Re: Mara's Surgery

[Guest guest]

Hi Everyone,

My granddaughter Mara who is 7 yrs. old is having a major surgery this

Thursday, Aug. 21. For the last several years has to be catherized 4 to 5 times

a day (she has neurogenic bladder) and has to take lots of laxative (Miralax) to

make her bowels move. The doctors have been suggesting this surgery since she

was 5, but my daughter Ashlie, Mara's mom, has held off doing it, but it is time

and is very necessary. We know it will make things easier for Mara and Ashlie,

and also make it easier for the people at her school and her respite nurses &

will make it easier to take care of her, but it is still very scary.

I was just wondering if anyone's child has had or if anyone knows anything

about the Mitrofanoff (bladder) and M.A.C.E. (bowel) procedures. We have read

everything about both, but I always like to ask everyone on the groups

(Polymicrogyria & Microcephaly) for any advice, etc. The surgery will be 4 to 8

hours long and Mara will be in the hospital 4 to 5 days or longer perhaps. Mara

will have a place in her upper stomach where her bladder can be emptied without

having to diaper her or move her out of her wheelchair. She will have another

place in her stomach where she will have an enema every morning and no one will

have to deal with that the rest of the day.

Please pray for Mara, Ashlie & (Mara's dad) as we go through this with

Mara. I will be there with them for the surgery (Children's Mercy Hospital in

Kansas City, Missouri) but will come home that evening to care for my other

granddaughter Perrie (Mara's sister) who is 3 yrs old. It will be hard to leave

them, but we live 2 hours away and I have to be with Perrie. I will go back

Sunday when comes home to go back to work on Monday. I am rambling now,

so sorry. Please let me know if anyone knows anything.

Thanks,

[Guest guest]

Hi ... I have not heard of that surgery, although our son has a

very difficult time moving his bowels, he always has. We have to give him

miralax daily... and he always seems to be uncomfortable. Its very challenging

now that he is 10..because when he does have a BM...its explosive and huge and

it hurts him.

Keep us informed about how Mara does on the 21st. Which specialist is doing

the surgery do you know... is it Gastroenterology.. or other wise... are there

specialists who just deal with lower intestinal/bm/urinating difficulties. I am

very interested in more research.

My thoughts are with you... one of the most important things we have to

remember about these kids is that giving them the best quality of life is the

most important thing we can do. can not eat via mouth..at all... and

probably never again... because a few years back his swallowing digressed and he

started aspirating dangerously pretty much everything. They told me that he

would be happier when we stopped feeding him orally...and although I was

upset... they were right. He was not congested, stopped having choking fits,

and started gaining more weight (he is still too skinny)..

But the pooping thing is a terrible difficulty for him...and I suspect much of

his daily crying is due to cramping.

Best of luck to you...and your granddaughter. AGAIN...another involved

grandmother...I wish I had that in my family. Sincerely, Mom to

(age 10) Bilateral diffuse PMG 80%... non verbal, g tube fed, seizures,

fundoplication, severe reflux, hip surgeries, and more....

& Boise wrote:

Hi Everyone,

My granddaughter Mara who is 7 yrs. old is having a major surgery this Thursday,

Aug. 21. For the last several years has to be catherized 4 to 5 times a day (she

has neurogenic bladder) and has to take lots of laxative (Miralax) to make her

bowels move. The doctors have been suggesting this surgery since she was 5, but

my daughter Ashlie, Mara's mom, has held off doing it, but it is time and is

very necessary. We know it will make things easier for Mara and Ashlie, and also

make it easier for the people at her school and her respite nurses & will make

it easier to take care of her, but it is still very scary.

I was just wondering if anyone's child has had or if anyone knows anything about

the Mitrofanoff (bladder) and M.A.C.E. (bowel) procedures. We have read

everything about both, but I always like to ask everyone on the groups

(Polymicrogyria & Microcephaly) for any advice, etc. The surgery will be 4 to 8

hours long and Mara will be in the hospital 4 to 5 days or longer perhaps. Mara

will have a place in her upper stomach where her bladder can be emptied without

having to diaper her or move her out of her wheelchair. She will have another

place in her stomach where she will have an enema every morning and no one will

have to deal with that the rest of the day.

Please pray for Mara, Ashlie & (Mara's dad) as we go through this with

Mara. I will be there with them for the surgery (Children's Mercy Hospital in

Kansas City, Missouri) but will come home that evening to care for my other

granddaughter Perrie (Mara's sister) who is 3 yrs old. It will be hard to leave

them, but we live 2 hours away and I have to be with Perrie. I will go back

Sunday when comes home to go back to work on Monday. I am rambling now, so

sorry. Please let me know if anyone knows anything.

