Meagan had emergency surgery lastnight...

[Guest guest]

As you all know, Meagan has been very sick as of late. We finally took her

back to the ER Monday morning after talking to her neuro surgeon's staff.

Luckily, while fighting for Meagan on the phone, I was passed off the the

Nurse Practitioner who took care of us in the PICU after her last brain

surgery. She agreed that something was not right. Once in the ER, and upon

inspection of her " bubble " (which was now larger), she alerted Meagan's

neurosurgeon that she was suspicious the patch had broken, or a suture had

torn in turn leaking cerebral spinal fluid. We were admitted into the PICU

that day and an MRI was ordered of her brain. It was the news we were

dreading. Meagan's hydrocephalus was now out of control resulting in her

brain being pushed against her skull. There was so much pressure from the

hydrocephalus, that her ventricles were remarkably larger, forcing the water

around her brain out (to make room for the brain), and her Chiari was worse

than ever because it was again being pushed down the spinal column. The

bubble " was the fluid from around her brain looking for away out. Dr Moss

came in Tuesday morning and gave us the grim truth. His words were that

Meagan was in trouble. He said within the next couple of days, the patch

would tear open and her brain (specifically her cerebellum) would be forced

out trough the opening. He also said that a week from now, we wouldn't be

having this conversation because if Meagan would have made it that long, he

would be wheeling her into the OR so fast that it would have left and

I spinning in her room not knowing what had just happened. Her vomiting and

nausea were direct results of her hydrocephalus being out of control. The

only option we had at this point was to shunt her. He was going to give us

the night to digest this information before we signed the consent forms, but

and I realized that our backs were against the wall. The only thing we

could do to save her was to do this surgery. The surgery was bumped up done

lastnight after a bout of vomiting from Meagan, and after Meagan's nurse

inspected her " bubble " . It was now firm to the touch meaning that the bovine

patch that was placed in Meagan was about to burst. We signed consent forms

immediately, and she was in the OR within and hour. The surgery went well,

and was successful. The " bubble " had softened by the time she was sutured

back up, and by the time I left the hospital at 10 PM, it was gone. A cat

scan was done this morning to make sure the shunt was in the correct places

(and it was), and it showed that her ventricles were already shrinking.

Within the next couple of months, Meagan's ventricles will be of normal size

This should allow the water to return around her brain and her cerebellum

to return to it's original corrected position. The shunt is in her right

ventricle, and runs down her neck into her abdominal cavity. At the moment

it is not pretty, as Meagan has lost 4 pounds (which she couldn't afford to

lose in the beginning) and you can see the path the tube runs down. When she

cries, it looks like she has a garden hose running down the length of her

body. But, we have seen a complete 180 in 's behavior and tolerance. An

hour after surgery, she was playing! I type this with tears in my eyes

because I haven't seen my little girl smile in weeks. She is home tonight,

and was greeted by some very excited siblings and grandparents. She seems to

be very comfortable and happy to be home. There are definite risks with

having a shunt, but they are minimal in comparison to the beautiful life it

saved.

, mommy to Meagan (CHaRgE) and 20 month twins, and big brother

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

[Guest guest]

Dear -

With tears on my face all I am just catching my breath. Bless you and your

family. The grace, steadfast strength, faith, willingness and love which kept

your wits about you as you held you child's life moment by moment surely has

made all of life beautiful and good.

Thank God for Meagan, for you and your family and for all the unmerited grace

and goodness our everyday lives have in abundance.

with love,

yuka

[Guest guest]

,

I am so sorry to read this news but am gladdened at the same time. You knew.

You just knew. Yes, you did save your babies life with your back up against

the wall. But you pushed for that wall now didn't you? I love the part that

she is home and happy. Oh you must be so delighted.

There are miracles in this life and this is one.

Bonnie

[Guest guest]

thank god for the mummy intuition with otu it she would of been dead and so

would i and many other chargers on here if it wastn for you wonderful mummys

thank god for you i love you all many hugs your greatest fan ellen lol

>

> Dear -

>

> With tears on my face all I am just catching my breath. Bless you and your

> family. The grace, steadfast strength, faith, willingness and love which

> kept your wits about you as you held you child's life moment by moment

> surely has made all of life beautiful and good.

