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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
05-03-2007, 12:00 PM
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Score another one for mommy intuition.
Parker just got out of the OR. The bronc showed that his vocal cords are in perfect order, but unfortunately, he has a granuloma that was flapping across the entire airway. They debated trying to remove it today but decided it was too risky given his age and size and the fact that it isn't causing any trach change trouble at all.
The assumption is that he will be big enough for surgery by age 1. We will obviously keep a close eye on any changes that might mean he needs surgery earlier or that the granuloma is shrinking. So, we are disappointed, but I have to admit that I suspected this was coming. As you might recall I posted a few weeks ago about his turning a bit blue and not appearing to have any air pass up over his vocal cords during trach changes. Well, now we know why. Anyone had a tiny baby with granuloma tissue inside? Does it tend to shrink? He had one quite large granuloma on the outside that got alarmingly large in a matter of days and then shrank away to nearly nothing over a few weeks. I'm hopeful that that might be the same for the one on the inside? Is that pie in the sky thinking? I'm off to take over my turn at the bedside in recovery. 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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#2
05-03-2007, 12:05 PM
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Suzanne,
Well that's a bit disappointing. But on the up side. Now that you know what the problem is you can check how that's doing by covering the trach periodically or at trach changes. Maybe it'll clear up and not require surgery at 1 year. And the super exciting part is that you now know why there was little sound and there is no reason to think that he won't speak one day. That is FANTASTIC! But of course the waiting sucks. Susan
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SUSAN - Mom to Ainsley (age 6 - DOB 10/18/06) + Evie (age 12) and Adrian (age 9). Adorable and Trached since 11/06 (scarred vocal cords & OSA) but capping with mixed success since 1/09, sagittal craniosynostosis (cranial reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, unusual form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery). Blog Link: http://ainsleyrae.blogspot.com/ 
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#3
05-03-2007, 12:06 PM
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 Hugs for you Suzanne! I wish it would have been better news. I'm ecstatic about his vocal cords moving though! Hang in there sister! Sarah
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Sarah, Mommy to Malakai (9), Aubrey (8), and Keturah (6) trach, vent, Chiari I, BVCP, CCHS http://s109.photobucket.com/albums/n73/lovemymak/  
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#4
05-03-2007, 12:20 PM
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Hugs, but good news about talking one day and vocal cords moving!!
One step forward, two steps back, but we'll get there someday.... 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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#5
05-03-2007, 01:15 PM
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Sorry, it wasn't exactly what you were hoping for, but the good news is that his vocal cords are moving and the time will fly by.
Juliex
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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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#6
05-03-2007, 01:43 PM
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Ugh. Good and bad. It seems a lot of our experiences are that way, huh? I am sorry that today didn't go better. Hopefully things will resolve themselves and you can get that better result soon. I hope his recovery goes well and you get home soon.
Thinking of you, Christy
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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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#7
05-03-2007, 03:15 PM
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So sorry to hear the news... why can't it just be smooth sailing for our little guys???
 But at least you know what you are up against vs an unknown diagnosis. It's only a few more months. No history of gruanuloma inside to help you though, sorry. Thanks for the update!
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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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