Thanks,

[Guest guest]

:

I'm sorry to say I'm not familar with either of the surgeries that Mara will

have.  Mara and is so fortunate to have such a caring and wonderful grandmother

in her life.  I wish the best for Mara.  I will be thinking and praying for Mara

and your family.  Hope all goes well.  Keep us informed.

Blessings to you and yours,

Bonnie (grandmother to Lindsey, 6 years old with PMG/microcephley) 

Bonnie

Subject: Re: Mara's Surgery

To: polymicrogyria , microcephaly

Date: Sunday, August 17, 2008, 5:41 PM

Hi Everyone,

My granddaughter Mara who is 7 yrs. old is having a major surgery this Thursday,

Aug. 21. For the last several years has to be catherized 4 to 5 times a day (she

has neurogenic bladder) and has to take lots of laxative (Miralax) to make her

bowels move. The doctors have been suggesting this surgery since she was 5, but

my daughter Ashlie, Mara's mom, has held off doing it, but it is time and is

very necessary. We know it will make things easier for Mara and Ashlie, and also

make it easier for the people at her school and her respite nurses & will make

it easier to take care of her, but it is still very scary.

I was just wondering if anyone's child has had or if anyone knows anything about

the Mitrofanoff (bladder) and M.A.C.E. (bowel) procedures. We have read

everything about both, but I always like to ask everyone on the groups

(Polymicrogyria & Microcephaly) for any advice, etc. The surgery will be 4 to 8

hours long and Mara will be in the hospital 4 to 5 days or longer perhaps. Mara

will have a place in her upper stomach where her bladder can be emptied without

having to diaper her or move her out of her wheelchair. She will have another

place in her stomach where she will have an enema every morning and no one will

have to deal with that the rest of the day.

Please pray for Mara, Ashlie & (Mara's dad) as we go through this with

Mara. I will be there with them for the surgery (Children's Mercy Hospital in

Kansas City, Missouri) but will come home that evening to care for my other

granddaughter Perrie (Mara's sister) who is 3 yrs old. It will be hard to leave

them, but we live 2 hours away and I have to be with Perrie. I will go back

Sunday when comes home to go back to work on Monday. I am rambling now, so

sorry. Please let me know if anyone knows anything.

Thanks,

[Guest guest]

Thanks for writing back . Mara's surgery will be done by Dr. Gatti, who is

a urologist specializing in spina bifida, spinal cord injuries, etc. He has

done quite a few of these surgeries and we feel " fair " about that. Mara is tube

fed as well and we had the same experience with the doctors....they encouraged

Ashlie to go ahead with the surgery for a g-tube and EVERYONE was happier. It

had become such a struggle to get Mara to eat. She will never eat by mouth

again either, I am sure. The " pooping " thing has always been a struggle for

Mara too. She has the same experience as and if she doesn't have a bm,

she cries and has to have an enema, so Ashlie tries with the Miralax to keep it

soft, but most of you have experienced this.....even tho' you give the exact

same dosage, it is different everyday. Some days it's explosive and other days

you wait in anticipation for the happening!! :{

I will keep you informed about the outcome so that other who may experience this

later may have the information.

Thanks , and blessing to you, and your family.

[Guest guest]

Hi Bonnie,

I haven't heard from you in quite a while....good to hear from you again.

Thanks for the encouraging words, I really appreciate it. Thanks for the

prayers, God is Good!

How is Lindsey? I hope she is doing well. God bless.

[Guest guest]

Thanks for the information. is on Neocate formula since he was put on

exclusive g tube feeds...and the neocate makes the stools really liquidy... its

awful, because he still gets constipated and has pain. I am just wondering

how Ashlie got to the point of seeking out a urologist for this, because the GI

doctors basically stop at the " give them miralax or an enema " they don't

really examine the fact that internally something may not be working

appropriately in the... how do I put it.. " pooping area " ... lol.

Can you tell me again what the name of the procedure is? I want to bring it up

at our next meeting... just to gather information.

Best wishes.

& Boise wrote:

Thanks for writing back . Mara's surgery will be done by Dr.

Gatti, who is a urologist specializing in spina bifida, spinal cord injuries,

etc. He has done quite a few of these surgeries and we feel " fair " about that.

