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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
08-14-2004, 09:43 PM
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I hope all is well with EVERYONE...I keep you all in my prayers daily.
We just moved from NJ/NY border to the Jersey Shore. My twins are coming home from rehab soon (after 24 months!) and I need names of trusted doctors in this area. We will need an Pulm, Ped and ENT. Who better to ask?! BTW- both boys are finally off the vent as of last week, it seems so surreal right now. They are on a misted collar and will probably have their trachs until next Spring (if all goes well). Thanks in advance if anyone can help. ~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
08-14-2004, 11:56 PM
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Kerry,
Hi, we live in central jersey. Where exactly are you? Or should I say, which exit on the parkway are you, lol! I don't know how far south you are, but if you are not too far, I have a wonderful group of doctors to recommend to you. All are affiliated with the Bristol Meyers Squibb Children's Hopsital in New Brunswick. Let me know!
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Sharon...mom to Hannah, my beautiful little §≈earth-angel≈§. CP, moebius syndrome (a rare disease affecting the cranial facial nerves and characterized by facial paralysis)...Reactive Airway, GERD, trach, g-tube, and lots and lots of suctioning! Recent Baclofen pump for spasticity and scoliosis surgery, Jan 2008, curve corrected from 80 degrees to 25 degrees and doing great!!!!
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#3
08-15-2004, 07:01 AM
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We go to CHOP. Childrens Hospital of Philadelphia. I dont' know how far you are willing to drive, but we love our ENT (the only specialist we need). CHOP is rated as one of the best children's hospitals in the country.
Godspeed Clare
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Mother to 3 Â*Rebekah 12. Patricia 9 and Jacob 7.Â*Patricia--diagnosed at age 4 with VCP/Subglottic Stenosis. Â*Has had T/A, LTP(8/10/01),Trach(2/25/02), 2 trach revisions arytnoid work,vocal chord lateralization(8/10/04) and countless broncs in the last 4 years. Decannulated!! 9/30/05 Â*Patient at CHOP
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#4
08-15-2004, 08:57 AM
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Where on the shore?? We live in Monmouth county. We also go to CHOP for major care but I have a group of local doctors that I love for routine follow-ups. Please feel free to contact me I would love to share my info. with you.
Carrie carrie_foley@yahoo.com
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 Our little miracle, Nicholas Scott born 08/09/02; CHARGE Syndrome, bilateral cleft lip/palate, congenital heart disease, trach and g-tube, hearing aids. Decanulated!
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#5
08-15-2004, 11:46 AM
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I am so glad I have some neighbors who can relate to my situation!
We are in Monmouth County, a mile from Jersey Shore UMC. I don't know the area very well. I am not sure how far Philly is.
__________________
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
08-15-2004, 11:50 AM
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Sharon- Has Hannah been an inpatient at Children's Specialized Hospital? She seems familiar to me. (and very cute)
~Kerry
__________________
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
08-15-2004, 06:36 PM
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Hi Kerry
A while back, Hannah received Speech therapy at Children's Specialized Hospital in Mountainside, NJ. as an outpatient. She was never hospitalized there, though. In October we will be seing a peds neurologist (Dr.Traeger) who moved from our hospital (Robert Wood Johnson or Bristol Meyers Squibb now) to Children's. What is your experience with the hospital?
__________________
Sharon...mom to Hannah, my beautiful little §≈earth-angel≈§. CP, moebius syndrome (a rare disease affecting the cranial facial nerves and characterized by facial paralysis)...Reactive Airway, GERD, trach, g-tube, and lots and lots of suctioning! Recent Baclofen pump for spasticity and scoliosis surgery, Jan 2008, curve corrected from 80 degrees to 25 degrees and doing great!!!!
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#8
08-15-2004, 08:02 PM
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Sharon- Dr. Traeger treated my son after his cardiac arrest in December. She was really nice and very thorough, had us sit in her office and made sure we understood what to expect neurologically (after his seizure) . I liked her a lot and I know other parents like her too.
We love Children's, and that is based upon our 16 months there. Most kids spend 3 months- tops- there in short-term care. When you spend so much time in a hospital, you usually have more than enough bad stories, I have none. We wouldn't be where we are today if it wasn't for our LOVE and Children's good medical care. ~Kerry
__________________
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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#9
08-16-2004, 07:02 AM
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FYI. Depending on Traffic, I know that it takes us about 1 1/2 to 2 hours to get from Philly to Ocean City NJ. We vacation there every summer. (OCNJ). I drive about 5 hours one way to have my daughter seen at CHOP.
__________________
Mother to 3 Â*Rebekah 12. Patricia 9 and Jacob 7.Â*Patricia--diagnosed at age 4 with VCP/Subglottic Stenosis. Â*Has had T/A, LTP(8/10/01),Trach(2/25/02), 2 trach revisions arytnoid work,vocal chord lateralization(8/10/04) and countless broncs in the last 4 years. Decannulated!! 9/30/05 Â*Patient at CHOP
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#10
08-16-2004, 10:56 AM
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Triciasmom- Do you use CHOP for the broncs or your local hospital?
I am trying to imagine driving for 4 hours with two trached O2- dependant children. What is the trip like with just one child for 5 hours each way? Do you take a nurse along? My heart is pounding just thinking about it.
__________________
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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