
08-13-2009, 08:28 PM
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So nice she is doing well, and eatting better.
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 Lynn, mother of Brooke(19), Haely(17), Sydney(12)Dominic(1) and Joseph(DOB 11/03/06)DX:Jeune's Syndrome:trach 12/12/06:vent depend: Sprinting 12 Hrs a day!!!!EE:GERD:Hydronephrosis:Situs Inversus:Aortic Stenosis:Myocardial Hypertrophy:Kidney Transplant 08/18/10 http://www.caringbridge.org/visit/josephmollica
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s and well wishes.|
#5
08-13-2009, 11:41 PM
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Sounds very promising! Can't wait to see her cute little naked neck!
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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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#6
08-13-2009, 11:55 PM
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Wow! Well done!
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#7
08-14-2009, 07:08 AM
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Good progress! I know you are relieved about the voice. Whew!
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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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#8
08-14-2009, 08:11 AM
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Woohoo! fantastic news
 can't wait to see her naked neck!
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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
08-14-2009, 08:15 AM
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Great news Clare!!!
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Angela - mom to Zach 14, Jake 12, Nick 9, & Kate 9/28/06 Pierre Robin Sequence, Stickler Syndrome, decannulated July 4, 2008 -- Kate's blog http://pieceofkateb.blogspot.com/ 
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#10
08-14-2009, 02:32 PM
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This is absolutely wonderful news!! I can understand you wanting to let the dust settle a bit longer before decan, but it's so positive that they want to try it already.
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Kate, Mum to: Angus 27/6/04-24/11/10 My star of a boy who was vent and O2 dependent 24/7. One of the loveliest kids you could ever have met. Pics and vids Blog Juliet 28/9/99 perfectly healthy and beautiful Alasdair 28/9/10 Delightful, easy-going boy I'm a 'dawk'  
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