Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 I don't know what state you live in, but Tyler's parents need to contact the hospital social worker and apply for the Medicaid Waiver. In different states, it has different names, and different policies govern it. In Washington State it is called the Medicaid Waiver, and to apply for it you have to be a client of the Division of Developmental Disabilities. There is a waiting list to get on it, but that being said the sickest kids will get services first (and having a trach qualifies as being " sick enough " ). Depending on how long Tyler has been in the hospital, he may also qualify for a secondary medical coupon (in Washington, it was called the long term care program, and my son had it until his 1st birthday). Also, you need to get Tyler's medical team to explain to the insurance company that the nursing is manditory, and they won't let him out of the hospital until the insurance company agrees to pay for some. See if the insurance company has a case managment program--a nurse will be assigned to Tyler's case and sometimes they can trade benefits so that he can at least get some nursing at first (we were able to get 240 hours to cover the first month our son came home, and he was not trached). I wish Tyler's parents strength to deal with this--the social worker at the hospital would be the best place to start. It's not fair having to deal with a sick child AND with all these hoops, but unfortuantely that's just the way it is. (mom to Evan, 22 months) eberrn eberrn@...> wrote: I am the grandma of 5 week old Tyler. He was born at 36 weeks 4 lb 15 oz on May 1. He has bil coloboma of the optic nerves (don't know what is vision will be), bil. chonanal atresia (4 wk post op and healing well), post tracheoesphageal fisula (repared at 6 days)repair, g-tube, Left side facial/ear abnomalities (hearing not evaluated yet), larynealtracheo malacia (trached at 3 weeks, NOT vented), and as of Saturday had seizures. The family has been reading as much as we can regarding this syndrome in preparation for Tyler's homecoming in a few weeks. We are being told insurance doe not cover home nursing and Tyler will require 24 hr care. We are looking at getting 6-8 hrs of nursing care 5 days a week so that Mom and Dad can get sleep,but are have a difficult time getting referals and the hospitl case mamager says I may be impossible to find someone to take an infant with a Trach. We are waondering if anyone else who has had this experience has any creative ideas on how the family can manage this with out bring in a nurse. --------------------------------- Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Congratulations on your new grandson and welcome to the list. I'm in Canada so not much help with the insurance issues, but I'm sure lots of US families will have ideas on that for you. Please keep us updated on Tyler as you can, Kennedy's Mom (www.chargesyndrome.info) > > I am the grandma of 5 week old Tyler. He was born at 36 weeks 4 lb 15 > oz on May 1. He has bil coloboma of the optic nerves (don't know what > is vision will be), bil. chonanal atresia (4 wk post op and healing > well), post tracheoesphageal fisula (repared at 6 days)repair, g-tube, > Left side facial/ear abnomalities (hearing not evaluated yet), > larynealtracheo malacia (trached at 3 weeks, NOT vented), and as of > Saturday had seizures. > The family has been reading as much as we can regarding this syndrome > in preparation for Tyler's homecoming in a few weeks. We are being > told insurance doe not cover home nursing and Tyler will require 24 hr > care. We are looking at getting 6-8 hrs of nursing care 5 days a week > so that Mom and Dad can get sleep,but are have a difficult time getting > referals and the hospitl case mamager says I may be impossible to find > someone to take an infant with a Trach. > We are waondering if anyone else who has had this experience has any > creative ideas on how the family can manage this with out bring in a > nurse. > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 no experience with this, but welcome to the group. mom of tim 11yrs. ChARGE, keegan 9, liam 6 wife to pat New Grandson with CHARGE I am the grandma of 5 week old Tyler. He was born at 36 weeks 4 lb 15 oz on May 1. He has bil coloboma of the optic nerves (don't know what is vision will be), bil. chonanal atresia (4 wk post op and healing well), post tracheoesphageal fisula (repared at 6 days)repair, g-tube, Left side facial/ear abnomalities (hearing not evaluated yet), larynealtracheo malacia (trached at 3 weeks, NOT vented), and as of Saturday had seizures. The family has been reading as much as we can regarding this syndrome in preparation for Tyler's homecoming in a few weeks. We are being told insurance doe not cover home nursing and Tyler will require 24 hr care. We are looking at getting 6-8 hrs of nursing care 5 days a week so that Mom and Dad can get sleep,but are have a difficult time getting referals and the hospitl case mamager says I may be impossible to find someone to take an infant with a Trach. We are waondering if anyone else who has had this experience has any creative ideas on how the family can manage this with out bring in a nurse. