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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
04-05-2002, 12:56 PM
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Hi. I am being told that I must cap my daughter all day before she can be decannulated and I really don't feel comfortable doing this. She gets very upset and I just don't think that it is a good way to do it. I have talked to the doctor about it and that is the only way he will decannulate. I read on a previous post that some doctors do not require this. PLEASE PLEASE PLEASE will someone tell me the name and number of a doctor that does not require capping. I just want to talk to another doctor about this. I AM DESPERATE! Thank You!!!
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#2
04-05-2002, 02:49 PM
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We are in Oklahoma...our ORL surgeon is Dr Keith Clark at The OU Physicians Center. Their # is (405)271-7559. He understands how much space the trach itself is taking up in Alli's airway and so far isn't insisting that we cap...we ARE able to do it for up to 1 1/2 hour with no problems (she gets tired and cranky after that) and we can also completely remove her trach and she does great. We're hoping to decanulate in MAy when we see him next. Good Luck! Deb
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Grateful thorns have roses 24 weeker now almost 11 years old and in third grade! trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08 [IMG] [IMG]
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#4
04-06-2002, 09:26 AM
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Hi,
I would try to get another opinion if your doctor is basing decannulation only on your being able to cap your baby all day. That sounds like he/she is just coming up with some arbitrary qualification to take the trach out. I don't think capping is that accurate of a measure of being ready to decannulate; it's dependent on so many factors. I think half the time the doctors don't have any idea what they're doing so they make something dumb like that up. Best of luck to you!! 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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#5
09-28-2004, 07:42 AM
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Our ENT suggests downsizing the trach every month ie: 3.5 to 3.0 to 2.5 etc. He said that will force him to breath more from his nose and mouth. He does not believe in capping.
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#6
09-28-2004, 06:41 PM
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We downsized and capped Patricia's trach 2 weeks ago. Capping is necessary for Patricia, because her airway has a terrible history of swelling and other "use" problems. If we were to just decannulate, we could find ourselves retraching in a short period of time. I believe that the idea of capping has a lot to do with WHY the child was trached to begin with. Also, capping the normal trach won't work well, because of the amount of space it takes up. Downsizing is critical to having a capped trach work well. There is no "ONE WAY" to work with a trached kid, because each one is unique. Any doctor who believes there is a one "simple" cure or method is a bit narrow minded in my opinion.
Our ENT is Dr Ian Jacobs at the Childrens Hospital of Philadelphia. (215-590-4646) Dr Robin Cotton in Cinncinati also works wonders with trach patients. Godspeed Clare
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Mother to 3 Â*Rebekah 12. Patricia 9 and Jacob 7.Â*Patricia--diagnosed at age 4 with VCP/Subglottic Stenosis. Â*Has had T/A, LTP(8/10/01),Trach(2/25/02), 2 trach revisions arytnoid work,vocal chord lateralization(8/10/04) and countless broncs in the last 4 years. Decannulated!! 9/30/05 Â*Patient at CHOP
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#7
09-28-2004, 07:07 PM
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Hi,
I gree with what Clare said. Each child is different. The downsizing is helpful and so is capping. In my case they downsized me to a 1.5 and then capped. I go to Dr Robin Cotton in Cincinnati. He does wonders for kids with trachs. Good luck Robin
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Former 24 weeker, decannulated 2 times, retrached Feb 2006. Mom to 4 crazy kids: Owen 8, Hanna, Bailey and Olivia 6 yr old triplets. Always striving for the perfect airway!  [/url]
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#8
09-28-2004, 10:38 PM
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Just an FYI, the original post to this thread was posted over 2 years ago. Â*
 (Not that the information isn't valuable to others reading it now).
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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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