So much going on for Meagan

[Guest guest]

Hi guys! I've missed you all! I read everyday, but have no time to

post! I feel as if life is in fast forward! Anyhow, lots has

happened with Meg; so here's a quick rundown...

Her cochlear implant has basically been a failure. Devastating, but

true. Meg's ENT wanted to place another on the other side (she would

be a part of a case study as two implants are not approved yet by

the FDA), but she would have to undergo another shunt surgery. Her

shunt is in the location the implant would need to go. As much as we

would like to say we tried everything, we decided not to have her

undergo that type of surgery again. But, to our surprise (and some

gifting by God), our ENT said he would place the implant high on her

skull and snake the wire to the cochlea. He has done this with

epileptic patients in the past, and offered it to us. We accepted.

Our " failure letter " has been written by audiology, and is going

through the chian of command with insurances. Once it's made it's

way to the end, the surgery will be booked. The doctor said there is

no guarentee she will hear, but this ear is more promising with the

physical makeup it shows....fingers crossed!

We are currently weaning Meg off two meds; both of which are for her

reflux. They are basically non therapuetic at the time, so the

process should be easy. Although the first week we started, she

vomitted constantly. Come to find out she had double ear infections,

a viral AND a bacterial infection residing in her system! After ten

days on an antibiotic, the cough persisted. We took her to the doc

again, where he diagnosed her with a " nasty " sinus infection. We are

on the last day, of round two, of antibiotics. We will continue the

weaning process next Monday.

Meagan has been showing signs of obstructive apnea for a couple of

months now. She is not on O2 at night, but I was suspicious she was

desating during her sleep. During her hospital stays we watched her

O2 sats, but they were normal. But, her snoring has gotten

ridiculously loud and the obstructive apnea is VERY apparent. At

times, she cannot even get air to move through her airway, and has

to wake herself up for that big breath of oxygen. I brought it up to

her pulmonologist, who ordered a sleep study. Well, Meg and I had an

overnighter at a very luxurious sleep center lastnight, and it

revealed some horrifying results. Meagan wakes herself literally

just about every minute of the night. Her sats range from 50-70%

while sleeping (the sats progressively get worse as her level of

sleep gets deeper). The tech said she was one of the worst cases

he'd ever seen. At times he came in to make sure her " stickies " were

on correctly because he couldn't believe her numbers. So, surgery

will be within the next couple of weeks (we think, we're still

waiting for scheduling). Her tonsils are HUGE, and it looks like the

adenoids are going to come out as well. Still another surgery might

be done on her larynx (for her larygomalacia; aka floppy upper

airway), but we'll have to wait for the doctor to read the sleep

study before that is decided.

On top of all that, I will begin the process of touring and

interviewing prospective preschools for her for the fall. She starts

transitioning into the school system in April. She won't attend

until August, but we start the ball rolling in April. I can't

believe it! I am absolutely sick about it! Someone else taking care

of her?!? Even my respite help are my mom and my mother-in-law! So

far it's been all in the family! I just need to calm

down.....breathe , breathe.

Anyhow, that's it in a nutshell....okay, so in a novel, but I did

tell you Meagan's been busy!

I miss you all, and I hope things settle down here soon so I can get

back into the group!

, mommy to Meagan (CHaRgE) and 2 year old twins, and big

brother 4 years, married to the best daddy in the world for 9

years!

The mention of my child's name might make me cry. Not mentioning my

child's name will break my heart. Unknown

[Guest guest]

I am so glad to hear an update on meagan, I can see why you are so

busy. She has so much going on right now. I hope you get more

answers and I hope things turn around and maybe even slow down a bit

soon.

Hugs,

Crystal mom to (11), (3), and Eva (22 month old CHARGEr)

wife to Dan in Illinois

>

> Hi guys! I've missed you all! I read everyday, but have no time to

> post! I feel as if life is in fast forward! Anyhow, lots has

> happened with Meg; so here's a quick rundown...