Mara is tube fed as well and we had the same experience with the doctors....they

encouraged Ashlie to go ahead with the surgery for a g-tube and EVERYONE was

happier. It had become such a struggle to get Mara to eat. She will never eat by

mouth again either, I am sure. The " pooping " thing has always been a struggle

for Mara too. She has the same experience as and if she doesn't have a

bm, she cries and has to have an enema, so Ashlie tries with the Miralax to keep

it soft, but most of you have experienced this.....even tho' you give the exact

same dosage, it is different everyday. Some days it's explosive and other days

you wait in anticipation for the happening!! :{

I will keep you informed about the outcome so that other who may experience this

later may have the information.

Thanks , and blessing to you, and your family.

[Guest guest]

Hi .

I have also not heard of either surgery, but I am a nurse and from

what you describe, it sounds an awful lot like she will have a

urostomy and a colostomy at the end of this surgery. Or instead of the

urostomy, which I have rarely seen done in recent years, maybe they

will insert a suprapubic tube(a far more common procedure for

neurogenic bladder).

If an SP tube is the case, care will be simple, it's just a small hole

in the lower abdomen in which an indwelling catheter will be placed

and connected to a drainage bag. For care of the site you just wipe

with normal saline daily and you can use a little zinc around the area

if it gets reddened, and the catheter should be changed every 4-6 weeks.

The colostomy may also be called an ileostomy or a jejunostomy

depending on where in the colon the stoma(opening) is placed. That

will require an appliance to be worn around the site, but it is also

easy to care for. The appliance is a 2 piece deal, the first piece is

called a flange and it is a heavy adhesive with a pre-cut or you cut

to fit hole for the stoma(the opening of the colon that will now be

outside the body). The upside has a plastic circle which attaches the

second piece of the appliance which is a plastic bag with an

interlocking circular piece of plastic. There is also a clip for bag

closure at the bottom. And that's it, the bag gets changed daily and

as needed and the flange every 3 days or if soiled. Same care, just

wipe with normal saline and let dry. There is also a skin prep that

helps the adhesive stick better that some people use, but its just a

wipe on thing too.

Anyway, hope that helps or if her surgery is something all together

different, then I apologize for wasting your time.

Thoughts and prayers are with you all!

Sue

Mom to Meghan(12) and (7)BFPP, microcephaly, moderate spastic quad CP

>

> Hi Everyone,

> My granddaughter Mara who is 7 yrs. old is having a major surgery

this Thursday, Aug. 21. For the last several years has to be

catherized 4 to 5 times a day (she has neurogenic bladder) and has to

take lots of laxative (Miralax) to make her bowels move. The doctors

have been suggesting this surgery since she was 5, but my daughter

Ashlie, Mara's mom, has held off doing it, but it is time and is very

necessary. We know it will make things easier for Mara and Ashlie,

and also make it easier for the people at her school and her respite

nurses & will make it easier to take care of her, but it is still very

scary.

> I was just wondering if anyone's child has had or if anyone knows

anything about the Mitrofanoff (bladder) and M.A.C.E. (bowel)

procedures. We have read everything about both, but I always like to

ask everyone on the groups (Polymicrogyria & Microcephaly) for any

advice, etc. The surgery will be 4 to 8 hours long and Mara will be in

the hospital 4 to 5 days or longer perhaps. Mara will have a place in

her upper stomach where her bladder can be emptied without having to

diaper her or move her out of her wheelchair. She will have another

place in her stomach where she will have an enema every morning and no

one will have to deal with that the rest of the day.

> Please pray for Mara, Ashlie & (Mara's dad) as we go through

this with Mara. I will be there with them for the surgery (Children's

Mercy Hospital in Kansas City, Missouri) but will come home that

evening to care for my other granddaughter Perrie (Mara's sister) who

is 3 yrs old. It will be hard to leave them, but we live 2 hours away

and I have to be with Perrie. I will go back Sunday when comes

home to go back to work on Monday. I am rambling now, so sorry.

Please let me know if anyone knows anything.

> Thanks,

>

>

>

[Guest guest]

:

Lindsey is doing fine.  Thanks for asking.  She is 6 years old now.  Time

flies!  We are dealing with this seizure thing.  She's had one last week which

was her first one.  At least that we were really sure about.  She's doing well

since then though.  It's the adults that are nervous wrecks.  Especially me

(Noni).  I hope I will be able to hold it together if this happens on a day I

babysit which is tomorrow.  The other grandma is there today and I understand

things are fine as of now.  The seizure thing is  just something all new we have

to accept and learn how to deal with.  I don't doubt we'll do the best we can. 

My daughter asked me what I would have done if I were there with her last week. 