>

> Thank God for Meagan, for you and your family and for all the unmerited

> grace and goodness our everyday lives have in abundance.

>

> with love,

> yuka

>

>

[Guest guest]

,

I'm exceedingly happy she was finally seen and treated-but I don't have a

good feeling about this group after everything they put you through-not

listening to you-not seeing her-that's not right!

Thank God they finally did the right thing, in time, and she's recovered.

You should have had immediate access to that nursing staff every day, every

night after the surgery!

From your experience and mine-you just got handed the biggest lesson in

CHARGE-land.

You must trust your instincts-and make all the noise necessary-take her in

to be seen whenever you sense the need. And if it turns out there's no

problem-terrific-but that's what they're there for. You don't have to worry-I'm

sure

you're too busy to run in there un necessarily! LOL.

I only have second-hand knowledge on shunts, but I believe they can be

tricky. They can act up slowly or quickly. In addition to everything they

should

have taught you about what to watch for, prior to discharge, please also read

up about shunts and read on the chiari listserv.

It makes me ill that they didn't react the minute you expressed any

concern-never mind the fact that you were reporting the bulge to them. They've

left

me with the feeling that you're going to have to be the knowledgeable one

here.

Thank goodness she's home and smiley! Whew. What a relief!

Good job, Mom!

in Ma. ( 21 yrs)

[Guest guest]

wow what an ordeal

you are in our prayers

Cathie

[Guest guest]

,

Your post is so full of love. I am happy to hear that Meagan is getting back

to her old spunky self and that you are feeling good about the surgical

procedure. A shunt is not something you wanted, but clearly it has made a

difference for Meagan‹and quickly!! We have several kids with shunts in my

program and they are doing just great. It allows them to grow and learn and

they participate in all activities. Yes, it must be thought about and yes,

when the kids get sick with vomiting or are ³off² it is the first thing to

think of, but it just becomes part of them. And..that garden hose appearance

will go away!!!

Good news, thanks for sharing.

pam

> As you all know, Meagan has been very sick as of late. We finally took her

> back to the ER Monday morning after talking to her neuro surgeon's staff.

> Luckily, while fighting for Meagan on the phone, I was passed off the the

> Nurse Practitioner who took care of us in the PICU after her last brain

> surgery. She agreed that something was not right. Once in the ER, and upon

> inspection of her " bubble " (which was now larger), she alerted Meagan's

> neurosurgeon that she was suspicious the patch had broken, or a suture had

> torn in turn leaking cerebral spinal fluid. We were admitted into the PICU

> that day and an MRI was ordered of her brain. It was the news we were

> dreading. Meagan's hydrocephalus was now out of control resulting in her

> brain being pushed against her skull. There was so much pressure from the

> hydrocephalus, that her ventricles were remarkably larger, forcing the water

> around her brain out (to make room for the brain), and her Chiari was worse

> than ever because it was again being pushed down the spinal column. The

> bubble " was the fluid from around her brain looking for away out. Dr Moss

> came in Tuesday morning and gave us the grim truth. His words were that

> Meagan was in trouble. He said within the next couple of days, the patch

> would tear open and her brain (specifically her cerebellum) would be forced

> out trough the opening. He also said that a week from now, we wouldn't be

> having this conversation because if Meagan would have made it that long, he

> would be wheeling her into the OR so fast that it would have left and

> I spinning in her room not knowing what had just happened. Her vomiting and

> nausea were direct results of her hydrocephalus being out of control. The

> only option we had at this point was to shunt her. He was going to give us

> the night to digest this information before we signed the consent forms, but

> and I realized that our backs were against the wall. The only thing we

> could do to save her was to do this surgery. The surgery was bumped up done

> lastnight after a bout of vomiting from Meagan, and after Meagan's nurse

> inspected her " bubble " . It was now firm to the touch meaning that the bovine

> patch that was placed in Meagan was about to burst. We signed consent forms

> immediately, and she was in the OR within and hour. The surgery went well,

> and was successful. The " bubble " had softened by the time she was sutured

> back up, and by the time I left the hospital at 10 PM, it was gone. A cat

> scan was done this morning to make sure the shunt was in the correct places

> (and it was), and it showed that her ventricles were already shrinking.

