View Full Version : New Member and very glad to have found this sight!
01-30-2008, 02:00 AM
Hello everybody. I am so glad I found this board. My daughter Molly is 9 months old and was born with Spina Bifida. We got her diagnosis about 2 weeks before she was born. I was actually in the hospital at the time and I kept thinking that someone would come talk to me and tell me what to expect or at least give me info to read but all I was told was I should try to get on the internet and get some info. Things have been crazy ever since.
Molly did well at first but then at about 2 1/2 months she started having very severe stridor. She ended up hospitalized and intubated 3 times before we got any answers. We live in Lubbock TX and Molly was at the University Hospital which is a teaching hospital for Texas Tech Medical School (I am also a social worker there) and I thought we were in good hands but I finally insisted Molly be transfered to Children's in Dallas after her 3rd intubation.
It was finally determined that Molly has bilateral vocal chord paralysis and a tracheostomy was performed. That was in November and I am still trying to get used to it. We have also had to start cathing Molly every 3 hours recently. Resources and support are very limited here. I also have 3 older children and sometime I feel they don't get enough of my time.
I'm really interested in the nursing care that I have read about people having. We had home health right after we got home from Dallas but they only came out twice and stayed about an hour. They just wanted to make sure I could do a trach change. I have checked on assistance programs through the state and we either don't qualify financially or the waiting list is at least 3 years! Any tips on how I can get help? I'm so glad to find this board and know I'm not alone.
01-30-2008, 06:10 AM
I sent you an email through this site - not sure if you will be able to tell that I did so I wanted to let you know! :) Welcome to the Boards - If there is help to be found, you will find it here!
01-30-2008, 09:06 AM
Welcome, sorry you have to be here but these are good people to know. It sounds like Molly has a good advocate in her mom already. Karen
01-30-2008, 12:32 PM
You've come to the right place for answers. My daughter was trached in September and the folks on this site have been wonderful.
We are fortunate to have home nursing paid for by my insurance company (but it eats away at her lifetime max). We are on the wait list of the state assisted home health care.
01-30-2008, 12:42 PM
I can't offer you advice on nursing care as we live in the uk and things are very different here. there are plenty of people here who can help though. Welcome to the boards - glad you found us.
welcome and great you found this place - it is a mine of great info!
01-30-2008, 07:36 PM
Welcome!!! This website has been a god sent for me. I finally feel I belong and someone can relate to me and what I am going through. I am sorry you couldn't have found this site beforehand. I was really looking for a mom to talk to before my son recieved his trach. I hope you find some resources to help you with nursing help!
01-30-2008, 07:41 PM
Hi. Welcome. My son also has BVCP. There are several kids on the board with it. Good luck finding nursing coverage. Most here have it through private insurance or state administered programs. You might post a question directly for those from Texas to get some specific ideas.
01-30-2008, 08:17 PM
Hi there and welcome!
01-31-2008, 01:28 AM
Hi and welcome to the group :hug:
01-31-2008, 03:02 AM
Hi and Welcome! I've been fighting for nursing for my son, Tommy for over a year now and we finally got it! First make sure you are signed up with your state's Early Intervention program. It is for children 0-3 with any kind of disability/prematurity, etc. They are NOT based on income. You will need to get the social worker at the hospital to give you a referral. After you have a caseworker with them (and Early Interventionist), inquire about a Critical Waiver. Also, contact your local Family Voices. They are an advocacy group for children with disabilites. They helped me make lots and lots of noise and finally get my nursing through a loophole.
I DO know in TX that you can have your child, by doctor's orders, spend ONE NIGHT in a nursing home facility (in a private room with YOU there, doing her care, not actually being treated by them). It is not the most pleasant way to go, but I do know of a family in TX that did this to get their Medicaid waiver.
02-02-2008, 05:29 PM
Welcome to the board...
Molly isn't on a vent or oxygen? For some waivers, you can jump to the top of the list if you are vent dependent. The one thing with most waivers, at least in the state of CO, is that once you are on the waiting list, your coverage retros back to the date you got approve on the list. (lot of good that helps in the mean time)
The other group to contact is your local P2P group and Family voices - I refer EVERYONE to them in their state. We (and about 3 other people) had been trying to get a Medicaid # for Ayden for over 2 months and in about 2 -3 days after contacting them, they got us in contact with their contact and we had a number! The sites are: http://www.txp2p.org/ and http://www.familyvoices.org/states.php?state=TX
Does your private insurance cover any PDN? There is also something called respite, which gives you usually about 4 hrs a month of care. That is usually through your county - the same thing that Rene mentioned. Early Intervention falls under the Federal program called Part C. They help provide needed therapies that your insurance may not cover. Usually a social worker contacts the local Part C chapter and they start the process by contacting your local chapter for your county that you reside.
Hopefully this will help you on the road to getting on a waiver.
02-02-2008, 08:43 PM
02-03-2008, 11:29 PM
Glad you found us here. This place is great to help find answers. We are getting our newest from Texas and I am from Dallas, but know nothing more than that. Just keep on aksing and I know people will help.
02-04-2008, 12:19 AM
Thanks to everyone for responding! We have had ECI since Molly was about 6 weeks old but our caseworker has been the least helpful person of all. I will follow up on all the suggestions posted. Molly is now also receiving care at Scottish Rite Hospital in Dallas and we have an awesome social worker there. I feel like I've finally got a good Texas contact. Thanks again to everyone.
Beth Ann -mom to Abbie (9) Davis (6) Claire (2) and Molly (9 mos - Spina Bifida, Charia II, VP Shunt, BVCP, trach)
02-04-2008, 02:42 PM
Hi just wanted to add my welcome :thumb:
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