Double Surgery- Ben Z update

[Guest guest]

Debbie...Many hugs, many prayers your way...mom to mom

In a message dated 6/21/2007 8:38:45 P.M. Eastern Daylight Time,

jonahnolanbenjamin@... writes:

Oh boy, here we go:

Hello all-

Just got back from Ben's pre-op appointment with his NS (McComb at LA

Children's) for his surgery on June 27th (decompress brain cyst- VERY enlarged

4th

ventricle- between brain stem & cerebellum-lovely location for hydrocephalus-

cerebellum-lovely location for hydrocephalus-<WBR>sigh). After a recent

finding of bladder spasms that highly suggest neurogenic bladder (and a fatty

filum on his MRI), doc is also going to do the fatty filum snip during the

brain

surgery. Double whammy. Going to be alot for poor Ben (will have to

pre-admit him and drain his colon with go-lytely and then hook him up to TPN so

we

won't have to deal with feedings and stool that won't come out/have to irrigate

him by catheter at home so that won't work). This two things at once will

double surgery time but will also keep my son from having to recover and then

turn around and do anesthesia, etc. all over again. He has breathing troubles

(could be because of this swelling though) and problems w

stay at least 7 days (with our Ben assuming longer). They of course have to

tell you all the " surgery risks " that just basically make you want to have a

heart attack and die or run away and never come back. Surgery is on June

27th, appreciate your prayer support and post-op help. Will hopefully have my

laptop and husband with me. ) Thanks for listening. We hope for progress for

Ben in MANY areas, and at the very least, that he won't come out worse than he

went in.

Blessings,

Debbie & Ben 3 1/2 yrs. (Down Syndrome, Hydrocephalus, Hirschsprung' Ben 3

1/2 yrs. (Down Syndrome, Hydroceph

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[Guest guest]

Hey Debbie,

The risks they tell you about for these surgeries are very frightening, but just

keep your faith in the doctors and anesthesiologist team. I just had an

intrathecal pain pump implanted and to be honest, the risks they listed for me,

because of all of my previous spinal cord surgeries were the same that were

listed for the untetherings. Although you want to know the risks, I think

sometimes they go over-board for insurance purposes.

If I may make a suggestion: Not sure if you know this, but during lengthy

surgeries, anesthesia will usually " trade out " doctors at some point during the

surgery so one may eat/take a bathroom break etc. Just make certain that during

the entire procedure there will be a " doctor " of anesthesia and one that

specializes in pediatric care. Unfortunately, some hospitals will trade-out

with a nurse anestitist and although I'm sure highly qualified, I've never

allowed or given permission for one to administer or monitor me during my spinal

cord surgeries.

Good luck and please keep us posted.

Kathy

Double Surgery- Ben Z update

Oh boy, here we go:

Hello all-

Just got back from Ben's pre-op appointment with his NS (McComb at LA

Children's) for his surgery on June 27th (decompress brain cyst- VERY enlarged

4th ventricle- between brain stem & cerebellum-lovely location for

hydrocephalus-sigh). After a recent finding of bladder spasms that highly

suggest neurogenic bladder (and a fatty filum on his MRI), doc is also going to

do the fatty filum snip during the brain surgery. Double whammy. Going to be

alot for poor Ben (will have to pre-admit him and drain his colon with go-lytely

and then hook him up to TPN so we won't have to deal with feedings and stool

that won't come out/have to irrigate him by catheter at home so that won't

work). This two things at once will double surgery time but will also keep my

son from having to recover and then turn around and do anesthesia, etc. all over

again. He has breathing troubles (could be because of this swelling though) and

problems with handling meds for pain management. Hospital

stay at least 7 days (with our Ben assuming longer). They of course have to

tell you all the " surgery risks " that just basically make you want to have a

heart attack and die or run away and never come back. Surgery is on June 27th,

appreciate your prayer support and post-op help. Will hopefully have my laptop

and husband with me. ) Thanks for listening. We hope for progress for Ben in

MANY areas, and at the very least, that he won't come out worse than he went in.

Blessings,

Debbie & Ben 3 1/2 yrs. (Down Syndrome, Hydrocephalus, Hirschsprung's,fatty

filum,neurogenic bladder)

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

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[Guest guest]

Hi Debbie,

I will be praying for you and little Ben. Did you like Dr Mc Comb? I live in

Orange County and Dr. Mc Clone in Chicago recommended either Dr. Mc Comb or Dr

pour at Cedars. I am traveling to Chicago to have a consultation with Dr

Mc lone and then will follow up with Dr pour here but I just wondered how

Dr Mc Comb was?

