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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
08-15-2005, 01:21 PM
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Hello everyone.
My name is Linda and my sons name is Andrew we are new here.Born at 27 weeks gestation, at 1 lb 9 oz 12.5 inches long and doing GREAT! Besides his airway.My son is 19 months old and was d/c from early intervention physical therapy in June and is all caught up and age appropriate YIPPY!!!! He gets speech 3 days a week plus has a teacher for speech 2x week and will also have an additional teacher from the deaf school working strictly on sign for communication his sign language has really blossomed and he is doing great with that.He is so occluded at the first ring 95%.He is a patient at Childrens Hospital in Cin,Ohio Dr.Cotton is his doctor and we will be ther Aug-20 for tests sleep study,bronch,chest x-ray.Anyway my question is how do you afford all the bills we havent even had the reconstruction(LTP) if anyone knows anything please pass it along to me any info will help, we are from LONG ISLAND NEW YORK. ALSO if you would like to see my miracle baby please go to. WWW.BABIESONLINE.COM go under baby pages type in Rocco for the last name and he is the first one listed Andrew you can read his journal (life story) and feel free to sign his guest book too. Sorry so long Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â*Sincerly Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â*Linda Rocco 
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#2
08-15-2005, 03:59 PM
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Welcome to the board. You will find that this is a great place for information or advice or to just vent!
We have Indiana Medicaid so that pays for everything and we do not have much of a expense. We are very close if not over the 2 million dollar mark with Raegan and all of her medical past and present. Do you have that that you can get on as well? I hope so!! Good luck in Cin. this month. We will start going there in october. Hope all goes well and keep up posted. Jen
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Mom to Raegan age 4..former 26 weeker. 1lb 10 oz. Trach, Mickey Button, Vestocostomy..26 surgeries to date. Single stage LTP done April 24,2006. And Thanks to Dr. Cotton we are TRACH FREE!!!!!!!!  Also mom to Alexis, age 10 and Corbin, age 6
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#3
08-15-2005, 09:38 PM
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Welcome! You will find a lot of support here.
__________________
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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#4
08-15-2005, 09:52 PM
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Hi Linda and welcome!
Do you have a social worker that helped you set up EIP? Mine is helping me apply for different programs. It's all very complicated. Do you have any other parents you can network with on Long Island? The veteran parents usually know the ins and outs of special financial help programs for medically needy. Good luck, 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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#5
08-15-2005, 10:39 PM
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Hi Linda,
I am glad to see you posting. I love your babiesonline page. Welcome and happy posting  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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#6
08-16-2005, 07:20 AM
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Linda,
Welcome. As far as your concern about paying the bills...does Andrew have Medicaid? Is he eligible for Medicaid Waiver (which will get him a Medicaid card)? I would call the Cincin ENT office back and ask to speak to either one of their financial people or the social worker. They have people come from all over to see Dr. Cotton and crew...they should know the ins and outs of this by now. I'm in Cinci, so if you need anything, let me know. Good luck. You'll be here in just a few days! 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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#7
08-16-2005, 10:14 AM
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hcs_mom said what I would have said. The hospital I am at, Childrens in Chicago, has staff that manages that for us. The social worker and the case worker sent me the paperwork to fill out for the Medicaid waiver program and the case worker is following it for me. It takes a while to go through here in Chicago. We applied over a month ago and still have no response. However, they did tell us we are not approved while they are reviewing the application because of our income. (I am bitter about that because our income does not cover the bills) In some case they will retro the payments for past bills - again you have to be applicable.
Good luck.
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Mother of Johnny a beautiful Full term baby/Diaphragmatic Hernia CDH/ meconiun aspiration/ Severe pulmunary hypertension / NJ Tube till 7 months/ vented since March 29 at birth, trach since June 24/ Tracheolmalacia / Nissen w/g-tube October 21 www.carepages.com --carepage name:johnrmurphy
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#8
08-16-2005, 11:27 AM
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Welcome - I am also mom to a former 27 weeker, Evan. His info is below at the end of the post. We are also on the Medicaid waiver - apply ASAP because there is a waiting list, at least there was in Ohio.
Before this, our health insurance covered Evan. We had him on both our policies, and mine was a particularly good policy with no lifetime cap (thank goodness). Also, we get considerable support from the State Early Intervention program for a variety of non-medical items, like therapies. I would look into the local developmental disabilities board in your area.
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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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#9
08-16-2005, 06:29 PM
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Last edited by T-bone : 03-25-2011 at 04:22 AM.
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#10
08-25-2005, 01:00 PM
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hi linda,
what part of long island are you from. My son was born at 27 weeks weighing 1lb 7oz. we live in amityville ny. He will be 4 years old in october. we were eligible for medicade and that takes care of all his medical expenses. because he was so sick when he was born, he is not able to come home and currently resides in a rehab hospital in mahatten. hopefully he will be able to come home by next year.
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