> Within the next couple of months, Meagan's ventricles will be of normal size

> This should allow the water to return around her brain and her cerebellum

> to return to it's original corrected position. The shunt is in her right

> ventricle, and runs down her neck into her abdominal cavity. At the moment

> it is not pretty, as Meagan has lost 4 pounds (which she couldn't afford to

> lose in the beginning) and you can see the path the tube runs down. When she

> cries, it looks like she has a garden hose running down the length of her

> body. But, we have seen a complete 180 in 's behavior and tolerance. An

> hour after surgery, she was playing! I type this with tears in my eyes

> because I haven't seen my little girl smile in weeks. She is home tonight,

> and was greeted by some very excited siblings and grandparents. She seems to

> be very comfortable and happy to be home. There are definite risks with

> having a shunt, but they are minimal in comparison to the beautiful life it

> saved.

>

>

> , mommy to Meagan (CHaRgE) and 20 month twins, and big brother

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

>

>

[Guest guest]

Oh, -

Thank goodness you got her to the right dr soon enough. How frustrating

that you couldn't get her there sooner, huh? I'm so glad you got things

corrected in time and that she's already back to her healthy " normal "

personality! I know you will be cherishing her every day. My heart is

swelling just thinking of the emotions you've been thru! Hugs.

Michele W

Aubrie's mom

[Guest guest]

>

> wow what an ordeal

> you are in our prayers

> Cathie

>

>

>

[Guest guest]

Forgot to send a message!

To Meagy and family... lots of love and hugs Take care and I hope things

start improving for Meagy.

Chantelle

--

My spelling's kinda wobbly. It's good spelling but the letters wobble and

end up in the wrong places. - Winnie the Pooh

[Guest guest]

,

I read your email with tears streaming down my face, I am so sorry

for what you and Meagan have been through.

Good luck during recovery and let us know how she is doing.

love,

(mom to , just turned 5 CHaRGEr in Australia)

>

> As you all know, Meagan has been very sick as of late. We finally

took her

> back to the ER Monday morning after talking to her neuro surgeon's

staff.

> Luckily, while fighting for Meagan on the phone, I was passed off

the the

> Nurse Practitioner who took care of us in the PICU after her last

brain

> surgery. She agreed that something was not right. Once in the ER,

and upon

> inspection of her " bubble " (which was now larger), she alerted

Meagan's

> neurosurgeon that she was suspicious the patch had broken, or a

suture had

> torn in turn leaking cerebral spinal fluid. We were admitted into

the PICU

> that day and an MRI was ordered of her brain. It was the news we

were

> dreading. Meagan's hydrocephalus was now out of control resulting

in her

> brain being pushed against her skull. There was so much pressure

from the

> hydrocephalus, that her ventricles were remarkably larger, forcing

the water

> around her brain out (to make room for the brain), and her Chiari

was worse

> than ever because it was again being pushed down the spinal

column. The

> bubble " was the fluid from around her brain looking for away out.

Dr Moss

> came in Tuesday morning and gave us the grim truth. His words were

that

> Meagan was in trouble. He said within the next couple of days, the

patch

> would tear open and her brain (specifically her cerebellum) would

be forced

> out trough the opening. He also said that a week from now, we

wouldn't be

> having this conversation because if Meagan would have made it that

long, he

> would be wheeling her into the OR so fast that it would have left

and

> I spinning in her room not knowing what had just happened. Her

vomiting and

> nausea were direct results of her hydrocephalus being out of

control. The

> only option we had at this point was to shunt her. He was going to

give us

> the night to digest this information before we signed the consent

forms, but

> and I realized that our backs were against the wall. The

only thing we

> could do to save her was to do this surgery. The surgery was

bumped up done

> lastnight after a bout of vomiting from Meagan, and after Meagan's

nurse

> inspected her " bubble " . It was now firm to the touch meaning that

the bovine

> patch that was placed in Meagan was about to burst. We signed

consent forms

> immediately, and she was in the OR within and hour. The surgery

went well,

> and was successful. The " bubble " had softened by the time she was

sutured

> back up, and by the time I left the hospital at 10 PM, it was

gone. A cat

> scan was done this morning to make sure the shunt was in the

correct places

> (and it was), and it showed that her ventricles were already

shrinking.