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Congratulations Grandma on the arrival of your blessed Tyler! How wonderful for him and his parents to have such a loving and caring grandmother! Please let me stress the importance of what others have said....FIGHT for nursing. FIGHT, FIGHT, FIGHT. When our insurance initially denied the nursing, our hospital case worker wrote a lengthy letter with all of Max's problems and explained that he simply would not be discharged unless he had nursing lined up. Sure enough, we got nursing and still have some today! You have to fight, fight, fight and please don't let the parents think they can do this on their own. They need sleep to be truly refreshed to take care of Tyler each day and they also need a few moments here and there to get away and absorb all that is happening. With a trach, I thought insurance had to cover nursing because it is truly a compromised airway and poses quite a threat should something happen when parents are sleeping. Please let us know how we can help. Congratulations again and welcome to our CHARGE family! Amy and Max eberrn eberrn@...> wrote: I am the grandma of 5 week old Tyler. He was born at 36 weeks 4 lb 15 oz on May 1. He has bil coloboma of the optic nerves (don't know what is vision will be), bil. chonanal atresia (4 wk post op and healing well), post tracheoesphageal fisula (repared at 6 days)repair, g-tube, Left side facial/ear abnomalities (hearing not evaluated yet), larynealtracheo malacia (trached at 3 weeks, NOT vented), and as of Saturday had seizures. The family has been reading as much as we can regarding this syndrome in preparation for Tyler's homecoming in a few weeks. We are being told insurance doe not cover home nursing and Tyler will require 24 hr care. We are looking at getting 6-8 hrs of nursing care 5 days a week so that Mom and Dad can get sleep,but are have a difficult time getting referals and the hospitl case mamager says I may be impossible to find someone to take an infant with a Trach. We are waondering if anyone else who has had this experience has any creative ideas on how the family can manage this with out bring in a nurse. Amy McKinley Mom to MIGHTY MAX -- cHARGE, 19 months old (17 months corrected) maxupdate.blogspot.com --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Our daughter is home with a trach and g-tube. My wife gets some much needed respite nursing, but we have actually decided to not pursue full time nursing. Our daughter sleeps through the night and we have her on a pulse-ox monitor all night as well. When it alarms or we hear her coughing on the baby monitor, we'll go in for suctioning. We also bought a 2 camera video monitor so we could see her and the monitor from our room without getting up. Most nights when she is not sick she does not need suctioning. However, when our daughter has a cold it makes for some sleepless nights. She did not have the fisula or choanal atresia so I do not know how those would affect her secretions. It's overwhelming at first, but you really do get into a routine. Family that visit are amazed when they see our nighttime routine to get both kids (we have a 3 year old son and our daughter is 11 months old) in bed with all the trach care and feeding tube setup that goes along with the normal baths, books, etc. > > no experience with this, but welcome to the group. > mom of tim 11yrs. ChARGE, keegan 9, liam 6 wife to pat > New Grandson with CHARGE > > > I am the grandma of 5 week old Tyler. He was born at 36 weeks 4 lb 15 > oz on May 1. He has bil coloboma of the optic nerves (don't know what > is vision will be), bil. chonanal atresia (4 wk post op and healing > well), post tracheoesphageal fisula (repared at 6 days)repair, g-tube, > Left side facial/ear abnomalities (hearing not evaluated yet), > larynealtracheo malacia (trached at 3 weeks, NOT vented), and as of > Saturday had seizures. > The family has been reading as much as we can regarding this syndrome > in preparation for Tyler's homecoming in a few weeks. We are being > told insurance doe not cover home nursing and Tyler will require 24 hr > care. We are looking at getting 6-8 hrs of nursing care 5 days a week > so that Mom and Dad can get sleep,but are have a difficult time getting > referals and the hospitl case mamager says I may be impossible to find > someone to take an infant with a Trach. > We are waondering if anyone else who has had this experience has any > creative ideas on how the family can manage this with out bring in a > nurse. