 |
 |
 |
|
|||||||
| 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. |
 |
|
|
Thread Tools | Display Modes |
|
#1
09-26-2011, 03:35 PM
|
|||
|
|||
So the decan was a success.....
Dylan went in on Friday morning and Dr. Jacobs did a bronch and a pexy suture (I'm still a bit unclear on what this was for but it was internal and not a suture of the stoma/hole/whatever).
He then went to the PICU and once he woke up and was recovered a little we capped him and he seemed to do fine. So we kept it on overnight and he did fine. Then on Saturday morning they pulled the trach and put gauze over it. Then we stayed for 2 nights (things went fine both nights) and just got home today. After 5 years of the trach, things were strangely anti-climactic. We're glad it's out, and hopefully he'll continue to do fine at home. But I expected to feel more. Granted, he's been capped for 3 years and now pretty much the only difference to our life prior is no mist collar at night and not needing to bring suction with us (I can't even remember the last time we actually suctioned him. At least 6-9 months). But.....we're glad it's out although I'm sure we'll still be nervous for a while with it out. 
|
|
#2
09-26-2011, 06:55 PM
|
|||
|
|||
|
Congrats to you and your family - I hope I have the exact same experience with Dr. Jacob's in the years to come!!!
__________________
Melissa - mom to triplets born 29w5d (8/1/2010) - Neva & Matthew are home and healthy! Jackson - g-tube/fundo (11/10), trach (1/11)
|
|
#3
09-26-2011, 07:13 PM
|
||||
|
||||
|
I'm glad to hear things went well. 5 years trached and 3 years capped. Not suctioning for 6-9 months?! That's amazing. I wish I knew more of your story. We've had a cap 2 1/2 years. Less successfully capping than you I'm sure. I was really impressed when we made it through one day for the first time, not needing to suction. I'm sure life without the mist collar will be great. So I guess then he wasn't capped at night. I hope over the coming weeks the benefits start to become apparent. No matter how used to the trach you get I bet it's nice when it's gone, it might just take awhile to notice how nice.
 Congrats!
__________________
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/ 
|
|
#4
09-26-2011, 09:16 PM
|
||||
|
||||
|
Congrats
 I know what you mean by strangely anti-climactic.
__________________
Kate, mother to Madalynn born full term 5/1/10, laryngomalacia and Left Vocal Cord Paralysis (resolved 1/2011), failed supraglottoplasty  5/17/10, trach 5/28/10, g-tube 6/30/10, home for the first time 7/3/10  decannulated 9/21/11 http://www.youtube.com/watch?v=nUijY...lUI&feature=BF http://www.youtube.com/user/theranso.../0/CJthuhZ3y3U
|
|
#5
09-27-2011, 05:50 AM
|
||||
|
||||
|
Congratulations!
We found decan to be pretty anticlimactic too.
__________________
Janet, cruncy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia  
|
|
#6
09-27-2011, 06:00 AM
|
||||
|
||||
|
Wonderful news, congratulations:-)
__________________
 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.
|
|
#7
09-27-2011, 08:53 AM
|
||||
|
||||
|
Congratulations!
__________________
  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
|
|
#8
09-27-2011, 08:56 AM
|
||||
|
||||
|
Congratulations!!!!!
Glad it went well!!
__________________
Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT! www.caringbridge.org/mn/mitchelljohncragg 
|
|
#9
09-27-2011, 05:40 PM
|
||||
|
||||
|
Congrats!
__________________
Kris 3/24-26wk twin girls born 7/01 at 1lb15 & 1lb13. Rynn-trach. malacia, Grade 1 SGS, reflux, asthma, autism(high funct. Asperger's) & epilepsy. Madelyn-severe trach. malacia, Grade 3 SGS(Trached 10/21/01 to 11/20/11 DECANNED) ,PVL,BPD,CP,submucousal cleft,reflux, G-button(12/01), nissen X2, off vent '03.Two of the most Perfect Princesses! !!
|
|
#10
09-27-2011, 07:13 PM
|
||||
|
||||
|
Congratulations!
__________________
 JENNIFER-mom to Linton (11), Gideon (7), and Linnae (3-born 5 wks early on 3-22-08), PRS, Trach April 08, VSD-repaired Sept. 08, Ear Tubes-Jan 09, Cleft Palate-repaired May 09 (severe complications with tongue swelling-still ongoing issue), Jaw Distraction-June 09, Jaw Distractor Removal-Nov 09, Adenoidectomy-Feb 10, Reflux-resolved, Discharged from P.T. and O.T...hoping for decan sometime soon! http://www.caringbridge.org/visit/linnaeellis1
|
|
«
Previous Thread
|
Next Thread
»
| Thread Tools | |
| Display Modes | |
Linear Mode
|
|
All times are GMT -5. The time now is 04:54 AM.