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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
03-06-2004, 08:27 AM
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Jacob was scheduled to get his trach out on April 20th, but he has learned a wonderful new skill: he removes it himself several times a day! I think that he has figured out that he can breath better when it's out, so he just takes it out (he's capped). He likes to do this especially when he's coughing. I guess that I would, too, if I had a chunk of plastic in my airway. Anyway, the ENT is considering taking it out sooner to prevent infection and scar tissue from forming. So, I'll keep you all posted. Also, they told me that if he takes it out and we can't get it back in to just leave it out and pack our bag for the hospital - at this point he would be fine and they would just watch him over night. WOW!
-Shari
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Miracles Do Happen!!! Jacob's mom, 3 yr old with DiGeorge/VeloCardioFacial Synd., TOF with APV, trached 9-11-01, G-button, LTV 950 for 2 1/2 years. Decannulated April 12, 2004!!! 
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#2
03-06-2004, 09:08 AM
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How exciting! Good for Jacob for figuring out that he likes it better without the trach. I'm so excited that your trach journey may soon be at an end! We look forward to seeing a trach-free Jacob at the conference in June.
 Ann
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Ann-mom to Jack- 14 yrs old;vent dependent;dystroglycanopathy congenital muscular dystrophy; also mom to Hilary (22), Mary (19) and Eric (10) Jack's Journey and Then Some TouchStones of Compassionate Care The Willow Tree Foundation   “Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true”
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#3
03-06-2004, 09:48 AM
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Cyrus pulls his out too. Â*but his is when he is mad and that is the way he has figured out telling us. Â*Has your ENT ever suggested the chain? Â*The Chain is the beeded mettel that you see with pull string lights like fans. Â*once you get the size for the child you just slip it on you will go threw one flange to the other back to the joining peice. Â*you may notice that you need to keep more lub on their neck this way and maybe a 2x2 folded in half to give the skin a little padding this would go under the flanged on each side. Â*since we have done this with Cyrus he has only one pulled out his trach and that was when the nurse did not get it hocked properly and the trach tie changes go to once a week its something you can ask about not all ENT's will do this.
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#4
03-06-2004, 11:14 AM
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Shari,
I am so excited for you. It brings tears to my eyes every time one of the children on this board gets decannulated. Happy tears that is because I am sooooooo happy for the parents and the child. Good luck in your "new" trach free life when it "officially" happens. ________ Homemade vaporizer no light bulb Last edited by Jessica's Mom : 04-05-2011 at 04:35 AM.
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#5
03-06-2004, 02:09 PM
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Yay, that's great!
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Amanda Mom to: Anthony (5 yrs. old) and Jadyn (2 yrs. old) Jadyn's page on tracheostomy.com
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#6
03-06-2004, 09:53 PM
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Jacob wears the chain - he's figured it out, anyway! He can't pull the chain off, but if he raises his neck up and pulls on the trach, he can get the canula out... go figure!
 -Shari
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Miracles Do Happen!!! Jacob's mom, 3 yr old with DiGeorge/VeloCardioFacial Synd., TOF with APV, trached 9-11-01, G-button, LTV 950 for 2 1/2 years. Decannulated April 12, 2004!!!
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#7
03-07-2004, 09:47 AM
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Wonderful news! Isn't he just so smart?!
 Jacob is surely ready to have it gone. Good luck with everything.christy
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Gaithy's Mom:28wk preemie born 8/2000 at 1 LB, IUGR, SGA, ROP, BPD, g-tube/nissen. Trached 4-2001 and LTV950 ventilator until 5-2003. Decannulated 8-3-04
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#8
03-09-2004, 09:54 AM
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Good news, Shari. Wish your Jacob lots of luck and a trach free life soon. Our Jakob likes to hook his finger under the trach tube wing and look at us momentarily. When he starts to try to pull it out, the starts gagging and choking and then he stops.....
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Jakob, born Dec 02, Pfeiffer Syndrome, trached at 5 wks age due to mid-face hypoplasia, cranial vaultx2, monobloc, mid-face distraction, g-tube, pyloric stenosis, nissen, nasal stents, VP shunt, tonsils, adenoids, uvula all removed, tongue suspension, future pilot!!
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#9
03-09-2004, 04:21 PM
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Shari,
Sounds like Jacob is trying to tell you something! I hope he is trach-free very soon! We're so excited for you. Keep us posted! Erica (Lily's Mom)
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 Our fabulous Lily was born 5-26-01 with partial trisomy 7q, Pierre-Robin sequence, VSD, GER; had trach, GT, Nissen at 4 weeks, cleft palate repair at 6 months and 18 months. Decannulated 11-15-04. Proud big sister to Benjamin 10-10-03, baby Vivienne 3-5-07!
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