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Re: New Grandson with CHARGE

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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.

---------------------------------

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Guest guest

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

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Guest guest

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.

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Guest guest

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.

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Guest guest

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.

>

>

>

>

>

>

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Guest guest

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.

>

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Guest guest

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.

>

>

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Guest guest

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.

> >

> >

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Guest guest

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.

> > >

> > >

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