>

> Her cochlear implant has basically been a failure. Devastating,

but

> true. Meg's ENT wanted to place another on the other side (she

would

> be a part of a case study as two implants are not approved yet by

> the FDA), but she would have to undergo another shunt surgery. Her

> shunt is in the location the implant would need to go. As much as

we

> would like to say we tried everything, we decided not to have her

> undergo that type of surgery again. But, to our surprise (and some

> gifting by God), our ENT said he would place the implant high on

her

> skull and snake the wire to the cochlea. He has done this with

> epileptic patients in the past, and offered it to us. We accepted.

> Our " failure letter " has been written by audiology, and is going

> through the chian of command with insurances. Once it's made it's

> way to the end, the surgery will be booked. The doctor said there

is

> no guarentee she will hear, but this ear is more promising with

the

> physical makeup it shows....fingers crossed!

>

> We are currently weaning Meg off two meds; both of which are for

her

> reflux. They are basically non therapuetic at the time, so the

> process should be easy. Although the first week we started, she

> vomitted constantly. Come to find out she had double ear

infections,

> a viral AND a bacterial infection residing in her system! After

ten

> days on an antibiotic, the cough persisted. We took her to the doc

> again, where he diagnosed her with a " nasty " sinus infection. We

are

> on the last day, of round two, of antibiotics. We will continue

the

> weaning process next Monday.

>

> Meagan has been showing signs of obstructive apnea for a couple of

> months now. She is not on O2 at night, but I was suspicious she

was

> desating during her sleep. During her hospital stays we watched

her

> O2 sats, but they were normal. But, her snoring has gotten

> ridiculously loud and the obstructive apnea is VERY apparent. At

> times, she cannot even get air to move through her airway, and has

> to wake herself up for that big breath of oxygen. I brought it up

to

> her pulmonologist, who ordered a sleep study. Well, Meg and I had

an

> overnighter at a very luxurious sleep center lastnight, and it

> revealed some horrifying results. Meagan wakes herself literally

> just about every minute of the night. Her sats range from 50-70%

> while sleeping (the sats progressively get worse as her level of

> sleep gets deeper). The tech said she was one of the worst cases

> he'd ever seen. At times he came in to make sure her " stickies "

were

> on correctly because he couldn't believe her numbers. So, surgery

> will be within the next couple of weeks (we think, we're still

> waiting for scheduling). Her tonsils are HUGE, and it looks like

the

> adenoids are going to come out as well. Still another surgery

might

> be done on her larynx (for her larygomalacia; aka floppy upper

> airway), but we'll have to wait for the doctor to read the sleep

> study before that is decided.

>

> On top of all that, I will begin the process of touring and

> interviewing prospective preschools for her for the fall. She

starts

> transitioning into the school system in April. She won't attend

> until August, but we start the ball rolling in April. I can't

> believe it! I am absolutely sick about it! Someone else taking

care

> of her?!? Even my respite help are my mom and my mother-in-law! So

> far it's been all in the family! I just need to calm

> down.....breathe , breathe.

>

> Anyhow, that's it in a nutshell....okay, so in a novel, but I did

> tell you Meagan's been busy!

>

> I miss you all, and I hope things settle down here soon so I can

get

> back into the group!

>

>

>

> , mommy to Meagan (CHaRgE) and 2 year old twins, and

big

> brother 4 years, married to the best daddy in the world for

9

> years!

>

> The mention of my child's name might make me cry. Not mentioning

my

> child's name will break my heart. Unknown

>

[Guest guest]

-

I'm so glad you took the time to fill us in. The pace just doesn't slow

down for you, does it?? The good news is that you are always right on top

of things, managing molehills before they become mountains. It may not feel

that way to you, but it sounds that way from your post. You are so good at

watching and paying attention and following up on your instincts.

I hope all the surgeries are successful, that all of them go uneventfully,

and that Meagan is healthy and ready to go when preschool begins. I know it

seems crazy to think of sending your little one off already. Hopefully, you

will find a setting that feels right, get all the appropriate supports in

place, and the little Miss will be the star of her class.

Michele W

Aubrie's mom

[Guest guest]

Good to hear from you guys !

Janay

Rasha's Mom

>

> Hi guys! I've missed you all! I read everyday, but have no time to

> post! I feel as if life is in fast forward! Anyhow, lots has

> happened with Meg; so here's a quick rundown...

