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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
03-20-2007, 04:41 PM
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ENT visit
We saw Sam's ent today for the first time since he was scoped. he said that Sam's airway looks fine, but still to narrow for him to consider decannulating (which we knew anyway). He also said that Sam's vocal chords were fine and he should be able to speak. He blocked the trach for a while and said he could feel the air moving so was happy that there was plenty of air entry to enable him to make sounds. so that was all good. he will see him again in 6 months time and scope him early next year. He was glad that he had been able to remove the granulation and said that it should help with communication. Finally he said that Sam was unique - he had never seen an airway like Sam's in 30 years and was unlikely to see one like it again!!
 My comment "I don't want him to be unique, I just want him to be ordinary" 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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#2
03-20-2007, 04:45 PM
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I'm glad Sam's visit went well, even if he is "unique". I love that clown nosed boy! Hopefully he will be able to tolerate a PMV soon and start talking up a storm!
 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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#3
03-20-2007, 04:52 PM
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Yes, I know hearing the sound of my little peanut it something I am on pins & needles for. He has a pmv and has made a few sounds, Its the best, I hope you get to experience that really soon!
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  Cathy Mom to Justice 7/02 never stopping mad man, and Jordan 2/04,c.p. trach. Tracheomalacia, gj-tube, reflux w/nissen, seizures, spasticity.... & it's official the epilepsy dx. LOVES Sponge Bob, birthday party's,& misses school  http://jordanakapeanut.blogspot.com/
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#4
03-21-2007, 11:32 AM
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Glad you had a good visit hope he can wear a pmv soon!
mandi
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Mandi mom to Alissa Former 24weeker born 2-25-04 trached May 04. Had Ltp 11-28-05 Now trach free. Also mom to Makayla age 8 and summer2 www.caringbridge.org/visit/alissa
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#5
03-21-2007, 01:23 PM
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I hope you hear him chattering away in no time. I'm glad the ent visit went well. Sam is a superstar!
I know what you mean about being ordinary--wouldn't it be lovely...
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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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#6
03-21-2007, 02:32 PM
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Ok, I've seen that face......he can be ordinary but you have to add extra to that word.
Kxoxxo
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Kelly, mother of , Indira 6 (trach and g-tube)[/color] [/color]and Max 4. [/color]When there is no  you are the reason I bound out of bed. Thank-you for giving me life! See Indie- http://www.tracheostomy.com/trachkids/kids12.htm
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#7
03-21-2007, 06:23 PM
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Julie: Thanks for keeping us updated on Sam...he is a character for sure. I have not seen the bigger picture with his clown nose on...is it out there some where? Joseph make so few sounds at all. He has just turned 7 and now they are afraid he will not make any even if we get his trach out
Have a super day and "see ya again" Roberta
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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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#8
03-21-2007, 06:46 PM
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Well, I'm glad to hear that he should be able to make progress off the trach, but somewhat bemused by what's so different about his airway. Sweeping statements like that would irritate me - I need specifics - and like you said, who wants their kid to be unique if it means they need artificial means to keep them alive??
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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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#9
03-21-2007, 08:48 PM
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Quote:
Remind us to cross our fingers in 6 months!
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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo!  The Birthday Boys by TwinTransfusion, on Flickr
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#10
03-22-2007, 02:31 PM
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Julie, I am sorry you didn't get the news you were hoping for. I hope next time brings better things for you. Hugs
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 Mom to twin boys, Alexander and Aidan born on April 1st, 2003. They are former 25-weekers. Alex was trached from 10-03 to 4-05. Also mom to my lovely new daughter Amelia born August 19th, 2011!
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