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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
06-21-2005, 08:55 PM
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I read a post a few weeks ago, I think from Ann...someone was decann while still on 02? Who has experience w/this?
Kerry
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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo!  The Birthday Boys by TwinTransfusion, on Flickr 
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#2
06-21-2005, 09:51 PM
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I personally don't have experience-but a trach mommy in the area has a daugher with a trach and on O2. Anyways, she is going to be decan. soon and they told her if she still needed O2 she would just be on a nasal cannula. They still planned on decan. her even if she still required O2. I wish I knew more to tell you.
Lora
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Lora - Mom to Zoe (12/26/04), former 27 weeker, BVCP, Subglottic Stenosis, mild reflux, g-tube http://www.caringbridge.org/visit/zoeglasel
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#3
06-21-2005, 10:06 PM
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Yes! I need to know about this!
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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo! The Birthday Boys by TwinTransfusion, on Flickr
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#4
06-21-2005, 10:09 PM
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That was the plan for Brian this summer, until he failed his sleep study. We had even been capping him and having him wear a nasal canula to get ready. Now we will hope he is off O2 by next summer. Our ENT and pulmo. were both willing to go through with decan while still on O2.
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Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.  B & C are surviving triplets. Brooke survived for 1 month.
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#5
06-21-2005, 10:18 PM
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The reason being Milo is still on about 25% to almost nothing. He can go a few hours w/out O2 on the HME. His airway is clear. I just wasn't pushing the issue b/c I thought it wasn't a possibility. Now I hear otherwise. I need all the info I can about this and soon.
My pulm says he downsizes, our ENT says she caps. Who is right and who should I talk to more about it? I just thought it was an ENT issue...but since the O2 is still in existence I can see why our pulm might have input. I am totally ignorant about this part of having a trach kid(s). Please educate me!
__________________
Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo! The Birthday Boys by TwinTransfusion, on Flickr
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#6
06-21-2005, 10:20 PM
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PS. I took some cute pics of the boys yesterday if anyone wants to see them I will PM you.
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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo! The Birthday Boys by TwinTransfusion, on Flickr
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#7
06-21-2005, 10:26 PM
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I'd love to see the pictures.
My pulm. and ENT have to agree it is time to decan. My pulm. leaves the downsizing and capping to the ENT. ENT did downsize Brian and we were capping. I have totally stopped capping him since it caused his CO2 to be elevated. I am going to start again towards the beginning of the year. I do know some on here, whose Dr's did not want to decan while on O2. It doesn't hurt to ask your dr though.
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Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007. B & C are surviving triplets. Brooke survived for 1 month.
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#8
06-21-2005, 10:49 PM
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I just sent you a PM, but don't know if went through. I'd love to see the pictures of the boys too!
 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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#9
06-21-2005, 11:06 PM
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I PMed you.
Ann, do you know something about this o2 decann thing?
__________________
Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo! The Birthday Boys by TwinTransfusion, on Flickr
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#10
06-21-2005, 11:19 PM
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I think Whitney's Alex is still on a bit of oxygen at times since being decannulated. Hopefully, she'll see this post and respond. Also, I believe it was Evan (Laurie) who was on oxygen up to the date (or just a week short of) decannulation. Â*Those are the two who come to mind right now. Â*
I LOVE the pictures of the kids. Â*Thanks for sharing. ~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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