I told her I would have just cuddled her and called 911.  I wouldn't have known

to lay her on her side on the floor and keep her airway open.  I'm getting an

education that I never expected!  My daughter will be making an

appointment

this week with the neurologist in Chicago.  My grandmotherly duties have sure

expanded with Lindsey.  I'm grateful though  that both my daughter's in-laws as

well as my husband and I are able to each give them one day of babysitting. 

Lindsey started a special-ed class last week but she won't be going back until

Lindsey is

seen by the neurologist.  Anyway, that's about it.  I will keep your Myra

and all the other kiddos in my prayers.  Good luck with the surgeries and keep

us all posted about her progress.

Blessings,

Bonnie (grandmother to Lindsey W/PMG/microsephley)

Subject: Re: Mara's Surgery

To: polymicrogyria

Date: Monday, August 18, 2008, 9:38 AM

Hi Bonnie,

I haven't heard from you in quite a while....good to hear from you again. Thanks

for the encouraging words, I really appreciate it. Thanks for the prayers, God

is Good!

How is Lindsey? I hope she is doing well. God bless.

[Guest guest]

Hi,

I was wondering if you have thought to give her just plain old paraffin oil

( I buy it at the supermarket.) with the rest of the stuff you give her.

I am supposing it will go down the tube.

I give Kym 40 ml every day by mouth. It puts a lining on the column (sp)

and just could make it a little easier.

Just a little thought which might or might not help.

Janice

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of & Boise

Sent: Monday, 18 August 2008 9:37 PM

To: polymicrogyria

Subject: Re: Mara's Surgery

Thanks for writing back . Mara's surgery will be done by Dr. Gatti, who

is a urologist specializing in spina bifida, spinal cord injuries, etc. He

has done quite a few of these surgeries and we feel " fair " about that. Mara

is tube fed as well and we had the same experience with the doctors....they

encouraged Ashlie to go ahead with the surgery for a g-tube and EVERYONE was

happier. It had become such a struggle to get Mara to eat. She will never

eat by mouth again either, I am sure. The " pooping " thing has always been a

struggle for Mara too. She has the same experience as and if she

doesn't have a bm, she cries and has to have an enema, so Ashlie tries with

the Miralax to keep it soft, but most of you have experienced this.....even

tho' you give the exact same dosage, it is different everyday. Some days

it's explosive and other days you wait in anticipation for the happening!!

:{

I will keep you informed about the outcome so that other who may experience

this later may have the information.

Thanks , and blessing to you, and your family.

[Guest guest]

, just a thought, chloe also used to have difficulties, but since being

prescribed Movicol, she not had a single problem. She takes 1 sachet every other

day, just disovled in her first drink of water in the mornining. Is this a

medicine yoy have tried?

Dom

Re: Re: Mara's Surgery

Hi ... I have not heard of that surgery, although our son has a

very difficult time moving his bowels, he always has. We have to give him

miralax daily... and he always seems to be uncomfortable. Its very challenging

now that he is 10..because when he does have a BM...its explosive and huge and

it hurts him.

Keep us informed about how Mara does on the 21st. Which specialist is doing

the surgery do you know... is it Gastroenterology.. or other wise... are there

specialists who just deal with lower intestinal/bm/urinating difficulties. I am

very interested in more research.

My thoughts are with you... one of the most important things we have to

remember about these kids is that giving them the best quality of life is the

most important thing we can do. can not eat via mouth..at all... and

probably never again... because a few years back his swallowing digressed and he

started aspirating dangerously pretty much everything. They told me that he

would be happier when we stopped feeding him orally...and although I was

upset... they were right. He was not congested, stopped having choking fits, and

started gaining more weight (he is still too skinny)..

But the pooping thing is a terrible difficulty for him...and I suspect much of

his daily crying is due to cramping.

Best of luck to you...and your granddaughter. AGAIN...another involved

grandmother...I wish I had that in my family. Sincerely, Mom to

(age 10) Bilateral diffuse PMG 80%... non verbal, g tube fed, seizures,

fundoplication, severe reflux, hip surgeries, and more....

& Boise wrote:

Hi Everyone,

My granddaughter Mara who is 7 yrs. old is having a major surgery this

Thursday, Aug. 21. For the last several years has to be catherized 4 to 5 times

a day (she has neurogenic bladder) and has to take lots of laxative (Miralax) to

make her bowels move. The doctors have been suggesting this surgery since she

was 5, but my daughter Ashlie, Mara's mom, has held off doing it, but it is time

and is very necessary. We know it will make things easier for Mara and Ashlie,

and also make it easier for the people at her school and her respite nurses &

will make it easier to take care of her, but it is still very scary.

