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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
07-17-2011, 05:50 PM
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What do you think?
This could end up being a long post so please bare with me..Dylan had LTP surgery done nearly 2 years ago now..it went great & only reason trachy was left in was because of his grade 3 anterior larynx..Airway looked great for over a year then during an MLB last Aug Dylan needed lasering done as some signs of scarring had developed..we were told that he would need to be seen every 3 months to keep check on it & more lasering if needed..
Since then we were cancelled 5 times due to no bed available as Dylan needs isolation room..i must admit i left it go as i was pregnant & myself & Dylan had been sick for about 2 months & wanted to make sure he was well enough for theatre..(They didnt know this though).. I finally contacted them in April as i was due mid may & wouldn't be travelling up for a month or so after as i was having a c-section..they slotted us in the following week near end April..after that MLB we were told airway was bad again back to a grade 4 stenosis & was lasered & dilated by ballooning..we couldn't believe it!! I am now wondering did this happen because they left us go 8 months instead of 3 months..or would it had happened anyway?They said we would be back up in 2 months which turned out to be 3 months as Dylan was chesty a month ago.. My husband drove up early fri morn with Dylan for theatre that day as no bed was available till the afternoon after surgery..it was my first time not ever going as i had to stay home with baby & older brother.. They said that airway is now so bad that they want to see Dylan again next month for more balloming but its looking likely he will need more reconstruction done & will have to meet up with the surgeon in clinic to discuss this.. It looks as poor Dylan will need to get CTR surgery done..anyone have experience with this surgery & was it a success..How long is the surgery & what was the recovery like?I really cant help wondering that if we hadnt been left so long & been seen in Nov instead of April this may not have been required.. Im interested to see what you all might think..thanks in advance!! What do you think?
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 Marie-mum to 3 boys -Ben(May 05) Marc(May 11) & Dylan(Sept 07)-Tetralogy of Fallot(repair may 08),Trached due to severe subglottic stenosis(July 08),G-tube(oct 08),Nissens(Feb 09),First Stage LTR(Aug 09),CTR(Nov 11).
Last edited by mum2dylan : 07-17-2011 at 05:54 PM. Reason: Typing error 
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#2
07-17-2011, 10:13 PM
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No advice since cilly isn't getting any airway repairs yet. Just wanted you to know that I will say many prayers for your little guy.
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 Kara. Mom to Bailey (3/14/2006), Mason Premie (09/17/2007), and Cillian - Digeorge Syndrome, Tetralogy of Fallot, ASD, VSD, Pulm artresia, non functioning pulm valve (replaced with human homograft valve 8/2011), mild tricuspid valve failure (repaired 8/2011), tracheostomy, g tube, nisson fundo, double hernia surgery, submucosal cleft palate, aortic stents, pulm hypertension, tracheobronchial malacia born 1/10/2009. Three sweet angels.
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#3
07-18-2011, 02:19 AM
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I'm no expert of course Marie, as Sam didnt need any reconstruction surgeries, however it does sound to me like it would have happened anyway. during that time he would have been seen twice and probably more lasering each time so it certainly wouldnt have been as bad at this point but probably would have still needed more done. I'm sorry this is not what you were hoping for following reconstruction
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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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