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Congratulations on your new grandson! I echo what others have said. You need to push. We live in Massachusetts and took our son home on O2 and a G-J tube and were told by the hospital social worker that our insurance would not cover nursing. The next day I called our insurance company and told them that if we didn't get nursing coverage we would be staying in the NICU (this costs the insurance company $1500 a day). They were more than happy to provide us with 56 hours a week for the first six weeks. Then we applied for a waiver program in Massachusetts called Kaileigh Mulligan (presumably named after a little girl in a similar situation). Again the hospital social worker told me we wouldn't qualify, but I pushed her for 2 weeks to give me the paperwork (turns out it was available on the web anyway) and 2 weeks after applying we were accepted by the program and got the nursing coverage approved for 6 months and have the state health insurance as a secondary policy to our primary private insurance. This is important because once you get home, insurance coverage for supplies and equipment rentals can quickly run out. Then the seondary policy kicks in and covers the gap. One month home and our son was trached. He was automatically bumped up to the maximum of 112 hours a week which almost a year later we still have. We have 7 nights a week of nursing and 4 1/2 days. It took awhile to fill all of the slots and I did several months of night duty. For a child who needs a lot of suctioning (like our son) it was not something that I could have done over the long term. It takes some adjusting having someone in your house all the time, but at the end of the day it has been such a blessing to keep our family life as " normal " as possible. My bottom line message is, like so much else in life, if you want something done right, you have to do it yourself. It is an extra burden during an already stressful period, but it will make a huge difference in the long run. Best of luck and if you happen to be in Massachusetts you can contact me directly for info on how to apply! kzkoehler@... > > I am the grandma of 5 week old Tyler. He was born at 36 weeks 4 lb 15 > oz on May 1. He has bil coloboma of the optic nerves (don't know what > is vision will be), bil. chonanal atresia (4 wk post op and healing > well), post tracheoesphageal fisula (repared at 6 days)repair, g- tube, > Left side facial/ear abnomalities (hearing not evaluated yet), > larynealtracheo malacia (trached at 3 weeks, NOT vented), and as of > Saturday had seizures. > The family has been reading as much as we can regarding this syndrome > in preparation for Tyler's homecoming in a few weeks. We are being > told insurance doe not cover home nursing and Tyler will require 24 hr > care. We are looking at getting 6-8 hrs of nursing care 5 days a week > so that Mom and Dad can get sleep,but are have a difficult time getting > referals and the hospitl case mamager says I may be impossible to find > someone to take an infant with a Trach. > We are waondering if anyone else who has had this experience has any > creative ideas on how the family can manage this with out bring in a > nurse. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Yes, fight for the nursing is right. I did it for years...at one point they denied it and my son became sick and I became very sick trying to care for him, my other child, my husband and a full time job as a teacher... so they reinstated it. Then I had a no nonsense doc that said...they need the nursing and they will need it so just continue it indefinitely. I am not sure you will need it indefinitely but you do need it now. mom and dad need their rest to properly care for the child, there is no question. Just remember that you are your child's advocate whether he/she is impaired or not. good luck to you. > >Reply-To: CHARGE >To: CHARGE >Subject: Re: New Grandson with CHARGE >Date: Mon, 4 Jun 2007 14:45:58 -0700 (PDT) > >Congratulations Grandma on the arrival of your blessed Tyler! How >wonderful for him and his parents to have such a loving and caring >grandmother! > > Please let me stress the importance of what others have said....FIGHT >for nursing. FIGHT, FIGHT, FIGHT. When our insurance initially denied the >nursing, our hospital case worker wrote a lengthy letter with all of Max's >problems and explained that he simply would not be discharged unless he had >nursing lined up. Sure enough, we got nursing and still have some today! >You have to fight, fight, fight and please don't let the parents think they >can do this on their own. They need sleep to be truly refreshed to take >care of Tyler each day and they also need a few moments here and there to >get away and absorb all that is happening. > > With a trach, I thought insurance had to cover nursing because it is >truly a compromised airway and poses quite a threat should something happen >when parents are sleeping. > > Please let us know how we can help. > >Congratulations again and welcome to our CHARGE family! > >Amy and Max > > > >eberrn eberrn@...