Pediatric Tracheostomy Home Care Guide at Amazon.com


Go Back   Aaron's Tracheostomy Message Board > Pediatric Tracheostomies

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.

Reply
 
Thread Tools Display Modes
  #1  
Old 11-13-2008, 02:57 PM
babybear's Avatar
babybear babybear is offline
Member
 
Join Date: Sep 2008
Location: KY
Posts: 699
Default how much nursing assistance do you receive?

Gabriel goes to a specialized daycare during the day, but we don't have nurses come to our home. We do get 50 hours of respite care every 6 months, but no overnight help. We really don't need anything at night since Gabriel isn't vent-dependent and sleeps through the night, so the 50 hours is a real bonus. I was just wondering how things varied from place to place.
__________________
Gabriel: born 12-07
PRS
G-tube and Nissen 1-28-08
Trach 6-06-08
Palate repaired 2-03-09

www.caringbridge.org/visit/gabrielsmith
Reply With Quote
  #2  
Old 11-13-2008, 04:36 PM
Baby1107's Avatar
Baby1107 Baby1107 is offline
Member
 
Join Date: May 2008
Location: Southern California
Posts: 762
Default

I would love to have some specialized daycare in our area. Austin is a year old (had had the Trach since 3 months). Next Monday is our FIRST ever nursing shift. This will be daytime nursing assistance for 40hr/wk.
__________________
Janis - Mommy to one Little Prince

Blogging it all at Sneak Peek At Me!
Reply With Quote
  #3  
Old 11-13-2008, 05:35 PM
drct1245's Avatar
drct1245 drct1245 is offline
Senior Member
 
Join Date: Jan 2007
Location: Colorado
Posts: 4,004
Default

Even though we are decanned, we still qualify for at least 10hrs a day (they give us the hrs in a lot, so it's not limited hrs per day). For us, Medicaid's rule is that if a child has ever had a trach and cannot keep sats above 92% on room air, then that child qualifies for PDN. Our nursing agency was going to pull all our PDN hrs until I informed THEM about the law. (ggggrrrrr.... don't get me started) So we have some hrs for the next 6 months - just enough to get us through the yucky season!!

Search on nursing in the archieves, I know it's been discussed before.
__________________
Dawn



former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 -
Follow decan at: http://sleepy-dogs.blogspot.com/
Reply With Quote
  #4  
Old 11-13-2008, 06:06 PM
Mom2TwinsPlus1's Avatar
Mom2TwinsPlus1 Mom2TwinsPlus1 is offline
Senior Member
 
Join Date: Apr 2005
Location: Home of the OU Sooners!
Posts: 4,112
Default

We are entitled to 12 hours a day 7 days a week. We don't use any, anymore. Too many problems and a total waste of time in my opinion since Emma is stable, and I know those nurses are problably needed elsewhere
__________________
LORI--MOM TO ELLA AND EMMA(born 10-16-04)AND DEREK (born 9-13-01)

EMMA- CP,TRACHED, G-TUBED DEC 2004 AND VENT DEPEND JUNE '05, CORD ACCIDENT DUE TO MONOCHORIONIC MONOAMNIOTIC TWIN PREGNANCY
Reply With Quote
  #5  
Old 11-13-2008, 06:20 PM
KJKK8437's Avatar
KJKK8437 KJKK8437 is offline
Senior Member
 
Join Date: Apr 2008
Location: Virginia
Posts: 2,664
Default

Our old insurance company grudgingly agreed to pay for 8 hours a day after Alex's palate surgery. They agreed to more earlier, but it was always a fight.

In Virginia, trach kids qualify for a "tech waiver" that entitles them to 24 hour nursing coverage. We were not eligible because our insurance policy was written to cover "all medically necessary nursing". Medicaid interpreted this as a gapless policy and would not assist us even if the insurance company turned us down.

HOWEVER, we applied for and qualified for respite care, which got us the Medicaid card. Then we applied for another medicaid program designed to provide nursing care for Elderly and Disabled folks based on a scale of medically necessity. We scaled Alex and fell off the top of the chart and were immediately accepted. (In fact, the folks that ran the program wanted to know why we weren't on the tech waiver because they never had a child score so high on the need list.) The "need" is based largely on the amount of technology required, such as Gtube, complex meds and trach tubes.

Having said all that ... we are like Lori. I don't know if I am difficult, or if our nursing is just fairly poor, but we couldn't find a full time nurse we could work with. We had two, but we lost one when the insurance fought us, and by the time we got coverage again, he had gone to work with a friend. The other got promoted to management. Everyone else only wanted to work 1-2 days a week, and it was harder on us to have 7 or 8 nurses over the week then it was to find another solution.

Our "solution" was to hire a personal attendant to help us with Alex, and we used Medicaid dollars to reimburse part of her salary.