I was just wondering if anyone's child has had or if anyone knows anything

about the Mitrofanoff (bladder) and M.A.C.E. (bowel) procedures. We have read

everything about both, but I always like to ask everyone on the groups

(Polymicrogyria & Microcephaly) for any advice, etc. The surgery will be 4 to 8

hours long and Mara will be in the hospital 4 to 5 days or longer perhaps. Mara

will have a place in her upper stomach where her bladder can be emptied without

having to diaper her or move her out of her wheelchair. She will have another

place in her stomach where she will have an enema every morning and no one will

have to deal with that the rest of the day.

Please pray for Mara, Ashlie & (Mara's dad) as we go through this with

Mara. I will be there with them for the surgery (Children's Mercy Hospital in

Kansas City, Missouri) but will come home that evening to care for my other

granddaughter Perrie (Mara's sister) who is 3 yrs old. It will be hard to leave

them, but we live 2 hours away and I have to be with Perrie. I will go back

Sunday when comes home to go back to work on Monday. I am rambling now, so

sorry. Please let me know if anyone knows anything.

Thanks,

[Guest guest]

Hi ,

The procedure are Mitrofanoff (bladder) and M.A.C.E. (bowel). The urologist

has wanted to do these since Mara was about 5 years old. She had so much

trouble with bladder infections with the neurogenic bladder, and so had to start

cathing her every 4 hours. Now that she is older and harder to pick up, move

around, etc., this procedure is so necessary for her comfort. These procedures

are so necessary to keep Mara from having bladder infections. When she poops in

the diaper, it is easier for the bacteria to travel up the urethra & into the

bladder, thus causing an infection. This will still be possible after the

surgery, but less likely. She will have her bowel movement on the potty

(hopefully), then be done with that issue for the rest of the day. The cathing

will be easier also since it can be done with her sitting in her wheelchair, and

the possibility of introducing bacteria her in this area is less likely than

below. I hope I am answering your question and making sense. Mara's urologist

deals with a lot of spina bifida and spinal cord injury children. I think that

basically Mara's situation is similar, but the area of the brain that controls

these functions is not sending the messages to the lower body. Same situation

with spinal injury, etc. I thing these procedures are basically like a urostomy

and a colostomy, but without the external bags after surgery??

I will let you know if I get any other info. . Hope you and are

well.

Thanks,

P.S. Mara is on g-tube feedings and she gets Pediasure. Ashlie tried the

formula with fiber, but it gave Mara such terrible stomach aches, she switched

back. Now she just uses Miralax.

[Guest guest]

I have not heard of Movicol...but will discuss when I speak with GI next week...

we have an appointment. Thanks.. It's kind of ironic, because JUST

had an enormous BM and it went all over him, his chair, the floor, me..and it is

what we call here.. THE MEGA POOP.

Such is life... Thanks...

Chloe B wrote:

, just a thought, chloe also used to have difficulties, but since

being prescribed Movicol, she not had a single problem. She takes 1 sachet every

other day, just disovled in her first drink of water in the mornining. Is this a

medicine yoy have tried?

Dom

Re: Re: Mara's Surgery

Hi ... I have not heard of that surgery, although our son has a very

difficult time moving his bowels, he always has. We have to give him miralax

daily... and he always seems to be uncomfortable. Its very challenging now that

he is 10..because when he does have a BM...its explosive and huge and it hurts

him.

Keep us informed about how Mara does on the 21st. Which specialist is doing the

surgery do you know... is it Gastroenterology.. or other wise... are there

specialists who just deal with lower intestinal/bm/urinating difficulties. I am

very interested in more research.

My thoughts are with you... one of the most important things we have to remember

about these kids is that giving them the best quality of life is the most

important thing we can do. can not eat via mouth..at all... and probably

never again... because a few years back his swallowing digressed and he started

aspirating dangerously pretty much everything. They told me that he would be

happier when we stopped feeding him orally...and although I was upset... they

were right. He was not congested, stopped having choking fits, and started

gaining more weight (he is still too skinny)..

But the pooping thing is a terrible difficulty for him...and I suspect much of

his daily crying is due to cramping.

Best of luck to you...and your granddaughter. AGAIN...another involved

grandmother...I wish I had that in my family. Sincerely, Mom to

(age 10) Bilateral diffuse PMG 80%... non verbal, g tube fed, seizures,

fundoplication, severe reflux, hip surgeries, and more....

