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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
02-02-2009, 02:48 PM
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OMG-surgery tomorrow!
Gabriel's palate repair surgery has been bumped up from March 3 to tomorrow! We agreed to the change because he is healthy right now, and we want to get him moving in a positive direction. Plus, he has 2 all-day growth hormone stim tests in March, so I'd rather have him feeling better for those. Can anyone tell me how long the recovery process is, in general? We were told that he'll only be in the hospital for 1 night, but I'm expecting 2. I'm so nervous...I hope he does ok.
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Gabriel: born 12-07 PRS G-tube and Nissen 1-28-08 Trach 6-06-08 Palate repaired 2-03-09 www.caringbridge.org/visit/gabrielsmith 
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#2
02-02-2009, 03:04 PM
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good luck x
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*clare. mum to emily  12/02/07 (placental abruption)APGARS 0+1 (HIE gr.2/seizures) but she MADE IT! with the determination that we still see in her every day. Grade III SGS - emergency tracheotomy July 2007. 2 stage LTR July 09 - DECANNED 27.9.09 tracheomalacia (GONE!! Sept08) partial agenesis of the corpus callosum residual VSDs post-surgery but lung pressures normal (Nov08), ?septo-optic dysplasia. 
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#3
02-02-2009, 03:04 PM
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My daughter Kate had her palate repaired Dec 07; she was 14 mos. At that time, she was very healthy and learning to eat. She was almost 100% oral during the day and got 3 tube feeds overnight of Enfamil. We alsways let her bottle feed during the day, but she never took more than an oz or 2. Her surgeon told us there was no need to wean her to a sippy cup prior to surgery so we didn't. (She did know how to use a cup though) The repair itself was uncomplicated. Dr. K told us it was was of the dryest he'd ever done: not a lot of blood or secretions. The aftermath was less pretty. Ultimately, it was 12hrs of horror and then ok from that point on. We were discharged from the hospital the next afternoon but only because she had a feeding tube in place. If she hadn't, we'd probably still be there trying to get her to eat and drink.
Kate was on the very, very long road towards eating orally when she had the procedure. It definitely set her back a few weeks. She took almost nothing by mouth for 3 weeks following, but she was happy and back to herself by post op day 3 or 4. She was discharged with Tylenol with Codeine and an abx. We used the Tylenol w/Codeine for 2 nights at home, so she'd get a good nights sleep but after that she didn't need it. I hope this answers your questions. Anymore and I'd be happy to answer them! Oh, and Kate quickly picked up eating again after the 3 weeks. In fact, so much so that she was discharged from the feeding program 12 weeks after the surgery and was 100 % oral (day and night) 7 months post op. Good luck and try not to worry. Even if he looks like crap the first 12 hours, he really will be ok shortly thereafter.
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Angela - mom to Zach 14, Jake 12, Nick 9, & Kate 9/28/06 Pierre Robin Sequence, Stickler Syndrome, decannulated July 4, 2008 -- Kate's blog http://pieceofkateb.blogspot.com/ 
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#4
02-02-2009, 05:38 PM
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Celia was 9 years old when she had hers repaired-no you didn't read that wrong(long story-jerky doctors)-she recovered amazingly, however I think some of that is because she doesn't take anythig by mouth. Her cleft was complete cleft of the soft and a small bit of the hard.
Good luck I will be saying a prayer!!
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 http://mamazgirlz.blogspot.com/ Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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#6
02-03-2009, 11:56 AM
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Wow, that's quick. Hope all goes well
 Julie x
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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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#7
02-03-2009, 04:33 PM
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I am thinking about you guys. Hope everything went well!!!
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Candi Mom of Sam & Gus (9 yo twins) and Luke (born 2/17/07 with CHARGE syndrome - choanal atresia (14 surgeries to open his nose - and counting), hearing loss & developmental delay, trached at 6 days old because his nose was blocked with bone, later diagnosed with subglottic stenosis and laryngotracheomalacia, g-tube placed at 18 months, tonsillectomy 10/08/09, unexpected decan 1/14/10  , now on CPAP for sleep apnea)
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#8
02-03-2009, 09:27 PM
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Hope all went well!
__________________
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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