> wrote: > I am the grandma of 5 week old Tyler. He was born at 36 weeks 4 >lb 15 >oz on May 1. He has bil coloboma of the optic nerves (don't know what >is vision will be), bil. chonanal atresia (4 wk post op and healing >well), post tracheoesphageal fisula (repared at 6 days)repair, g-tube, >Left side facial/ear abnomalities (hearing not evaluated yet), >larynealtracheo malacia (trached at 3 weeks, NOT vented), and as of >Saturday had seizures. >The family has been reading as much as we can regarding this syndrome >in preparation for Tyler's homecoming in a few weeks. We are being >told insurance doe not cover home nursing and Tyler will require 24 hr >care. We are looking at getting 6-8 hrs of nursing care 5 days a week >so that Mom and Dad can get sleep,but are have a difficult time getting >referals and the hospitl case mamager says I may be impossible to find >someone to take an infant with a Trach. >We are waondering if anyone else who has had this experience has any >creative ideas on how the family can manage this with out bring in a >nurse. > > > > > > >Amy McKinley >Mom to MIGHTY MAX -- cHARGE, 19 months old (17 months corrected) >maxupdate.blogspot.com > >--------------------------------- >Boardwalk for $500? In 2007? Ha! >Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! >Games. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2007 Report Share Posted June 5, 2007 cindy like the no noncense drs dont u love them to death welcoem love it here > > Yes, fight for the nursing is right. I did it for years...at one point > they > denied it and my son became sick and I became very sick trying to care for > > him, my other child, my husband and a full time job as a teacher... so > they > reinstated it. Then I had a no nonsense doc that said...they need the > nursing and they will need it so just continue it indefinitely. I am not > sure you will need it indefinitely but you do need it now. mom and dad > need > their rest to properly care for the child, there is no question. > Just remember that you are your child's advocate whether he/she is > impaired > or not. good luck to you. > > >From: Amy McKinley amysmckinley@... > > >Reply-To: CHARGE > >To: CHARGE > >Subject: Re: New Grandson with CHARGE > >Date: Mon, 4 Jun 2007 14:45:58 -0700 (PDT) > > > >Congratulations Grandma on the arrival of your blessed Tyler! How > >wonderful for him and his parents to have such a loving and caring > >grandmother! > > > > Please let me stress the importance of what others have said....FIGHT > >for nursing. FIGHT, FIGHT, FIGHT. When our insurance initially denied the > > >nursing, our hospital case worker wrote a lengthy letter with all of > Max's > >problems and explained that he simply would not be discharged unless he > had > >nursing lined up. Sure enough, we got nursing and still have some today! > >You have to fight, fight, fight and please don't let the parents think > they > >can do this on their own. They need sleep to be truly refreshed to take > >care of Tyler each day and they also need a few moments here and there to > > >get away and absorb all that is happening. > > > > With a trach, I thought insurance had to cover nursing because it is > >truly a compromised airway and poses quite a threat should something > happen > >when parents are sleeping. > > > > Please let us know how we can help. > > > >Congratulations again and welcome to our CHARGE family! > > > >Amy and Max > > > > > > > >eberrn eberrn@... > wrote: > > I am the grandma of 5 week old Tyler. He was born at 36 weeks 4 > >lb 15 > >oz on May 1. He has bil coloboma of the optic nerves (don't know what > >is vision will be), bil. chonanal atresia (4 wk post op and healing > >well), post tracheoesphageal fisula (repared at 6 days)repair, g-tube, > >Left side facial/ear abnomalities (hearing not evaluated yet), > >larynealtracheo malacia (trached at 3 weeks, NOT vented), and as of > >Saturday had seizures. > >The family has been reading as much as we can regarding this syndrome > >in preparation for Tyler's homecoming in a few weeks. We are being > >told insurance