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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. |

02-25-2007, 06:07 PM
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Senior Member
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Join Date: Feb 2007
Location: Seattle WA
Posts: 6,484
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Ainsley is 4 months old. Has a trach (no vent). She has been home 2 months. She has never needed oxygen and we have not used the ambubag. We were told to bring them with us everywhere we go. But, I am wondering if it would be good enough just to keep it in the car. It would just be nice to travel a little lighter. What do you think?
Thanks,
Susan
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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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02-25-2007, 06:37 PM
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Mentor
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Join Date: Dec 2003
Location: Denver, CO
Posts: 5,387
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After everything my kids went through, I always ventured on the side of caution. Maybe you can run the question by your doctor... but you never know when things can go wrong. Aidan hasn't needed O2 for almost 4 years until last week.
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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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02-25-2007, 06:45 PM
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Senior Member
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Join Date: Nov 2003
Location: Texas, US
Posts: 5,835
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I think I would want to be on the safe side. I know it is a lot to carry, but you just never know.
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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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02-25-2007, 06:56 PM
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Member
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Join Date: Nov 2005
Location: Flushing Michigan
Posts: 115
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When Alex first came home I brought oxygen everywhere, but he was on it continuously. Once he came off it during the day I didn't bring it everywhere, but I was very comfortable with his sats, even when he was napping. It took a while to get to that point though. Now Alex has been on back on O2 continuously for a little over a month it will take me a while to be comfortable to go anywhere without it.
As for the ambu bag I have never used it (other than training in the hospital) but always bring it everywhere.
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Maureen- Mom to Alex born at 26 weeks (5/9/2005), O2 dependent at night, BPD, 100% Subglottic Stenosis. One failed CTR January 2008 awaiting an LTP in July 2008.
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02-25-2007, 07:38 PM
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Senior Member
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Join Date: Dec 2006
Location: Whitby, Ontario
Posts: 4,063
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Parker doesn't have oxygen. We, too, were told to take the ambubag everywhere. That lasted about a week. Our reality (trach gear and two other young kids - one other in diapers) is that we don't have room to take it, plus it gets all nasty in my bag. I decided that since we can do rescue breaths without it and because Parker is very stable it was a risk I was willing to take.
Now, we've only been home about 2 months, Parker is very young and it is cold, cold winter here. So, when he starts getting out and about more we might just keep it in the car and get an extra for the house.
Suzanne
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02-25-2007, 08:03 PM
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Member
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Join Date: Mar 2005
Location: fairhope alabama
Posts: 845
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we don't have oxygen, and have never used the ambubag but we take it everywhere with us though just in case something were to happen i wouldn't won't to be up a creek without a paddle or so to speak. I would go with a side of caution.
becca
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becca, mom to jonah dob 11-25-03.treacher collins extremely delayed but the light of our lives and very determined to prove everyone wrong especially the doctors.
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02-25-2007, 08:18 PM
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Administrator
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Join Date: May 2002
Location: Phoenix, Arizona
Posts: 7,320
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We always have an ambu bag with us. Oxygen in the car - I can't imagine carrying an O2 tank with me everywhere I go.
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02-25-2007, 08:27 PM
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Senior Member
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Join Date: Jun 2005
Location: Minnesota
Posts: 4,726
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I use to bring it with me ALL the time. BUT, I got to a point where I just kept it in the car. I did talk to Mitchell's doctor about this before doing it though. It is running a risk and I'm well awhere of that--I'm not sure if it is the smart thing to do. I've actually just recently stopped bringing it all together. BUT-I ALWAYS ALWAYS bring an amboo bag-I just put it right w/his suction machine. I guess it just depends on your comfort level--where you are going, and what your doctor suggests. It isn't an easy decision to leave it behind and I pray that I never kick myself for doing it.
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Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT!
www.caringbridge.org/mn/mitchelljohncragg
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02-25-2007, 10:35 PM
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Member
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Join Date: Mar 2006
Location: LI, NY
Posts: 203
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I always bring his emergency bag which has the ambu bag in it w/me. Sometimes I leave it in the car....depends where and how long I will be if I take it w/me. Suction machine and diaper bag comes w/us too.
What will I do when we no longer use a stroller????
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Bobby ~ born 11/28/05 w/Treacher Collins Syndrome
G-tube, reflux, BAHA (bone anchored hearing aid w/a softband), cleft repair
3rd attempt for Jaw distraction surgery successful
airway is 85-100% open!
sleep study all good..
DECAN JULY 15TH!!!
Naked Neck club member!
Finally home w/us since he was 7 months old.
www.caringbridge.org/visit/bobby
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02-25-2007, 11:39 PM
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Senior Member
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Join Date: Jun 2006
Location: Louisville,KY
Posts: 1,179
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Even though Sebastian is stable and not on O2 ( except a lil' at night when he is without his pmv) we keep a tank stashed in the trunk of our vehicle and his emergency kit bag never goes more than 5 feet from him - house rules. Only had to employ it once - thank goodness.
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May Mommy to Sebastian(1-24-06), hardcore former 26 wk preemie, had and kicked butt of many issues, dealing with a few more , including autism. Trached 4/16/06 @ 3 months due to severe BPD and mild Tracheomalacia. Decanned 9-9-09 and doin' just fine !
http://sebastiansjourney.blogspot.com/
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