> Within the next couple of months, Meagan's ventricles will be of

normal size

> This should allow the water to return around her brain and her

cerebellum

> to return to it's original corrected position. The shunt is in her

right

> ventricle, and runs down her neck into her abdominal cavity. At

the moment

> it is not pretty, as Meagan has lost 4 pounds (which she couldn't

afford to

> lose in the beginning) and you can see the path the tube runs

down. When she

> cries, it looks like she has a garden hose running down the length

of her

> body. But, we have seen a complete 180 in 's behavior and

tolerance. An

> hour after surgery, she was playing! I type this with tears in my

eyes

> because I haven't seen my little girl smile in weeks. She is home

tonight,

> and was greeted by some very excited siblings and grandparents.

She seems to

> be very comfortable and happy to be home. There are definite risks

with

> having a shunt, but they are minimal in comparison to the

beautiful life it

> saved.

>

>

> , mommy to Meagan (CHaRgE) and 20 month twins, and big

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

years!

>

>

[Guest guest]

Reading this made me think we know whats best for out little ones

and I hate when we call the hospital and they tell us they are sure

its nothing and leave it at that. It has happened to us and I am

glad I took Eva in just to be safe.

I am glad you listened to your gut and she is now home with her

loving family.

God bless you!!

Hugs,

Crystal mom to (10), (3), and Eva (17 month old CHARGEr)

wife to Dan

>

> As you all know, Meagan has been very sick as of late. We finally

took her

> back to the ER Monday morning after talking to her neuro surgeon's

staff.

> Luckily, while fighting for Meagan on the phone, I was passed off

the the

> Nurse Practitioner who took care of us in the PICU after her last

brain

> surgery. She agreed that something was not right. Once in the ER,

and upon

> inspection of her " bubble " (which was now larger), she alerted

Meagan's

> neurosurgeon that she was suspicious the patch had broken, or a

suture had

> torn in turn leaking cerebral spinal fluid. We were admitted into

the PICU

> that day and an MRI was ordered of her brain. It was the news we

were

> dreading. Meagan's hydrocephalus was now out of control resulting

in her

> brain being pushed against her skull. There was so much pressure

from the

> hydrocephalus, that her ventricles were remarkably larger, forcing

the water

> around her brain out (to make room for the brain), and her Chiari

was worse

> than ever because it was again being pushed down the spinal

column. The

> bubble " was the fluid from around her brain looking for away out.

Dr Moss

> came in Tuesday morning and gave us the grim truth. His words were

that

> Meagan was in trouble. He said within the next couple of days, the

patch

> would tear open and her brain (specifically her cerebellum) would

be forced

> out trough the opening. He also said that a week from now, we

wouldn't be

> having this conversation because if Meagan would have made it that

long, he

> would be wheeling her into the OR so fast that it would have left

and

> I spinning in her room not knowing what had just happened. Her

vomiting and

> nausea were direct results of her hydrocephalus being out of

control. The

> only option we had at this point was to shunt her. He was going to

give us

> the night to digest this information before we signed the consent

forms, but

> and I realized that our backs were against the wall. The

only thing we

> could do to save her was to do this surgery. The surgery was

bumped up done

> lastnight after a bout of vomiting from Meagan, and after Meagan's

nurse

> inspected her " bubble " . It was now firm to the touch meaning that

the bovine

> patch that was placed in Meagan was about to burst. We signed

consent forms

> immediately, and she was in the OR within and hour. The surgery

went well,

> and was successful. The " bubble " had softened by the time she was

sutured

> back up, and by the time I left the hospital at 10 PM, it was

gone. A cat

> scan was done this morning to make sure the shunt was in the

correct places

> (and it was), and it showed that her ventricles were already

shrinking.

> Within the next couple of months, Meagan's ventricles will be of

normal size

> This should allow the water to return around her brain and her

cerebellum

> to return to it's original corrected position. The shunt is in her

right

> ventricle, and runs down her neck into her abdominal cavity. At

the moment

> it is not pretty, as Meagan has lost 4 pounds (which she couldn't

afford to

> lose in the beginning) and you can see the path the tube runs

down. When she

> cries, it looks like she has a garden hose running down the length

of her

> body. But, we have seen a complete 180 in 's behavior and

tolerance. An

> hour after surgery, she was playing! I type this with tears in my

eyes

> because I haven't seen my little girl smile in weeks. She is home

tonight,

> and was greeted by some very excited siblings and grandparents.