doe not cover home nursing and Tyler will require 24 hr > >care. We are looking at getting 6-8 hrs of nursing care 5 days a week > >so that Mom and Dad can get sleep,but are have a difficult time getting > >referals and the hospitl case mamager says I may be impossible to find > >someone to take an infant with a Trach. > >We are waondering if anyone else who has had this experience has any > >creative ideas on how the family can manage this with out bring in a > >nurse. > > > > > > > > > > > > > >Amy McKinley > >Mom to MIGHTY MAX -- cHARGE, 19 months old (17 months corrected) > >maxupdate.blogspot.com > > > >--------------------------------- > >Boardwalk for $500? In 2007? Ha! > >Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! > >Games. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2007 Report Share Posted June 5, 2007 LOL sarah u no i do live in aus but everytime i coem on heere and c a prob like that i think stuff liek uve said hugs ellen > > cindy like the no noncense drs dont u love them to death welcoem love it > here > > > > > > Yes, fight for the nursing is right. I did it for years...at one point > > they > > denied it and my son became sick and I became very sick trying to care > > for > > him, my other child, my husband and a full time job as a teacher... so > > they > > reinstated it. Then I had a no nonsense doc that said...they need the > > nursing and they will need it so just continue it indefinitely. I am not > > > > sure you will need it indefinitely but you do need it now. mom and dad > > need > > their rest to properly care for the child, there is no question. > > Just remember that you are your child's advocate whether he/she is > > impaired > > or not. good luck to you. > > > > >From: Amy McKinley < amysmckinley@... > > > >Reply-To: CHARGE > > >To: CHARGE > > >Subject: Re: New Grandson with CHARGE > > >Date: Mon, 4 Jun 2007 14:45:58 -0700 (PDT) > > > > > >Congratulations Grandma on the arrival of your blessed Tyler! How > > >wonderful for him and his parents to have such a loving and caring > > >grandmother! > > > > > > Please let me stress the importance of what others have said....FIGHT > > >for nursing. FIGHT, FIGHT, FIGHT. When our insurance initially denied > > the > > >nursing, our hospital case worker wrote a lengthy letter with all of > > Max's > > >problems and explained that he simply would not be discharged unless he > > had > > >nursing lined up. Sure enough, we got nursing and still have some > > today! > > >You have to fight, fight, fight and please don't let the parents think > > they > > >can do this on their own. They need sleep to be truly refreshed to take > > > > >care of Tyler each day and they also need a few moments here and there > > to > > >get away and absorb all that is happening. > > > > > > With a trach, I thought insurance had to cover nursing because it is > > >truly a compromised airway and poses quite a threat should something > > happen > > >when parents are sleeping. > > > > > > Please let us know how we can help. > > > > > >Congratulations again and welcome to our CHARGE family! > > > > > >Amy and Max > > > > > > > > > > > >eberrn < eberrn@... > wrote: > > > I am the grandma of 5 week old Tyler. He was born at 36 weeks 4 > > >lb 15 > > >oz on May 1. He has bil coloboma of the optic nerves (don't know what > > >is vision will be), bil. chonanal atresia (4 wk post op and healing > > >well), post tracheoesphageal fisula (repared at 6 days)repair, g-tube, > > >Left side facial/ear abnomalities (hearing not evaluated yet), > > >larynealtracheo malacia (trached at 3 weeks, NOT vented), and as of > > >Saturday had seizures. > > >The family has been reading as much as we can regarding this syndrome > > >in preparation for Tyler's homecoming in a few weeks. We are being > > >told insurance doe not cover home nursing and Tyler will require 24 hr > > >care. We are looking at getting 6-8 hrs of nursing care 5 days a week > > >so that Mom and Dad can get sleep,but are have a difficult time getting > > >referals and the hospitl case mamager says I may be impossible to find > > >someone to take an infant with a Trach. > > >We are waondering if anyone else who has had this experience has any > > >creative ideas on how the family can manage this with out bring in a > > >nurse. > > > > > > > > > > > > > > > > > > > > >Amy McKinley > > >Mom to MIGHTY MAX -- cHARGE, 19 months old (17 months corrected) > > >maxupdate.blogspot.com > > > > > >--------------------------------- > > >Boardwalk for $500? In 2007? Ha! > > >Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! > > > > >Games. > > > > > > Quote Link to comment Share on other sites More sharing options...
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