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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  
Old 04-12-2004, 04:30 PM
Shari Shari is offline
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Jessica-
We waited 2 1/2 years! Just got it. I agree, too long.
-Shari
btw - we are in Arkansas
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Miracles Do Happen!!!

Jacob's mom, 3 yr old with DiGeorge/VeloCardioFacial Synd., TOF with APV, trached 9-11-01, G-button, LTV 950 for 2 1/2 years. Decannulated April 12, 2004!!!
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Old 04-12-2004, 05:40 PM
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sandra sandra is offline
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We are Tx waitning list. I have hears 5-8 years as well.
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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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Old 04-12-2004, 05:45 PM
hcs_mom hcs_mom is offline
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I am in Ohio and our wait was just as long as it took to get the paperwork approved. From what one of our nurses said--Medicaid Waiver (not sure if it applies to just Ohio or what) got much stricter with their allottment of private duty nursing hours so that more people would have access to the benefit.

A while back, someone (I think it was Whitney) was having a hard time with the insurance and was told the wait for waiver was several years. Somehow they got put on a priority list. Maybe check with her and see how she managed to get their case considered more quickly.

I hope you get some help soon.

Jennie
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Mommy to Hannah 8/2/03: fmr 25-weeker, trached 11/03 for subglottic stenosis, LTP 4/05, CTR 4/06, LTP 1/07. Decannulated 1/19/2007!! Gearing up for reconstruction #4; Also Mom to Brianna, 2/22/98: fmr 24-weeker, a little dramaqueen. My amazing gifts.
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Old 04-12-2004, 08:28 PM
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Whitney Whitney is offline
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Hi

The Colorado Medicaid Waiver waitlist is 5 years and growing. Alex's application was expedited to the top of the list (or at least it will be according to the coordinators I have spoken with thus far). I just finished his application and sent it off. They told me I should get an answer within 4-5 weeks. So, check and see if they have an expedition option if you have extenuating circumstances warranting one (LIKE ANYONE ON THIS BOARD WOULD NOT HAVE CIRCUMSTANCES WARRANTING EXPEDITION)!!! They agreed to expedite his application back in October when he was at his worst. Honestly, I don't want to do what I would have to do to qualify for Medicaid otherwise, but I would. I would quit my job and Steve and I would "separate" and I would sell my car, etc. Best of luck to you and I hope you can qualify for an expedition request. Be persistent.

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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  #5  
Old 04-12-2004, 09:24 PM
Esties mom Esties mom is offline
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In Arkansas someone filed a lawsuit on the waiting list and I gues won. They recently opened it up to 940 kids. Surprising enough they have not filled that 940 yet they are still processing applications. Esties mom
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Old 04-12-2004, 09:25 PM
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annerae63 annerae63 is offline
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Here in Ohio I applied for the waiver in Jan. 2001 and Evan was approved in the fall of 2002-6 months before he was decannulated.
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Anne, mom to Evan, born 1/18/01, preemie, TEF/EA repaired, subglottic stenosis, laryngeal web, trach at 6 wks, LTP 8/02, decannulated 5/17/03 , Mic-Key button removed 7/2/04.

http://www.tracheostomy.com/trachkids/kids11/evan

http://anne-evan.blogspot.com
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Old 04-12-2004, 10:26 PM
Laurie Laurie is offline
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We are in Ohio too, and applied in Nov. 2002 and got evaluated in May 2003, services started in July 2003. Things moved faster than we expected.
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Laurie - Mom to Evan (the E-man), 27 week preemie, born 2-23-02, trached at 3 months for severe BPD. Vent dependent until 10 months, G-tube placed at 17 months, oxygen dependent until 2 years, 3 months, decannulated 6-27-04 at 2 years 4 months. The most enthusiastic, positive person I've met.
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Old 04-14-2004, 12:56 PM
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Jimmysmom Jimmysmom is offline
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Hi

You should move to Virginia. We had our home visit just last month and I asked if there was a waiting list here for the Tech Waiver and she said not yet. She said that there were about 250 kids in VA on the tech waiver.

Take care

Anne, mom to Jimmy (4 1/2) Infantile Axonal Neuropathy, trach, vent dependent, g-tube and spinal fusion with growth rods.
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Anne, mom to Jimmy (9) Infantile Axonal Poly Neuropathy, trach, vent dependent, g-tube, scoliosis and spinal fusion with growth rods
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