She seems to

> be very comfortable and happy to be home. There are definite risks

with

> having a shunt, but they are minimal in comparison to the

beautiful life it

> saved.

>

>

> , mommy to Meagan (CHaRgE) and 20 month twins, and big

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

years!

>

>

[Guest guest]

Thank god she is ok and back home, it must have been horrendous for you all.

give her a big hug from us love Les x

>

> Reading this made me think we know whats best for out little ones

> and I hate when we call the hospital and they tell us they are sure

> its nothing and leave it at that. It has happened to us and I am

> glad I took Eva in just to be safe.

> I am glad you listened to your gut and she is now home with her

> loving family.

> God bless you!!

> Hugs,

> Crystal mom to (10), (3), and Eva (17 month old CHARGEr)

> wife to Dan

>

>

> >

> > As you all know, Meagan has been very sick as of late. We finally

> took her

> > back to the ER Monday morning after talking to her neuro surgeon's

> staff.

> > Luckily, while fighting for Meagan on the phone, I was passed off

> the the

> > Nurse Practitioner who took care of us in the PICU after her last

> brain

> > surgery. She agreed that something was not right. Once in the ER,

> and upon

> > inspection of her " bubble " (which was now larger), she alerted

> Meagan's

> > neurosurgeon that she was suspicious the patch had broken, or a

> suture had

> > torn in turn leaking cerebral spinal fluid. We were admitted into

> the PICU

> > that day and an MRI was ordered of her brain. It was the news we

> were

> > dreading. Meagan's hydrocephalus was now out of control resulting

> in her

> > brain being pushed against her skull. There was so much pressure

> from the

> > hydrocephalus, that her ventricles were remarkably larger, forcing

> the water

> > around her brain out (to make room for the brain), and her Chiari

> was worse

> > than ever because it was again being pushed down the spinal

> column. The

> > bubble " was the fluid from around her brain looking for away out.

> Dr Moss

> > came in Tuesday morning and gave us the grim truth. His words were

> that

> > Meagan was in trouble. He said within the next couple of days, the

> patch

> > would tear open and her brain (specifically her cerebellum) would

> be forced

> > out trough the opening. He also said that a week from now, we

> wouldn't be

> > having this conversation because if Meagan would have made it that

> long, he

> > would be wheeling her into the OR so fast that it would have left

> and

> > I spinning in her room not knowing what had just happened. Her

> vomiting and

> > nausea were direct results of her hydrocephalus being out of

> control. The

> > only option we had at this point was to shunt her. He was going to

> give us

> > the night to digest this information before we signed the consent

> forms, but

> > and I realized that our backs were against the wall. The

> only thing we

> > could do to save her was to do this surgery. The surgery was

> bumped up done

> > lastnight after a bout of vomiting from Meagan, and after Meagan's

> nurse

> > inspected her " bubble " . It was now firm to the touch meaning that

> the bovine

> > patch that was placed in Meagan was about to burst. We signed

> consent forms

> > immediately, and she was in the OR within and hour. The surgery

> went well,

> > and was successful. The " bubble " had softened by the time she was

> sutured

> > back up, and by the time I left the hospital at 10 PM, it was

> gone. A cat

> > scan was done this morning to make sure the shunt was in the

> correct places

> > (and it was), and it showed that her ventricles were already

> shrinking.

> > Within the next couple of months, Meagan's ventricles will be of

> normal size

> > This should allow the water to return around her brain and her

> cerebellum

> > to return to it's original corrected position. The shunt is in her

> right

> > ventricle, and runs down her neck into her abdominal cavity. At

> the moment

> > it is not pretty, as Meagan has lost 4 pounds (which she couldn't

> afford to

> > lose in the beginning) and you can see the path the tube runs

> down. When she

> > cries, it looks like she has a garden hose running down the length

> of her

> > body. But, we have seen a complete 180 in 's behavior and

> tolerance. An

> > hour after surgery, she was playing! I type this with tears in my

> eyes

> > because I haven't seen my little girl smile in weeks. She is home

> tonight,

> > and was greeted by some very excited siblings and grandparents.

