 |
 |
 |
|
|||||||
| 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
08-07-2012, 05:50 PM
|
||||
|
||||
Prayers please:)
Caleb is finally having his jaw distraction tomorrow at Yale. Keep us in your thoughts and prayers
 hopefully this is the start of our road to be being trach free!
__________________
 Mom to Aven, healthy as anything, 5 and Caleb ,born 39 weeks,9.9.11, Trach, Gtube,Nissen,10.6.11, Mandibular distraction 8.8.11,tonsils/ adenoids 2/27/13, DECANNED 4/18/13!!no official diagnoses,profound hearing loss in left ear,cardiac abnormalities,extra T4 vertebrae. Pierre Robin Sequencehttp://mycalebslife.blogspot.com "For you created my inmost being; you knit me together in my mother's womb.. I am wonderfully made." Psalm 139:13-14 
|
|
#3
08-07-2012, 07:47 PM
|
|||
|
|||
|
Prayers headed your way! Keep us posted
__________________
 SUSAN-mom to Harrison, born full-term(11/1/10) with an undiagnosed congenital diaphragmatic hernia (CDH), hypoplastic right lung (caused by hernia), trached at 4 months, g-tube and fundo at 6 weeks. Home in March 2011. Weaned completely off of the vent in July Wearing PMV 24/7, 02 at night, failed decannulation in October. Hoping for better results next time!www.caringbridge.org/visit/harrisonsnow
|
|
#4
08-09-2012, 05:43 PM
|
||||
|
||||
|
Surgery went well.. Ent replaced his ear tubes, confirmed that yes his tonsils do need to come out eventually , and also that possibly extra tonsil tissue may be accounting for his excess need for suctioning. The jaw distraction took 2 hours and went perfectly. He was bleeding and in a lot of pain yesterday ( day of surgery) but what a difference today has been! Although he is majorly swollen and bruised he is in great spirits and much less pain. We turned the distractors this morning and it went fine and didn't seem to
Bother him very much at all. We will turn again tonight and then are bein discharged. Im so happy this is done and we can focus on recovery !
__________________
Mom to Aven, healthy as anything, 5 and Caleb ,born 39 weeks,9.9.11, Trach, Gtube,Nissen,10.6.11, Mandibular distraction 8.8.11,tonsils/ adenoids 2/27/13, DECANNED 4/18/13!!no official diagnoses,profound hearing loss in left ear,cardiac abnormalities,extra T4 vertebrae. Pierre Robin Sequencehttp://mycalebslife.blogspot.com "For you created my inmost being; you knit me together in my mother's womb.. I am wonderfully made." Psalm 139:13-14
|
|
#5
08-09-2012, 08:31 PM
|
|||
|
|||
|
So good to hear that surgery went well. Kids are amazing. Next day after surgery they go back to their old selves.
__________________
 Ana, mom to Aldo. Full term on 10/10/2010. Congenital Anterior Glottic Web & Subglottic Stenosis. 10/29/2010 Single stage LTP; web removed. Reconstruction surgery was a success but Aldo developed edema below the vocal chords and continued struggling to breath. Tracheostomy on 04/01/2011. Eats by mouth. High blood pressure resolved (it was probably due to hard breathing).
Last edited by principe : 08-09-2012 at 08:34 PM.
|
|
#6
08-10-2012, 01:29 AM
|
||||
|
||||
|
I'm glad to hear things went well. I wish him a speedy recovery.
__________________
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/ 
|
|
#7
08-10-2012, 09:24 AM
|
||||
|
||||
|
So glad things went well...how long do you have to turn the distractors?
__________________
 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
|
|
#8
08-10-2012, 11:12 AM
|
||||
|
||||
|
We turn the distractors for 20 days, the goal is 20 mm or 2 cm. The hardware will stay on an additional 3 or so weeks after that.
__________________
Mom to Aven, healthy as anything, 5 and Caleb ,born 39 weeks,9.9.11, Trach, Gtube,Nissen,10.6.11, Mandibular distraction 8.8.11,tonsils/ adenoids 2/27/13, DECANNED 4/18/13!!no official diagnoses,profound hearing loss in left ear,cardiac abnormalities,extra T4 vertebrae. Pierre Robin Sequencehttp://mycalebslife.blogspot.com "For you created my inmost being; you knit me together in my mother's womb.. I am wonderfully made." Psalm 139:13-14
|
|
#9
08-10-2012, 12:49 PM
|
|||
|
|||
|
Interesting that your son is so young and having this surgery. My son has a small jaw and a recessed palate. (among other things) we have been told that he should have midface advancement surgery when he is older, like 5 or 6 years old!! He is currently almost 16 months and I can see that is several months older than your son. I hope everything continues to heal well. have they indicated whether his trach can come out soon?
__________________
 Christine (and hubby keith) Mom to Juliette born 6-2-05 at 29 weeks but just 8 wks in Nicu and physically ok. just dx (6-2012) with learning disability. Sean born 4-13-11 dx. pyriform aperture stenosis, trached 6-14-11, metopic and rt. coronal craniosynostosis (surgery 10-31-11), hydrocephalus -ETV surgery 2-17-12, G-tube 4-30-12, new dx 6-22-12 posterior choanal atresia and subglottic stenosis. also told on 2-1-12 midface hypoplasia
|
|
#10
08-10-2012, 05:56 PM
|
||||
|
||||
|
Our particular surgeon does these surgeries primarily on newborns to avoid trachs.. Caleb is actually older than the patients he normally distracts. We should have had this surgery when he was born but we were in a terrible hospital that had no idea what they were doing...anyway.. Yes, the trach is expected to be able to come out after all the hardware is out and we will start working on capping . They think it should be fat because his jaw is coming out about 2 cm which is pretty significant and he will have a big airway with no blockage by his tongue. That's the plan, I know it doesn't always go that way but I'm praying with everything it does.
__________________
Mom to Aven, healthy as anything, 5 and Caleb ,born 39 weeks,9.9.11, Trach, Gtube,Nissen,10.6.11, Mandibular distraction 8.8.11,tonsils/ adenoids 2/27/13, DECANNED 4/18/13!!no official diagnoses,profound hearing loss in left ear,cardiac abnormalities,extra T4 vertebrae. Pierre Robin Sequencehttp://mycalebslife.blogspot.com "For you created my inmost being; you knit me together in my mother's womb.. I am wonderfully made." Psalm 139:13-14
|
|
«
Previous Thread
|
Next Thread
»
| Thread Tools | |
| Display Modes | |
Linear Mode
|
|
All times are GMT -5. The time now is 02:48 AM.