& Boise wrote:

Hi Everyone,

My granddaughter Mara who is 7 yrs. old is having a major surgery this Thursday,

Aug. 21. For the last several years has to be catherized 4 to 5 times a day (she

has neurogenic bladder) and has to take lots of laxative (Miralax) to make her

bowels move. The doctors have been suggesting this surgery since she was 5, but

my daughter Ashlie, Mara's mom, has held off doing it, but it is time and is

very necessary. We know it will make things easier for Mara and Ashlie, and also

make it easier for the people at her school and her respite nurses & will make

it easier to take care of her, but it is still very scary.

I was just wondering if anyone's child has had or if anyone knows anything about

the Mitrofanoff (bladder) and M.A.C.E. (bowel) procedures. We have read

everything about both, but I always like to ask everyone on the groups

(Polymicrogyria & Microcephaly) for any advice, etc. The surgery will be 4 to 8

hours long and Mara will be in the hospital 4 to 5 days or longer perhaps. Mara

will have a place in her upper stomach where her bladder can be emptied without

having to diaper her or move her out of her wheelchair. She will have another

place in her stomach where she will have an enema every morning and no one will

have to deal with that the rest of the day.

Please pray for Mara, Ashlie & (Mara's dad) as we go through this with

Mara. I will be there with them for the surgery (Children's Mercy Hospital in

Kansas City, Missouri) but will come home that evening to care for my other

granddaughter Perrie (Mara's sister) who is 3 yrs old. It will be hard to leave

them, but we live 2 hours away and I have to be with Perrie. I will go back

Sunday when comes home to go back to work on Monday. I am rambling now, so

sorry. Please let me know if anyone knows anything.

Thanks,

[Guest guest]

Hi Sue,

You certainly are not wasting my time. Thanks so much for all the info. I

had come to the conclusion yesterday that these surgeries were similar to a

colostomy and urostomy, but without the bags. Your information is right also.

She will come home with some tubes, but eventually she will be cathed from a

stoma several times a day and will have an enema from a stoma once a day.

Thanks for the thoughts and prayers and for taking the time to help. I will

let you know how everything turns out.

Thanks,

[Guest guest]

Hi ,

Kym has also been on and still is on Movicole sachates. She get 1 per day.

What it does is it take water out of the body and puts it into the bowels so

that the movement is soft.

We did for 3 weeks give Kym 2 per day and it worked a treat. The only

problem was it took the electrolytes

out of her body so we had to give her Gatorade for a few days and we have

gone back to 1 per day.

Regards,

janice

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of JULIE HASSELBERGER

Sent: Wednesday, 20 August 2008 7:30 AM

To: polymicrogyria

Subject: Re: Re: Mara's Surgery

I have not heard of Movicol...but will discuss when I speak with GI next

week... we have an appointment. Thanks.. It's kind of ironic, because

JUST had an enormous BM and it went all over him, his chair, the floor,

me..and it is what we call here.. THE MEGA POOP.

Such is life... Thanks...

Chloe B <b_chlo@... <mailto:b_chlo%40netnub.co.uk> > wrote:

, just a thought, chloe also used to have difficulties, but since being

prescribed Movicol, she not had a single problem. She takes 1 sachet every

other day, just disovled in her first drink of water in the mornining. Is

this a medicine yoy have tried?

Dom

Re: Re: Mara's Surgery

Hi ... I have not heard of that surgery, although our son has a

very difficult time moving his bowels, he always has. We have to give him

miralax daily... and he always seems to be uncomfortable. Its very

challenging now that he is 10..because when he does have a BM...its

explosive and huge and it hurts him.

Keep us informed about how Mara does on the 21st. Which specialist is doing

the surgery do you know... is it Gastroenterology.. or other wise... are

there specialists who just deal with lower intestinal/bm/urinating

difficulties. I am very interested in more research.

My thoughts are with you... one of the most important things we have to

remember about these kids is that giving them the best quality of life is

the most important thing we can do. can not eat via mouth..at all...

and probably never again... because a few years back his swallowing

digressed and he started aspirating dangerously pretty much everything. They

told me that he would be happier when we stopped feeding him orally...and

although I was upset... they were right. He was not congested, stopped

having choking fits, and started gaining more weight (he is still too

skinny)..

But the pooping thing is a terrible difficulty for him...and I suspect much

of his daily crying is due to cramping.