>

> Her cochlear implant has basically been a failure. Devastating,

but

> true. Meg's ENT wanted to place another on the other side (she

would

> be a part of a case study as two implants are not approved yet by

> the FDA), but she would have to undergo another shunt surgery. Her

> shunt is in the location the implant would need to go. As much as

we

> would like to say we tried everything, we decided not to have her

> undergo that type of surgery again. But, to our surprise (and some

> gifting by God), our ENT said he would place the implant high on

her

> skull and snake the wire to the cochlea. He has done this with

> epileptic patients in the past, and offered it to us. We accepted.

> Our " failure letter " has been written by audiology, and is going

> through the chian of command with insurances. Once it's made it's

> way to the end, the surgery will be booked. The doctor said there

is

> no guarentee she will hear, but this ear is more promising with

the

> physical makeup it shows....fingers crossed!

>

> We are currently weaning Meg off two meds; both of which are for

her

> reflux. They are basically non therapuetic at the time, so the

> process should be easy. Although the first week we started, she

> vomitted constantly. Come to find out she had double ear

infections,

> a viral AND a bacterial infection residing in her system! After

ten

> days on an antibiotic, the cough persisted. We took her to the doc

> again, where he diagnosed her with a " nasty " sinus infection. We

are

> on the last day, of round two, of antibiotics. We will continue

the

> weaning process next Monday.

>

> Meagan has been showing signs of obstructive apnea for a couple of

> months now. She is not on O2 at night, but I was suspicious she

was

> desating during her sleep. During her hospital stays we watched

her

> O2 sats, but they were normal. But, her snoring has gotten

> ridiculously loud and the obstructive apnea is VERY apparent. At

> times, she cannot even get air to move through her airway, and has

> to wake herself up for that big breath of oxygen. I brought it up

to

> her pulmonologist, who ordered a sleep study. Well, Meg and I had

an

> overnighter at a very luxurious sleep center lastnight, and it

> revealed some horrifying results. Meagan wakes herself literally

> just about every minute of the night. Her sats range from 50-70%

> while sleeping (the sats progressively get worse as her level of

> sleep gets deeper). The tech said she was one of the worst cases

> he'd ever seen. At times he came in to make sure her " stickies "

were

> on correctly because he couldn't believe her numbers. So, surgery

> will be within the next couple of weeks (we think, we're still

> waiting for scheduling). Her tonsils are HUGE, and it looks like

the

> adenoids are going to come out as well. Still another surgery

might

> be done on her larynx (for her larygomalacia; aka floppy upper

> airway), but we'll have to wait for the doctor to read the sleep

> study before that is decided.

>

> On top of all that, I will begin the process of touring and

> interviewing prospective preschools for her for the fall. She

starts

> transitioning into the school system in April. She won't attend

> until August, but we start the ball rolling in April. I can't

> believe it! I am absolutely sick about it! Someone else taking

care

> of her?!? Even my respite help are my mom and my mother-in-law! So

> far it's been all in the family! I just need to calm

> down.....breathe , breathe.

>

> Anyhow, that's it in a nutshell....okay, so in a novel, but I did

> tell you Meagan's been busy!

>

> I miss you all, and I hope things settle down here soon so I can

get

> back into the group!

>

>

>

> , mommy to Meagan (CHaRgE) and 2 year old twins, and

big

> brother 4 years, married to the best daddy in the world for

9

> years!

>

> The mention of my child's name might make me cry. Not mentioning

my

> child's name will break my heart. Unknown

>

[Guest guest]

wow good luck with the surgeries hugs ellen

>

> Good to hear from you guys !

>

> Janay

> Rasha's Mom

>

>

> >

> > Hi guys! I've missed you all! I read everyday, but have no time to

> > post! I feel as if life is in fast forward! Anyhow, lots has

> > happened with Meg; so here's a quick rundown...