> She seems to

> > be very comfortable and happy to be home. There are definite risks

> with

> > having a shunt, but they are minimal in comparison to the

> beautiful life it

> > saved.

> >

> >

> > , mommy to Meagan (CHaRgE) and 20 month twins, and big

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

> years!

> >

> >

[Guest guest]

and family,

Thank you for the update. My thoughts and prayers go

out to you all. If I were there, I'd hug you, but

then that would probably make us both (all) cry!

God bless you,

ina, mom to Luca (3) & Vinny (15 months w/ cHARgE)

--- and Melton wrote:

> As you all know, Meagan has been very sick as of

> late. We finally took her

> back to the ER Monday morning after talking to her

> neuro surgeon's staff.

> Luckily, while fighting for Meagan on the phone, I

> was passed off the the

> Nurse Practitioner who took care of us in the PICU

> after her last brain

> surgery. She agreed that something was not right.

> Once in the ER, and upon

> inspection of her " bubble " (which was now larger),

> she alerted Meagan's

> neurosurgeon that she was suspicious the patch had

> broken, or a suture had

> torn in turn leaking cerebral spinal fluid. We were

> admitted into the PICU

> that day and an MRI was ordered of her brain. It was

> the news we were

> dreading. Meagan's hydrocephalus was now out of

> control resulting in her

> brain being pushed against her skull. There was so

> much pressure from the

> hydrocephalus, that her ventricles were remarkably

> larger, forcing the water

> around her brain out (to make room for the brain),

> and her Chiari was worse

> than ever because it was again being pushed down the

> spinal column. The

> bubble " was the fluid from around her brain looking

> for away out. Dr Moss

> came in Tuesday morning and gave us the grim truth.

> His words were that

> Meagan was in trouble. He said within the next

> couple of days, the patch

> would tear open and her brain (specifically her

> cerebellum) would be forced

> out trough the opening. He also said that a week

> from now, we wouldn't be

> having this conversation because if Meagan would

> have made it that long, he

> would be wheeling her into the OR so fast that it

> would have left and

> I spinning in her room not knowing what had just

> happened. Her vomiting and

> nausea were direct results of her hydrocephalus

> being out of control. The

> only option we had at this point was to shunt her.

> He was going to give us

> the night to digest this information before we

> signed the consent forms, but

> and I realized that our backs were against the

> wall. The only thing we

> could do to save her was to do this surgery. The

> surgery was bumped up done

> lastnight after a bout of vomiting from Meagan, and

> after Meagan's nurse

> inspected her " bubble " . It was now firm to the touch

> meaning that the bovine

> patch that was placed in Meagan was about to burst.

> We signed consent forms

> immediately, and she was in the OR within and hour.

> The surgery went well,

> and was successful. The " bubble " had softened by the

> time she was sutured

> back up, and by the time I left the hospital at 10

> PM, it was gone. A cat

> scan was done this morning to make sure the shunt

> was in the correct places

> (and it was), and it showed that her ventricles were

> already shrinking.

> Within the next couple of months, Meagan's

> ventricles will be of normal size

> This should allow the water to return around her

> brain and her cerebellum

> to return to it's original corrected position. The

> shunt is in her right

> ventricle, and runs down her neck into her abdominal

> cavity. At the moment

> it is not pretty, as Meagan has lost 4 pounds (which

> she couldn't afford to

> lose in the beginning) and you can see the path the

> tube runs down. When she

> cries, it looks like she has a garden hose running

> down the length of her

> body. But, we have seen a complete 180 in 's

> behavior and tolerance. An

> hour after surgery, she was playing! I type this

> with tears in my eyes

> because I haven't seen my little girl smile in

> weeks. She is home tonight,

> and was greeted by some very excited siblings and

> grandparents. She seems to

> be very comfortable and happy to be home. There are

> definite risks with

> having a shunt, but they are minimal in comparison

> to the beautiful life it

> saved.

>

>

> , mommy to Meagan (CHaRgE) and 20 month

> twins, and big brother 4 years, married to

> the best daddy in the world for 9 years!

>

> [Non-text portions of this message have been

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