Best of luck to you...and your granddaughter. AGAIN...another involved

grandmother...I wish I had that in my family. Sincerely, Mom to

(age 10) Bilateral diffuse PMG 80%... non verbal, g tube fed, seizures,

fundoplication, severe reflux, hip surgeries, and more....

& Boise <jboise1@... <mailto:jboise1%40embarqmail.com>

> wrote:

Hi Everyone,

My granddaughter Mara who is 7 yrs. old is having a major surgery this

Thursday, Aug. 21. For the last several years has to be catherized 4 to 5

times a day (she has neurogenic bladder) and has to take lots of laxative

(Miralax) to make her bowels move. The doctors have been suggesting this

surgery since she was 5, but my daughter Ashlie, Mara's mom, has held off

doing it, but it is time and is very necessary. We know it will make things

easier for Mara and Ashlie, and also make it easier for the people at her

school and her respite nurses & will make it easier to take care of her, but

it is still very scary.

I was just wondering if anyone's child has had or if anyone knows anything

about the Mitrofanoff (bladder) and M.A.C.E. (bowel) procedures. We have

read everything about both, but I always like to ask everyone on the groups

(Polymicrogyria & Microcephaly) for any advice, etc. The surgery will be 4

to 8 hours long and Mara will be in the hospital 4 to 5 days or longer

perhaps. Mara will have a place in her upper stomach where her bladder can

be emptied without having to diaper her or move her out of her wheelchair.

She will have another place in her stomach where she will have an enema

every morning and no one will have to deal with that the rest of the day.

Please pray for Mara, Ashlie & (Mara's dad) as we go through this with

Mara. I will be there with them for the surgery (Children's Mercy Hospital

in Kansas City, Missouri) but will come home that evening to care for my

other granddaughter Perrie (Mara's sister) who is 3 yrs old. It will be hard

to leave them, but we live 2 hours away and I have to be with Perrie. I will

go back Sunday when comes home to go back to work on Monday. I am

rambling now, so sorry. Please let me know if anyone knows anything.

Thanks,

[Guest guest]

Hi Bonnie,

Bless your heart!! I know the helpless feeling. I have been there. It is so

scary when they have a seizure and I don't know if we ever really get to where

we are " comfortable " with it. I have been around shortly after Mara has had

seizures, but never really seen them. The aftermath is enough for me, when she

is worn out and kind of disoriented. Oh dear God, if we could only take this

from these children and bear it all ourselves. Bonnie, Lindsey will be alright.

She has your wonderful family taking care of her. The seizure meds really help

and hopefully she won't have any more. I will keep Lindsey in my prayers and

thanks for the prayers for Mara. I will let you know about the surgery. Nice

to hear from you Bonnie.

[Guest guest]

Thanks for the advise. I don't think Ashlie has ever given her that before, but

I will ask her about it. We will also check it out with her surgeon and see if

it will help after the surgery.

Thanks,

[Guest guest]

The full name is: MOVICOL Peadiatric Plain 6.9g sachet

It has worked wonders with Chloe, we have not had to use a Microlax or use

Lactulose for the 6 months or so we have been using Movicol. We started at 1

sachet per day but have now slowly decreased it to suit the BMs

Dom

Re: Re: Mara's Surgery

Hi ... I have not heard of that surgery, although our son has a

very difficult time moving his bowels, he always has. We have to give him

miralax daily... and he always seems to be uncomfortable. Its very challenging

now that he is 10..because when he does have a BM...its explosive and huge and

it hurts him.

Keep us informed about how Mara does on the 21st. Which specialist is doing

the surgery do you know... is it Gastroenterology.. or other wise... are there

specialists who just deal with lower intestinal/bm/urinating difficulties. I am

very interested in more research.

My thoughts are with you... one of the most important things we have to

remember about these kids is that giving them the best quality of life is the

most important thing we can do. can not eat via mouth..at all... and

probably never again... because a few years back his swallowing digressed and he

started aspirating dangerously pretty much everything. They told me that he

would be happier when we stopped feeding him orally...and although I was

upset... they were right. He was not congested, stopped having choking fits, and

started gaining more weight (he is still too skinny)..

But the pooping thing is a terrible difficulty for him...and I suspect much of

his daily crying is due to cramping.

Best of luck to you...and your granddaughter. AGAIN...another involved

grandmother...I wish I had that in my family. Sincerely, Mom to

(age 10) Bilateral diffuse PMG 80%... non verbal, g tube fed, seizures,

fundoplication, severe reflux, hip surgeries, and more....