> >

> > Her cochlear implant has basically been a failure. Devastating,

> but

> > true. Meg's ENT wanted to place another on the other side (she

> would

> > be a part of a case study as two implants are not approved yet by

> > the FDA), but she would have to undergo another shunt surgery. Her

> > shunt is in the location the implant would need to go. As much as

> we

> > would like to say we tried everything, we decided not to have her

> > undergo that type of surgery again. But, to our surprise (and some

> > gifting by God), our ENT said he would place the implant high on

> her

> > skull and snake the wire to the cochlea. He has done this with

> > epileptic patients in the past, and offered it to us. We accepted.

> > Our " failure letter " has been written by audiology, and is going

> > through the chian of command with insurances. Once it's made it's

> > way to the end, the surgery will be booked. The doctor said there

> is

> > no guarentee she will hear, but this ear is more promising with

> the

> > physical makeup it shows....fingers crossed!

> >

> > We are currently weaning Meg off two meds; both of which are for

> her

> > reflux. They are basically non therapuetic at the time, so the

> > process should be easy. Although the first week we started, she

> > vomitted constantly. Come to find out she had double ear

> infections,

> > a viral AND a bacterial infection residing in her system! After

> ten

> > days on an antibiotic, the cough persisted. We took her to the doc

> > again, where he diagnosed her with a " nasty " sinus infection. We

> are

> > on the last day, of round two, of antibiotics. We will continue

> the

> > weaning process next Monday.

> >

> > Meagan has been showing signs of obstructive apnea for a couple of

> > months now. She is not on O2 at night, but I was suspicious she

> was

> > desating during her sleep. During her hospital stays we watched

> her

> > O2 sats, but they were normal. But, her snoring has gotten

> > ridiculously loud and the obstructive apnea is VERY apparent. At

> > times, she cannot even get air to move through her airway, and has

> > to wake herself up for that big breath of oxygen. I brought it up

> to

> > her pulmonologist, who ordered a sleep study. Well, Meg and I had

> an

> > overnighter at a very luxurious sleep center lastnight, and it

> > revealed some horrifying results. Meagan wakes herself literally

> > just about every minute of the night. Her sats range from 50-70%

> > while sleeping (the sats progressively get worse as her level of

> > sleep gets deeper). The tech said she was one of the worst cases

> > he'd ever seen. At times he came in to make sure her " stickies "

> were

> > on correctly because he couldn't believe her numbers. So, surgery

> > will be within the next couple of weeks (we think, we're still

> > waiting for scheduling). Her tonsils are HUGE, and it looks like

> the

> > adenoids are going to come out as well. Still another surgery

> might

> > be done on her larynx (for her larygomalacia; aka floppy upper

> > airway), but we'll have to wait for the doctor to read the sleep

> > study before that is decided.

> >

> > On top of all that, I will begin the process of touring and

> > interviewing prospective preschools for her for the fall. She

> starts

> > transitioning into the school system in April. She won't attend

> > until August, but we start the ball rolling in April. I can't

> > believe it! I am absolutely sick about it! Someone else taking

> care

> > of her?!? Even my respite help are my mom and my mother-in-law! So

> > far it's been all in the family! I just need to calm

> > down.....breathe , breathe.

> >

> > Anyhow, that's it in a nutshell....okay, so in a novel, but I did

> > tell you Meagan's been busy!

> >

> > I miss you all, and I hope things settle down here soon so I can

> get

> > back into the group!

> >

> >

> >

> > , mommy to Meagan (CHaRgE) and 2 year old twins, and

> big

> > brother 4 years, married to the best daddy in the world for

> 9

> > years!

> >

> > The mention of my child's name might make me cry. Not mentioning

> my

> > child's name will break my heart. Unknown

> >

>

>

>

[Guest guest]

So in the meantime are they putting her on CPAP or O2 at night? I am so sorry

about the cochlear implant situation....so frustrating. Please, please, please

keep us posted on everything. Love hearing about lil' sweet Meagan! (Just

think what a difference it will make on her development, etc. when she gets her

sats up at night and doesn't have to wake up to breathe! WOW!)

Melton wrote: Hi guys! I've missed you all!

I read everyday, but have no time to

post! I feel as if life is in fast forward! Anyhow, lots has

happened with Meg; so here's a quick rundown...

