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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. |

07-06-2007, 03:54 PM
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Senior Member
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Join Date: Dec 2006
Location: Maine
Posts: 1,015
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?How far do you travel for specialists
I was wondering how far others travel for their various doctors appointments?
When Isaac was born we were transferred from our local hospital to a children's hospital in Portland, but they sent us to Boston Children's for his airway. Now that we are settling into life with a trach it's hard to go down to Boston (three hours away) for his appointments, BUT, I feel like I trust them more than any doctors in Maine. Good news is, they have an outreach clinic that is "only" 2.5 hours away, and we'll get to see Dr. Nuss, who is supposed to be awesome. But each visit is also a fight with the insurance to cover out of state care....
Opinions? I guess I'm thinking stick with the best. I was also wondering how far everyone else has to travel....
Lara
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Parents to Isaac, born 12/8/06, idiopathic bilateral vocal cord paralysis, trach'd since 11 days old, repair of acquired tracheomalacia and Decannulated on May 15, 2008, still with some vocal cord paresis (decreased motion)
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07-06-2007, 04:01 PM
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Administrator
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Join Date: May 2002
Location: Phoenix, Arizona
Posts: 7,320
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1500 miles one way from Phoenix to St. Louis Children's Hospital. I'm even contemplating traveling to Florida with Jack to see his former pulmonologist who left St. Louis Children's because, in my opinion, she is "the best" with vent dependent kids. For me, distance/inconvenience is not a deterrent, I have to go with doctors I trust. I do have the advantage of having private insurance that is a national plan - I can go anywhere in the US that takes United Healthcare and pay no more than I would pay locally.
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07-06-2007, 05:05 PM
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Senior Member
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Join Date: Apr 2005
Location: Home of the OU Sooners!
Posts: 4,112
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We go about 30 miles I guess a little less to ours.
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LORI--MOM TO ELLA AND EMMA(born 10-16-04)AND DEREK (born 9-13-01)
EMMA- CP,TRACHED, G-TUBED DEC 2004 AND VENT DEPEND JUNE '05, CORD ACCIDENT DUE TO MONOCHORIONIC MONOAMNIOTIC TWIN PREGNANCY
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07-06-2007, 05:29 PM
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Senior Member
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Join Date: Oct 2005
Location: St. Louis, MO
Posts: 2,824
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we travel 7 hours to Cincinnati from St. Louis for Dr. Cotton and Nathan's eye doctor. These are his only 2 specialists and it's well worth travelling to see them. I would travel anywhere for the kind of care he receives in Cincinnati. 
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Kristy
Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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07-06-2007, 06:49 PM
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Senior Member
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Join Date: May 2004
Location: Virginia Beach, VA
Posts: 1,589
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While in Pensacola we traveled to Biloxi for our GI doc.
Now we go from VA Beach to Norfolk to CHKD. I am contemplating trying to see the man, Dr. Cotton if it comes down to the aortapexy in '09.
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Leslie, mother to Chris (12), Chase (3) and Chad (2) I have 3 boys cause I didn't want 4. Chase- X 31 weeker, Trachea Esophageal Fistula, Esophageal Atresia, Pyloric Stenosis, VSD, Pulmonary Stenosis, Severe malacia (90% occlusion)..one failed decann attempt
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07-06-2007, 07:21 PM
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Senior Member
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Join Date: Jul 2006
Location: Murrieta, CA
Posts: 3,150
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Quote:
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For me, distance/inconvenience is not a deterrent, I have to go with doctors I trust.
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I agree. We have gone from California to Cincinnati for Dr. Cotton and it was the best thing we have ever done. Our normal specialists are ONLY 2 hrs away depending on traffic.
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07-06-2007, 08:00 PM
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Mentor
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Join Date: Jan 2005
Location: Glasgow, Scotland
Posts: 4,109
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I'm in the UK and we drive 20 minutes to get to Yorkhill Childrens' Hospital, maybe 40 minutes in rush hour. I don't think we can complain. However, if we were to move, even to the southern-most parts of England, I would drive up here (9 hours) to see the docs he's used to, and who know his history, for the major things. For everyday stuff, I'd establish a rapport with the local docs.
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Kate,
Mum to:
Angus 27/6/04-24/11/10 My star of a boy who was vent and O2 dependent 24/7. One of the loveliest kids you could ever have met.
Pics and vids
Blog
Juliet 28/9/99 perfectly healthy and beautiful
Alasdair 28/9/10 Delightful, easy-going boy
I'm a 'dawk'
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07-06-2007, 09:11 PM
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Member
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Join Date: Aug 2004
Posts: 840
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My specialists are about 3 hours away-before we moved they were 5...Same thing for my hospital. The local hospital couldn't handle my needs and even if they claimed they could-I wouldn't trust them. The two I see the most often (GI and Pulmonology) have out reach clinics 30 minutes away.
The care is definitely worth it 
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07-06-2007, 09:12 PM
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Senior Member
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Join Date: May 2007
Location: Cochranton, PA
Posts: 4,870
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Call it one-stop-shopping, but Alize gets all of his care at Pittsburgh Children's which is about a 1 1/2 to 2 hour drive depending on traffic. After hearing about Dr Cotton, I'm sometimes tempted but I really have no problems at PCH. They know him well and have treated us all with kindness and knowledge. Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel.
Last edited by alizesmom : 07-06-2007 at 10:04 PM.
Reason: stupid thing to ask
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07-06-2007, 10:21 PM
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Junior Member
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Join Date: Mar 2007
Location: North Providence,RI
Posts: 60
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We drive right past the childrens hospital in RI and go to Childrens in Boston, It is about an hout and 15 minutes away but SO SO worth the trip. The resources and available airway Doctors in Boston are truly what have been James salvation in an otherwise very "tricky" airway. As a matter of fact Dr. Nuss just did James last surgery in May. He is wonderful with airway issues and voice problems.. Ellen
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