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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. |

01-29-2009, 02:25 PM
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Junior Member
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Join Date: Aug 2008
Location: Canada
Posts: 80
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Has anyone ever made the decision to change Pediatricians?
Our Ped didn't send Emerson to the ENT until she was ten months and the ENT was shocked when we got there and asked why he hadn't seen us before. We have had a misdiagnosis through him and had to straighten out tests that were to be done at the hospital ourselves because his secretary made some mistakes that could have been very dangerous. His latest is that he showed up and hour and a half late for our appointment and then told my husband it was because he had to go and pay his taxes so that he would be able to go on his vacation the following week.
We have about had it with him but I am worried that now if we switch to a new Ped we will have to start all over because he has been following her for so long. What would you do?
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01-29-2009, 02:39 PM
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Member
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Join Date: Jan 2009
Location: Portland Oregon
Posts: 662
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My opinion is that as parents, there is NO other relationship in our children's team that's more important than our child's pediatrician. They are the ones that are supposed to advocate for our children as we navigate the medical system. If you can't trust them to do their jobs, let along look out for your child's best interest, then it's time for a change. Believe me, I completely understand how scary it is to change. Three months ago we moved our family 2 states away specifically to get Kira closer to Doernbecher's Children's Hospital. The most agonizing part of that decision was leaving our amazing pediatrician. As scared as I was that we were starting completely over, I found that there's many very dedicated pediatricians. It's taken a little bit to establish a good working relationship with all new docs, but it's been so worth it. I would encourage you to go "shopping"....bottom line is you must be able to trust your child's doctor and it sure doesn't sound like you do.
Michelle
kirafaesmom
www.kirafaesmom.com
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01-29-2009, 02:45 PM
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Administrator
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Join Date: May 2002
Location: Phoenix, Arizona
Posts: 7,322
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I went through two pediatricians with Jack before I found one I was comfortable with. I found an excellent pediatrician after asking one of the PICU intensivists who cared for Jack who he would recommend. I don't think most pediatricians are cut out for, or even want to care for medically fragile/medically complex children. I would talk with the specialists who care for Emerson and see who he/she recommends.
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01-29-2009, 04:25 PM
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Junior Member
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Join Date: Jan 2009
Location: Lafayette, LA
Posts: 58
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I agree with the others -- if you can't trust this Pediatrician, then it's time to look for another. As another suggested -- talk to any of his other caregivers about a recommendation for a Pediatrician.
That's what we did before Mikayla left the NICU. We talked to the nurses who all had children as well and they gave us their suggestions on who they liked, even helped us make sure they were listed on our insurance, and went through telling us the ups and downs of those who /were/ on our insurance. Without their advice, we might have been in your shoes.
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Teresa, mom to Mikayla, 26 weeker (9/29/2007), Believed to first have trachomalacia - could not stay off vent for more than 30hrs. Trached 12/17/2007, G-tube (1/17/2008) because unable to swallow with trach. NICU for 4 months. Two subglottal laryngeal cysts removed 8/2008. Decanulation planned for March 2009. COUGHED out trach 11/7/2008!!

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01-29-2009, 05:09 PM
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Senior Member
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Join Date: Mar 2002
Location: Moore, OK
Posts: 6,010
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Definately time for a change! We went thru something like 7 peds before we lucked into Dr B. He is so utterly fantastic. Very attuned to Allison's needs and also trusts us completely in what we observe and report to him. We trust him 100%. Interview several before you make the switch to make sure they are comfortable with special needs. 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]
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01-29-2009, 05:16 PM
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Member
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Join Date: Jan 2009
Location: Portland Oregon
Posts: 662
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That's how we chose our pediatrician from 400 miles away prior to moving; I called the PICU and talked to the charge nurse. When I outlined Kira's medical needs and my concerns about moving to a new area, she spoke with the attending and called me back. On his recommendation we started with the pediatrician he suggested and have been absolutely thrilled.
Michelle
kirafaesmom
www.kirafae.com
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01-29-2009, 05:47 PM
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Senior Member
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Join Date: Jan 2007
Location: Colorado
Posts: 3,982
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I agree... if you aren't 100% comfortable, then have copies of the file sent to the new Dr. Yes, it is "starting over" - which can be a pain, however, it's a good investment. 
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Dawn

former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 - 
Follow decan at: http://sleepy-dogs.blogspot.com/
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01-29-2009, 06:22 PM
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Senior Member
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Join Date: Jan 2009
Location: X
Posts: 2,710
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I'm on board with the other ladies. I think it would be beneficial for you to change pediatricians if you feel the level care is less than satisfactory. It may take some time to acclimate the new doc with all your child's medical needs but it's possible and it may actually work out better.
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01-29-2009, 08:07 PM
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Senior Member
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Join Date: Feb 2007
Location: Seattle WA
Posts: 6,523
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I too would switch. That kind of comment and lack of consideration is a huge red flag. Starting over may be a blessing. 1 1/2 hours late to take care of personal business so he can go on a vacation?! Ugh! Vacation, jerk, what's that?! Plus mistakes. Sounds like there is little to lose. Good luck. I hope you find someone a whole lot better.
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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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01-29-2009, 08:09 PM
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Member
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Join Date: Jan 2009
Location: indiana
Posts: 721
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You would be better off to switch. We got fed up with our first ped because his office staff were idiots. It took 2 months for them to send the paperwork to get ei therapy started, it was like pulling teeth to get them to call in our prescription refillls, and they were just flat out rude. If you have nursing care, ask the nurses where some of their other patients go. We found an amazing dr that way. She's not a ped, but great anyway.
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 Jen, proud mommy of Eric. ASD, VSD'S, coarc (all repaired) g-tube removed 2/10, DECANNED 4/7/10!!!!!!!!!!!!!! and baby sister Rose (mild asd but otherwise healthy thank God!!!!!!!
Nothing and no one can beat you unless you let them, and then you will deserve it.
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