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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
07-15-2004, 03:48 PM
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I haven't really updated you guys on Bobby lately. Trying to stay quiet until things are settled for sure . . . don't want to get my hopes up, you know?? Anyway, he had his tongue reduction surgery one month ago today. It went surprisingly well -- only 2 days in the hospital. Compared to the trach surgery, this was a breeze! His tongue has really gotten a LOT smaller already.
So, today was trach clinic and the docs are all on board for decannulation asap! We start capping today and we actually set a date of August 10 for the hospital stay. I can't believe it!! I had to contain myself to keep from screaming right then. I know so many things can go wrong (I think it was Clare who compared our lives to bumper cars . . . ), but we are hopeful that we are on the right track!! -Barb
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Mom to Bobby, born 10-03, Beckwith-Weidemann Syndrome, trached December 03 due to macroglossia (enlarged tongue) causing upper airway obstruction. Also Mom to Audrey (13) Maddy (11) and Billy (9). Bobby was DECANNULATED 8-17-04 (8months and 1 day with the trach). 
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#2
07-15-2004, 05:20 PM
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Barb, I hope that Bobby is decannulated on August 10th. Two kids, that I can think of off-hand, have just recently been decannulated, then I just read that Alli is on her way, and now Bobby! Gaithy, my daughter, is having a sleep study done on Monday to see how she does asleep with her trach capped. We should be back in to see the ENT the first part of August and get the results then. If all was well, we could be looking at decannulation around the same time as Bobby! That would be awesome! I totally agree about the bumper cars analogy...I'm just waiting for a huge bump, and I know that's bad!!
 Good luck!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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#3
07-15-2004, 06:31 PM
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Great news Barb! Â*I'm glad his surgery went well and I'm praying for a successful decannulation. Â*If it's meant to be . . . it will happen, so SHOUT it from the mountaintops . . . although I completely understand needing to "prepare" yourself for the worst. Â*Think positive.
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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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#4
07-16-2004, 12:00 AM
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I agree about staying positive!! We will keep every appendage crossed
 that he is able to decannulate!! Please keep us updated!! Whitney
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 Mom to twin boys, Alexander and Aidan born on April 1st, 2003. They are former 25-weekers. Alex was trached from 10-03 to 4-05. Also mom to my lovely new daughter Amelia born August 19th, 2011!
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#5
07-16-2004, 12:05 AM
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That is really wonderful and it is so great to hear because I think it keeps hope alive as well for those of us who dream about that day! I hope that Aug 10th comes quickly for you and goes perfectly!
Kelly
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Kelly, mother of , Indira 6 (trach and g-tube)[/color] [/color]and Max 4. [/color]When there is no  you are the reason I bound out of bed. Thank-you for giving me life! See Indie- http://www.tracheostomy.com/trachkids/kids12.htm
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#6
07-16-2004, 06:42 AM
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Great news! All these decannulations - the boards will be empty. Just kidding! I am very excited for you and your family. Please keep us posted!
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Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube. 
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#7
07-16-2004, 07:17 AM
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I hope the decannulation process is an epidemic!! Congrats!!
Can someone, if they dont mind, explain the process to me? We hope to have Jared decannaulated by november or March. What is the process usually? (Trach downsizing, capping, etc?) Also, he is probably going to have a bronch in Sept. He never had one (other than a flexible one bedside) I understand he will probably need to be in the hospital overnight..why is that?
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Abby, mom to Jared (28wk surviving twin), BPD,Bronchomalacia, vent dependent until8/04,Grade 2 subglottic stenosis, gtube, our miracle child! (Decannulated 3/05)
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#8
07-16-2004, 08:00 AM
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Ok...I am getting jealous!!!
 We are actually scheduled on August 10th for Patricia's lateralization...hopefully our LAST major surgery before decan (but we have said that before). It will be an easy date for me to remember to think you and your family. As for the bronc. Patricia's first few bronchs were overnight stays, but she didn't have a trach then, and the stay was to insure that her airway didn't swell shut. Now that we have had about 15 of them...they are in and out...the last one in record time !!! (total hospital time only about 5 hours). I can't speak to decan process, as we have only gotten as far as a downsizing and then capping...and then we had to go back again within 36 hours. I think sometimes the length of capping also depends on the child and the reason for the trach. I know that back in 1968 when my husband was officially decannulated, they decided he was ready when he kept pulling out the trach and playing with it....IMAGINE! My MIL didn't have all the monitors we do today! 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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#9
07-16-2004, 08:11 AM
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Congratulations!!!!! Corey is capped 24 hours a day now and is scheduled for decannulation on August 16th. Hopefully Corey and Bobby can be decannulation buddies (Gaithy too!).
Abby - As far as the usual process: it seems to me like every doctor does it differently. Some start capping during the day for a few weeks and then do an overnight sleep study in the hospital capped and then decannulate. Ours had Corey capped during the day for two weeks and capped 24 hours until a decannulation date could be scheduled. So for us it will hopefully be a total of six weeks capped, but I think that he only really wanted us to be capped for four weeks. He will be on vacation at the four week mark, so we have to wait an extra two weeks. Amy
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Amy - Mother to Corey(4-13-02), 27 weeker (1lb. 10oz.):BPD, Tracheobronchomalacia, Subglottic Stenosis, G-button, been off ventilator since March 2003. Â*Decannulated August 16, 2004 and now g-tube free as of August 10, 2005!!!
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#10
07-16-2004, 08:38 AM
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I am so excited for all of you almost-decannulated families. What wonderful news. I have a question about the process also but I'll start a new topic. Don't want to take away from this AWESOME news. AND keep thinking positive thoughts. Can't wait for the month of August for all of you!!
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Grandma to Jordan and Cody - born at 29 wks - Jordan was decannulated April 17, 2006! 
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