Thanks,

Double Surgery- Ben Z update

Oh boy, here we go:

Hello all-

Just got back from Ben's pre-op appointment with his NS (McComb at LA

Children's) for his surgery on June 27th (decompress brain cyst- VERY enlarged

4th ventricle- between brain stem & cerebellum-lovely location for

hydrocephalus-sigh). After a recent finding of bladder spasms that highly

suggest neurogenic bladder (and a fatty filum on his MRI), doc is also going to

do the fatty filum snip during the brain surgery. Double whammy. Going to be

alot for poor Ben (will have to pre-admit him and drain his colon with go-lytely

and then hook him up to TPN so we won't have to deal with feedings and stool

that won't come out/have to irrigate him by catheter at home so that won't

work). This two things at once will double surgery time but will also keep my

son from having to recover and then turn around and do anesthesia, etc. all over

again. He has breathing troubles (could be because of this swelling though) and

problems with handling meds for pain management. Hospital

stay at least 7 days (with our Ben assuming longer). They of course have to

tell you all the " surgery risks " that just basically make you want to have a

heart attack and die or run away and never come back. Surgery is on June 27th,

appreciate your prayer support and post-op help. Will hopefully have my laptop

and husband with me. ) Thanks for listening. We hope for progress for Ben in

MANY areas, and at the very least, that he won't come out worse than he went in.

Blessings,

Debbie & Ben 3 1/2 yrs. (Down Syndrome, Hydrocephalus, Hirschsprung's,fatty

filum,neurogenic bladder)

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

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[Guest guest]

Good point, kathy. if his sx is going 2 b done @ a teaching hosp, many

times the md's resident will do all or or part of the sx. something i

don't allow-other than 2 assist. jenn

> Hey Debbie,

>

> The risks they tell you about for these surgeries are very frightening, but

> just keep your faith in the doctors and anesthesiologist team. I just had

> an intrathecal pain pump implanted and to be honest, the risks they listed

> for me, because of all of my previous spinal cord surgeries were the same

> that were listed for the untetherings. Although you want to know the risks,

> I think sometimes they go over-board for insurance purposes.

>

> If I may make a suggestion: Not sure if you know this, but during lengthy

> surgeries, anesthesia will usually " trade out " doctors at some point during

> the surgery so one may eat/take a bathroom break etc. Just make certain

> that during the entire procedure there will be a " doctor " of anesthesia and

> one that specializes in pediatric care. Unfortunately, some hospitals will

> trade-out with a nurse anestitist and although I'm sure highly qualified,

> I've never allowed or given permission for one to administer or monitor me

> during my spinal cord surgeries.

>

> Good luck and please keep us posted.

>

> Kathy

> Double Surgery- Ben Z update

>

>

> Oh boy, here we go:

>

> Hello all-

>

> Just got back from Ben's pre-op appointment with his NS (McComb at LA

> Children's) for his surgery on June 27th (decompress brain cyst- VERY

> enlarged 4th ventricle- between brain stem & cerebellum-lovely location for

> hydrocephalus-sigh). After a recent finding of bladder spasms that highly

> suggest neurogenic bladder (and a fatty filum on his MRI), doc is also going

> to do the fatty filum snip during the brain surgery. Double whammy. Going to

> be alot for poor Ben (will have to pre-admit him and drain his colon with

> go-lytely and then hook him up to TPN so we won't have to deal with feedings

> and stool that won't come out/have to irrigate him by catheter at home so

> that won't work). This two things at once will double surgery time but will

> also keep my son from having to recover and then turn around and do

> anesthesia, etc. all over again. He has breathing troubles (could be because

> of this swelling though) and problems with handling meds for pain

> management. Hospital

> stay at least 7 days (with our Ben assuming longer). They of course have

> to tell you all the " surgery risks " that just basically make you want to

> have a heart attack and die or run away and never come back. Surgery is on

> June 27th, appreciate your prayer support and post-op help. Will hopefully

> have my laptop and husband with me. ) Thanks for listening. We hope for

> progress for Ben in MANY areas, and at the very least, that he won't come

> out worse than he went in.

> Blessings,

> Debbie & Ben 3 1/2 yrs. (Down Syndrome, Hydrocephalus,

> Hirschsprung's,fatty filum,neurogenic bladder)

>

> ---------------------------------

> TV dinner still cooling?

> Check out " Tonight's Picks " on Yahoo! TV.

>

>