Oh -- for ARC members, the elderly and disabled respite care program was not a waitlist program. It is not the same as program designed for the mentally disabled -- for which there is a substantial waitlist. It is purely a respite program. For us to keep the medicaid card, I MUST accept respite hours on a monthly basis. Weird, eh?
__________________
Karin
Alex's Mom
Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/

Reply With Quote
  #6  
Old 11-13-2008, 06:26 PM
Mom2TwinsPlus1's Avatar
Mom2TwinsPlus1 Mom2TwinsPlus1 is offline
Senior Member
 
Join Date: Apr 2005
Location: Home of the OU Sooners!
Posts: 4,112
Default

I should add we only qualify through medicaid (our only insurance right now) for he 12 hours 7 days a week due to Emma's vent. Without it we do not qualify for any nursing
__________________
LORI--MOM TO ELLA AND EMMA(born 10-16-04)AND DEREK (born 9-13-01)

EMMA- CP,TRACHED, G-TUBED DEC 2004 AND VENT DEPEND JUNE '05, CORD ACCIDENT DUE TO MONOCHORIONIC MONOAMNIOTIC TWIN PREGNANCY
Reply With Quote
  #7  
Old 11-13-2008, 11:48 PM
Hope's Avatar
Hope Hope is offline
Senior Member
 
Join Date: Jul 2007
Location: Monroe, GA
Posts: 1,434
Default

Shelby had 56 hours/week, but we eventually settled on one nurse doing 40 hours M-F (daytime), and no nurse over the weekends. Weekend nurses seemed even more unstable than weekday ones! We were warned by nurses and the agency that we'd lose nursing altogether if we didn't use all our hours, but it never happened. I don't know if they honestly thought that or if it was just a threat for them to get all the hours/money they could.

Hope
__________________
custodial g-ma to Shelby ~~ premie born 9/28/05 with choanal atresia, trached 12/28/05 -- sub-glottic stenosis due to repeated intubations, decanned 3/10/08

http://s307.photobucket.com/albums/n...t=4acb482c.pbw
Reply With Quote
  #8  
Old 11-14-2008, 12:04 AM
Ainsley's Mom's Avatar
Ainsley's Mom Ainsley's Mom is offline
Senior Member
 
Join Date: Feb 2007
Location: Seattle WA
Posts: 6,627
Default

I think it varies greatly depending on a person's private insurance or whether they are on Medicaid.

Initially we had to fight fight fight with insurance to get coverage. They would provide night nursing for 10 hours a night and then 8 hours a night. We got a handful of day shifts but only post surgery as a way to get her out of the hospital so they didn't have to pay hospitalization. They did a benefit exchange and took it out of our major medical because home nursing isn't covered under the policy. We had to appeal make threats it was terribly stressful. We had started transitioning away from having night nurses after 10 months and they stopped covering it completely at 1 year but by that time we were ready to give it up. By that time she needed little suctioning during the night.

But she required a LOT of suctioning during the day, like 50 times a day. And she has had a lot of issues. Tube fed. Had reflux/vomiting. Required a lot of therapy. Had two cranial surgeries. G-tube surgery. Hip surgery and was in a cast for 3 months and brace for even longer. It's hard to believe they thought I could do it without help. It's hard for me to believe I made it through that first year without any help during the day. I also had a (then) 5 and 3 year old. I'm amazed I didn't go postal.

So earlier this year I applied for the Medicaid waiver in our state (had been previously told I had to exhaust our policy first) and actually got approved because insurance denied us! Wow! They approved us for 10 hours a day of nursing care + respite. We do 2 10 hour shifts. It has been a great help. I finally feel I can lead a somewhat normal life now. I drive the carpool those days, pick up my kids from school. Take them to ballet class. Go grocery shopping. Go to doctors appointments. It's not without it's headaches. I really wish we didn't need a nurse but unfortunately we do.

A nursing case manager once told me that nursing is like a drug addiction. Once you get started it'll make you miserable but you don't know how you'll manage without it and it's really hard to give it up, even when you want to.

Perhaps more than you wanted to know.
__________________
SUSAN - Mom to Ainsley (age 7 - DOB 10/18/06) + Evie (age 13) and Adrian (age 11). Adorable and Trached since 11/06 (scarred vocal cords & OSA) capping with mixed success since 1/09, sagittal craniosynostosis (reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, rare form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery). Decanned 7/21/14.

Blog Link:
http://ainsleyrae.blogspot.com/
Reply With Quote
  #9  
Old 11-14-2008, 04:05 AM
cbissell's Avatar
cbissell cbissell is offline
Administrator
 
Join Date: Feb 2002
Location: Grafton, MA
Posts: 2,063
Default

FAQ
__________________
Cindy - Mom to Aaron (age 20), trached for 4 years, subglottic stenosis, ADHD, learning disability, former 26 week preemie and identical twin to Eric (age 20), spastic quad CP, moderate MR, seizure disorder; Anthony (age 21), spastic quad CP, g-tube, seizure disorder, cortical vision impairment, profound MR; and Natasha (age 7) CP, cortical blindness, seizure disorder, profound MR, shunt, g-tube.



Home Page: http://www.bissells.com
Reply With Quote
  #10  
Old 11-14-2008, 05:36 AM
cariaad's Avatar
cariaad cariaad is offline
Senior Member
 
Join Date: Mar 2002
Location: Moore, OK
Posts: 6,010
Default

A it'lnursing case manager once told me that nursing is like a drug addiction. Once you get started l make you miserable but you don't know how you'll manage without it and it's really hard to give it up, even when you want to.
Susan that is a great analogy. Makes me glad i never got "hooked"! Deb
__________________
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
[IMG]
[IMG]
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off


All times are GMT -5. The time now is 01:30 PM.


Disclaimer: The information and resources on Aaron's Tracheostomy Page, Aaron's Tracheostomy Message Boards and the Trachties Listserv are for educational purposes only. This web site and its resources are not engaged in rendering medical, pharmaceutical nor therapeutic advice or professional services. The information provided through these pages, message boards and listserv or any links from this web site should not be used as a substitute for professional advice by qualified doctors and/or therapists.

Powered by vBulletin® Version 3.6.8
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.