& Boise wrote:

Hi Everyone,

My granddaughter Mara who is 7 yrs. old is having a major surgery this

Thursday, Aug. 21. For the last several years has to be catherized 4 to 5 times

a day (she has neurogenic bladder) and has to take lots of laxative (Miralax) to

make her bowels move. The doctors have been suggesting this surgery since she

was 5, but my daughter Ashlie, Mara's mom, has held off doing it, but it is time

and is very necessary. We know it will make things easier for Mara and Ashlie,

and also make it easier for the people at her school and her respite nurses &

will make it easier to take care of her, but it is still very scary.

I was just wondering if anyone's child has had or if anyone knows anything

about the Mitrofanoff (bladder) and M.A.C.E. (bowel) procedures. We have read

everything about both, but I always like to ask everyone on the groups

(Polymicrogyria & Microcephaly) for any advice, etc. The surgery will be 4 to 8

hours long and Mara will be in the hospital 4 to 5 days or longer perhaps. Mara

will have a place in her upper stomach where her bladder can be emptied without

having to diaper her or move her out of her wheelchair. She will have another

place in her stomach where she will have an enema every morning and no one will

have to deal with that the rest of the day.

Please pray for Mara, Ashlie & (Mara's dad) as we go through this with

Mara. I will be there with them for the surgery (Children's Mercy Hospital in

Kansas City, Missouri) but will come home that evening to care for my other

granddaughter Perrie (Mara's sister) who is 3 yrs old. It will be hard to leave

them, but we live 2 hours away and I have to be with Perrie. I will go back

Sunday when comes home to go back to work on Monday. I am rambling now, so

sorry. Please let me know if anyone knows anything.

Thanks,

[Guest guest]

Hi ,

Thanks so much for asking. I was going to write the groups today and let

everyone know since everyone was so helpful and offered info. and prayers!

Thanks again for getting me the info. and emails from the other group.

That was so helpful to Ashlie and me.

Mara has done tremendously well throughout the whole ordeal!! When

the surgeon came in before surgery on the day of surgery and looked at Mara's

chart, he said he had decided not to do the Bladder Augmentation, only the

Mitrofanoff and M.A.C.E. He said the Bladder Aug. was the more serious of the 3

procedures and that she really did not need that right now & maybe never.

Hallelujah, thank you Jesus, and answer to prayer early on!! So Mara was in

surgery for 4 1/2 hours and was in recovery 1 1/2 hours. She was not screaming

and crying when we first got to see her (on most every other surgery (ear tubes

twice & removal of same twice & placement of g-tube) she was crying and

screaming when we got to her). They were able to place an epidural during the

surgery, so she would not feel the pain when she awakened. She did not have to

have morphine at all, only some hydrocodone w/ Tylenol. Everything went really

well and she never cried a tear through the whole stay in the hospital. The

surgeries were a success! They used her appendix for both the Mitrofanoff and

the M.A.C.E. She now has a little place in the bellybutton where she will be

able to be catherized 4 or 5 times a day while sitting in her wheelchair. She

has a stoma on her right side which will be used to give her an enema in the

morning, which will eliminate the need for worrying about that all the rest of

the day. She will have some sort of dignity at school now and will not have to

sit in a dirty diaper on the bus until she gets home or to school. Mara came

home from the hospital yesterday (Sunday) afternoon. She was tolerating

Pedialite and Pediasure well and was not in pain. The trip from the hosp. is 2

hours and she did well, but last night she had a crying spell. Ashlie is not

sure, but thought it may have been seizure-related from being over tired. Mara

has crying seizures. She gave her pain med. etc. just in case, and she slept

well and has done well since.

Thank you for all your help and thanks to everyone on the Microcephaly

and the Polymicrogyria loops who offered their support, prayers and comments. I

have been on these email loops since Mara was born and I don't know what I'd

have done without the support. God bless you all. , God bless you for all

the work you do helping others. You are a world of information and we are

fortunate to have you here.

Boise, Grandmother to Mara (7yrs. old, with Microcephaly, Polymicrogyria

(BPPH), seizures, g-tube, etc.

,

How did the surgery go? How's Mara doing?

Wolf, MS Ed. _The Wolf Family Homepage_

(http://hometown.aol.com/cwolfpack3/myhomepage/faith.html)

widowed mom to the " Pack " :

Tim (15 - Bipolar, Asperger's, and Anxiety disorders, dysgraphia, and ADHD),

(13 - microcephaly with DWV, mild MR, hypotonia, autism, anxiety

disorder, severe food allergies, & ADHD),

(10 - micro, mild MR, scoliosis, asthma, vision impairment, anxiety,

and ADHD)