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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. |

10-20-2005, 11:01 AM
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Join Date: Oct 2005
Location: Pa
Posts: 402
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Okay, we have used the same ped for years, she is great for our "healthy " kids and I like the fact that she has a single person practice. I am assuming that when Matt is discharged from our local hospital he will have a ped but that one will be far away ( at least an hour) so my question is do you have one closer to home for normal things? like vaccinations , colds, funky rashes( we seem to get those here) ect? I would assume that my ped would work with the new ped,kind of like a collaborative effort, does this happen or am I going to be running an hour each way every time Matt gets the sniffles?? I am just trying to figure out the best way to handle this. If Matt is transfered to CHOP we will have to navigate the city traffic, I don't care about that but its a long ride and trying to time it with nursing care to go with me and then shift changes could get tricky. What do all of you do about things like this??
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mom to Kyle 16, Marlyn 15, Zack 13, Brandon 11, Meghan 10, Sarah 2, and now Â*Matthew 15 mos, ,trached
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10-20-2005, 12:04 PM
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Mentor
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Join Date: Dec 2003
Location: Denver, CO
Posts: 5,387
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Alex and Aidan are my only children. Hence, when we picked our Ped. we chose one that was experienced with preemies, trachs, and overall extremely competent and well-spoken. She has always gone to bat for the kids with other doctors and insurance companies. She's excellent. It has been a collaborative effort between her and our other specialists including the pulmonologist, ENT, and GI doc. We mediate between the doctors and our ped. will contact the other docs as needed or vice versa. Its certainly a team effort between all your doctors....
Good luck
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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10-20-2005, 12:10 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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You should be able to use your current pedi for vaccines, etc. We use the same pedi we have used for 12 years with my older kids.
Now when Brian gets sick, I call his pulmonologist. I do not go through the pedi, because Brian's lungs are so compromised that the pulmo. makes all desicions about him when he is sick. So for sickness, you might be dealing with a specialist and not a pedi at all.
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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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10-20-2005, 12:56 PM
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Join Date: Jan 2005
Location: Kentucky
Posts: 161
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All of HOlly's specialist are 4 1/2 hours away as well as the Childrens Hospital so we have a local Ped. who can give her shots and meds and to sign orders for her to be flown to the Childrens Hospital. I would think it would be easier with someone close for small problems, but the issue we had when finding a local Ped. was: no one was taking new patients, and the ones that were didn't take Ky medicaid. It took us 2 months to find one who would take my daughter's case. Good Luck.
Misty
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Miracles still happen!
Holly Grace 5-18-2001, Escobar Syndrome(webbing, muscle contracted, scolosis, club feet, short stature, off set ears(hearing loss), tethercord, fused joints) Diaphramtic herni/enventration, has only left lung, trach, g-tube, 8 surgeries and counting.
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10-20-2005, 03:39 PM
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My son has a local pediatrician for routine things and we always go to the pulmonologist for any acute or chronic illnesses. (since they are usually airway issues.) Our Pediatrician felt uncomfortable with the medical fragility of our son that each of the first five visits for acute cough, fever, etc. resulted in hospital admission and work-up to rule out RSV. The Internist at the hospital would see symptoms magnified on paper and totally contradicting what he was seeing with our son physically present. Gratefully, our Pulmonologist, was just a call away and would always see our son the same morning or afternoon that we called him. Hopefully, your Pediatrician will not feel overwhelmed. We chose this particular pediatrician only because we had a problem finding a Pediatrician who would see a 5 month old just recently released from the hospital with medical issues. When we called local pediatricians the response was usually, "Yes, the doctor does take care of infants with medical problems but he will only see them if he was involved in their care from the onset. Hard to do when you were hospitalized 3 hours away from where you reside. Hope your experience is better than the one we had.
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10-20-2005, 05:21 PM
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Senior Member
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Join Date: Jun 2005
Posts: 2,879
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We have had the same ped. for 20 yrs. If your other children are established with one and you feel a certain amount of confidence in this individual, I would say stick with him/her. I'm sure you will have many specialists to deal with, but this person might serve as your "gatekeeper" to round out your new little man's care. Our ped. really helps with that, especially when we conflicting info. from the different specialists! He puts it into perspective and helps us decide what is the most pertinent at the time. I hope this helps!
Dawna
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Dawna, Mom to Tristan 6 yrs, former 22wk preemie with trach (decanned 6/20/07!!), Josh 25, Jenna 21, Gracie 14, and Jon 11.
Photography website: http://pricelessmemoriesphoto.com/
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10-20-2005, 06:06 PM
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we have a ped. and other specialist such as neuro, and pulm. the ped. will only do the vaccines and look her over really good to make sure that she has no infections and things like that.
all of our doctors are in memphis and we are about 1 hour outside memphis so whatever the case may be we are still driving to get to her doctors.....
denise
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10-20-2005, 07:17 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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We fired 5 peds before we found our gem. A lot of local peds wouldnt even see Alli because they had "no expertise" with preemies, trachs, etc. I apprecitaed their honesty. Our ped has tons of experience with special needs kids and he has actually taken the place of our pulm and GI specialists. He is also great about hospital stays (keeping them brief as we can) and will also talk to me over the phone rather than make us come in if it is a minor issue. What we did was make "get acquainted" appointments with each new dr as they came along, to see whattheir/our comfort level was with each other. Some drs just dont "get" our kids. Good luck! 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
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10-20-2005, 10:37 PM
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Member
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Join Date: Jul 2002
Location: South Carolina
Posts: 607
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I would think that there are enough specialists managing Matt, that you should be able to choose the pediatrician that's most convenient and best for Matt's needs. Our pediatrician is both. She has a lot of experience with special needs kids and kids with extra tubes. I prefer her to be in charge of admittance to the hospital because she's much more parent friendly and also works to get us out as quickly as possible. In addition, Joel's specialists seemed to use hospitalizations as the chance to run tests or do other procedures. I personally didn't like this because I felt like that time should be used for rest and a chance to heal.
I'm sure you've gotten great advice from all the wonderful parents hear. Hopefully, you'll find just the right pediatrician!
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Lisa- mom of John Patrick age 9 and formerly trached Joel age 4- DECANNULATED JANUARY 25, 2004!!!
Foster mom to Sierra born July 16, 2005- CHARGE syndrome, grade IV kidney reflux, severe hearing loss, trach & gtube for laryngeal cleft and chronic aspiration, gorgeous blue eyes
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10-21-2005, 07:28 AM
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Senior Member
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Join Date: Dec 2004
Location: England
Posts: 10,932
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We are lucky that our local hospital is only is less than 10 mins drive away. Sam's ped there is the best, we can walk it at any time of day or night to the children's ward and if he is on duty he will come around. However, he is not experienced with the trach, so if the problem is trach related he will arrange transfer to childrens which is about 1 and a half hours away. I am sure your regular ped will be fine for the everyday things like shots and minor ailments, but you will probably have lots of other specialists for the more complex issues.
Best of luck
Julie
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Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14).
I am first and foremost a child
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