Her cochlear implant has basically been a failure. Devastating, but

true. Meg's ENT wanted to place another on the other side (she would

be a part of a case study as two implants are not approved yet by

the FDA), but she would have to undergo another shunt surgery. Her

shunt is in the location the implant would need to go. As much as we

would like to say we tried everything, we decided not to have her

undergo that type of surgery again. But, to our surprise (and some

gifting by God), our ENT said he would place the implant high on her

skull and snake the wire to the cochlea. He has done this with

epileptic patients in the past, and offered it to us. We accepted.

Our " failure letter " has been written by audiology, and is going

through the chian of command with insurances. Once it's made it's

way to the end, the surgery will be booked. The doctor said there is

no guarentee she will hear, but this ear is more promising with the

physical makeup it shows....fingers crossed!

We are currently weaning Meg off two meds; both of which are for her

reflux. They are basically non therapuetic at the time, so the

process should be easy. Although the first week we started, she

vomitted constantly. Come to find out she had double ear infections,

a viral AND a bacterial infection residing in her system! After ten

days on an antibiotic, the cough persisted. We took her to the doc

again, where he diagnosed her with a " nasty " sinus infection. We are

on the last day, of round two, of antibiotics. We will continue the

weaning process next Monday.

Meagan has been showing signs of obstructive apnea for a couple of

months now. She is not on O2 at night, but I was suspicious she was

desating during her sleep. During her hospital stays we watched her

O2 sats, but they were normal. But, her snoring has gotten

ridiculously loud and the obstructive apnea is VERY apparent. At

times, she cannot even get air to move through her airway, and has

to wake herself up for that big breath of oxygen. I brought it up to

her pulmonologist, who ordered a sleep study. Well, Meg and I had an

overnighter at a very luxurious sleep center lastnight, and it

revealed some horrifying results. Meagan wakes herself literally

just about every minute of the night. Her sats range from 50-70%

while sleeping (the sats progressively get worse as her level of

sleep gets deeper). The tech said she was one of the worst cases

he'd ever seen. At times he came in to make sure her " stickies " were

on correctly because he couldn't believe her numbers. So, surgery

will be within the next couple of weeks (we think, we're still

waiting for scheduling). Her tonsils are HUGE, and it looks like the

adenoids are going to come out as well. Still another surgery might

be done on her larynx (for her larygomalacia; aka floppy upper

airway), but we'll have to wait for the doctor to read the sleep

study before that is decided.

On top of all that, I will begin the process of touring and

interviewing prospective preschools for her for the fall. She starts

transitioning into the school system in April. She won't attend

until August, but we start the ball rolling in April. I can't

believe it! I am absolutely sick about it! Someone else taking care

of her?!? Even my respite help are my mom and my mother-in-law! So

far it's been all in the family! I just need to calm

down.....breathe , breathe.

Anyhow, that's it in a nutshell....okay, so in a novel, but I did

tell you Meagan's been busy!

I miss you all, and I hope things settle down here soon so I can get

back into the group!

, mommy to Meagan (CHaRgE) and 2 year old twins, and big

brother 4 years, married to the best daddy in the world for 9

years!

The mention of my child's name might make me cry. Not mentioning my

child's name will break my heart. Unknown

Amy McKinley

Mom to MIGHTY MAX -- cHARGE, 19 months old (17 months corrected)

maxupdate.blogspot.com

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

Need a quick answer? Get one in minutes from people who know. Ask your question

on Yahoo! Answers.

[Guest guest]

As for the sleep apnea, my daughter had her adenoids removed and then

the apnea began. It was so bad that we would have to wake her throughout the

night b/c she was stopping breathing for long periods of time. We went to see

an otolaryngologist (Is that what it is called and spelled for that matter?) and

he said her tonsils were huge and that was the cause for the apnea. He removed

them and said they were stage 4 which is the largest that they can get and that

they were so decayed that they just fell out in pieces. He said that it was

quite disgusting. Anyways, the apnea was better instantly even in post op. So

for as much as you probably don't want to do surgery it was worth it.

So much going on for Meagan

Hi guys! I've missed you all! I read everyday, but have no time to

post! I feel as if life is in fast forward! Anyhow, lots has

happened with Meg; so here's a quick rundown...

Her cochlear implant has basically been a failure. Devastating, but

true. Meg's ENT wanted to place another on the other side (she would

be a part of a case study as two implants are not approved yet by

the FDA), but she would have to undergo another shunt surgery. Her

shunt is in the location the implant would need to go. As much as we

would like to say we tried everything, we decided not to have her

undergo that type of surgery again. But, to our surprise (and some

gifting by God), our ENT said he would place the implant high on her

skull and snake the wire to the cochlea. He has done this with

epileptic patients in the past, and offered it to us. We accepted.

Our " failure letter " has been written by audiology, and is going

through the chian of command with insurances. Once it's made it's

way to the end, the surgery will be booked. The doctor said there is

no guarentee she will hear, but this ear is more promising with the

physical makeup it shows....fingers crossed!

We are currently weaning Meg off two meds; both of which are for her

reflux. They are basically non therapuetic at the time, so the

process should be easy. Although the first week we started, she

vomitted constantly. Come to find out she had double ear infections,

a viral AND a bacterial infection residing in her system! After ten

days on an antibiotic, the cough persisted. We took her to the doc

again, where he diagnosed her with a " nasty " sinus infection. We are

on the last day, of round two, of antibiotics. We will continue the

weaning process next Monday.

Meagan has been showing signs of obstructive apnea for a couple of

months now. She is not on O2 at night, but I was suspicious she was

desating during her sleep. During her hospital stays we watched her

O2 sats, but they were normal. But, her snoring has gotten

ridiculously loud and the obstructive apnea is VERY apparent. At

times, she cannot even get air to move through her airway, and has

to wake herself up for that big breath of oxygen. I brought it up to

her pulmonologist, who ordered a sleep study. Well, Meg and I had an

overnighter at a very luxurious sleep center lastnight, and it

revealed some horrifying results. Meagan wakes herself literally

just about every minute of the night. Her sats range from 50-70%

while sleeping (the sats progressively get worse as her level of

sleep gets deeper). The tech said she was one of the worst cases

he'd ever seen. At times he came in to make sure her " stickies " were

on correctly because he couldn't believe her numbers. So, surgery

will be within the next couple of weeks (we think, we're still

waiting for scheduling). Her tonsils are HUGE, and it looks like the

adenoids are going to come out as well. Still another surgery might

be done on her larynx (for her larygomalacia; aka floppy upper

airway), but we'll have to wait for the doctor to read the sleep

study before that is decided.

On top of all that, I will begin the process of touring and

interviewing prospective preschools for her for the fall. She starts

transitioning into the school system in April. She won't attend

until August, but we start the ball rolling in April. I can't

believe it! I am absolutely sick about it! Someone else taking care

of her?!? Even my respite help are my mom and my mother-in-law! So

far it's been all in the family! I just need to calm

down.....breathe , breathe.

Anyhow, that's it in a nutshell....okay, so in a novel, but I did

tell you Meagan's been busy!

I miss you all, and I hope things settle down here soon so I can get

back into the group!

, mommy to Meagan (CHaRgE) and 2 year old twins, and big

brother 4 years, married to the best daddy in the world for 9

years!

The mention of my child's name might make me cry. Not mentioning my

child's name will break my heart. Unknown

[Guest guest]

,

Sorry to hear that Meagan's first implant didn't work. Something made me

think of your last post about her implant yesterday, so I was wondering how it

was going. I hope the second implant turns out good for her. It sounds like

everything has fallen into place for it well so far, so hopefully things will

work out better with this second one. Please keep us posted on the surgery

date.

Sorry, too, to hear that Meagan has to have her tonsils and adenoids removed,

but it sounds like this might be a huge relief to her in letting her sleep more

soundly.

I hope things slow down for you guys soon!

, mom to (5)

http://kauffmanlak.blogspot.com/

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

Need Mail bonding?

Go to the Yahoo! Mail Q & A for great tips from Yahoo! Answers users.