Duke Surgery Monday - tips? & blog

[Guest guest]

Hi! My 10 month old daughter will be turning 11 months old Sunday and arriving

at Duke Childrens Hospital Monday morning for her TCS surgery. She has the

lipomyelomeningocele and the fatty filum tethers. Dr. Fuchs is her neurosurgeon.

We have been told she'll be in the hospital, mostly laying flat 6-7 days. I'm

just curious if anyone has any last minute advice for us on things to bring,

questions to ask, etc.

Also, I've started a blog about our journey if anyone is interested. I am brand

new at blogging and will work on updates as we go. I've just started it. It is:

babycoller.blogspot.com and I felt it would be good to do for our friends and

families as well as other families wanting to learn more about the process.

Thanks!

Martha

[Guest guest]

She's absolutely adorable Martha! Good luck with the surgery.

Kathy

Duke Surgery Monday - tips? & blog

Hi! My 10 month old daughter will be turning 11 months old Sunday and arriving

at Duke Childrens Hospital Monday morning for her TCS surgery. She has the

lipomyelomeningocele and the fatty filum tethers. Dr. Fuchs is her neurosurgeon.

We have been told she'll be in the hospital, mostly laying flat 6-7 days. I'm

just curious if anyone has any last minute advice for us on things to bring,

questions to ask, etc.

Also, I've started a blog about our journey if anyone is interested. I am

brand new at blogging and will work on updates as we go. I've just started it.

It is: babycoller.blogspot.com and I felt it would be good to do for our friends

and families as well as other families wanting to learn more about the process.

Thanks!

Martha

[Guest guest]

Martha,

You live about 45 minutes west of me! One of our daughter's lives in Brown

Summit (sp). I've been anxious to be up and running to get to the new outlet in

Mebane.

Kathy

Duke Surgery Monday - tips? & blog

Hi! My 10 month old daughter will be turning 11 months old Sunday and arriving

at Duke Childrens Hospital Monday morning for her TCS surgery. She has the

lipomyelomeningocele and the fatty filum tethers. Dr. Fuchs is her neurosurgeon.

We have been told she'll be in the hospital, mostly laying flat 6-7 days. I'm

just curious if anyone has any last minute advice for us on things to bring,

questions to ask, etc.

Also, I've started a blog about our journey if anyone is interested. I am

brand new at blogging and will work on updates as we go. I've just started it.

It is: babycoller.blogspot.com and I felt it would be good to do for our friends

and families as well as other families wanting to learn more about the process.

Thanks!

Martha

[Guest guest]

Martha,

28 years ago my daughter had her first TSC release surgery at Duke.  Dr. Fuch's

was there, but not her surgeon.  In the the years and surgeries since, we have

not had him as our actual surgeon, but have seen and spoken with him on several

occasions during the hospital stays. He is a wonderful surgeon, and has the best

bedside manner.  You will probably see Dr. Grant while you are there.  He has

done Beth's last 3 surgeries.  We love them both.  You are in good hands. 

Much luck to you all!

Livvie

Subject: Duke Surgery Monday - tips? & blog

To: tetheredspinalcord

Date: Wednesday, April 13, 2011, 3:23 PM

 

Hi! My 10 month old daughter will be turning 11 months old Sunday and

arriving at Duke Childrens Hospital Monday morning for her TCS surgery. She has

the lipomyelomeningocele and the fatty filum tethers. Dr. Fuchs is her

neurosurgeon. We have been told she'll be in the hospital, mostly laying flat

6-7 days. I'm just curious if anyone has any last minute advice for us on things

to bring, questions to ask, etc.

Also, I've started a blog about our journey if anyone is interested. I am brand

new at blogging and will work on updates as we go. I've just started it. It is:

babycoller.blogspot.com and I felt it would be good to do for our friends and

families as well as other families wanting to learn more about the process.

Thanks!

Martha

[Guest guest]

Hi Martha,

I think I forgot to send my last email, so I will do this again. The best thing

you can do is make sure the staff is doing all that is needed for your child.

The hospital and staff can make all the difference with a person's recovery. I

have had two detetherings and the first hospital experience was awful, they

didn't listen to my needs, they were rude, and refused to get me up and moving.

The second the nurses and staff were so nice, listened to what I needed, and

made sure all orders were followed exactly as the doctor ordered (this one was

at a different hospital).

I also have a blog that I update about my experiences and the recovery process.

http://beegeelover.blogspot.com/

It is about my journey with Spina bifida and TCS. Always remember ask alot of

questions, write them down ahead of time as you have a tendency to forget them.

I will visit your blog and keep track of your child's progress.

To: tetheredspinalcord

From: hollandmeh@...

Date: Wed, 13 Apr 2011 19:23:30 +0000

Subject: Duke Surgery Monday - tips? & blog

Hi! My 10 month old daughter will be turning 11 months old Sunday and

arriving at Duke Childrens Hospital Monday morning for her TCS surgery. She has

the lipomyelomeningocele and the fatty filum tethers. Dr. Fuchs is her

neurosurgeon. We have been told she'll be in the hospital, mostly laying flat

6-7 days. I'm just curious if anyone has any last minute advice for us on things

to bring, questions to ask, etc.

Also, I've started a blog about our journey if anyone is interested. I am brand

new at blogging and will work on updates as we go. I've just started it. It is:

babycoller.blogspot.com and I felt it would be good to do for our friends and

families as well as other families wanting to learn more about the process.

Thanks!

Martha

[Guest guest]

I had two of three tsc surgeries at Duke,, I actually live 3 miles from Duke!!

Duke is wonderful, and you are in wonderful hands!! Dr. Fuchs is the very very

best!!!!! Your family will be in my prayers

e

________________________________

To: tetheredspinalcord

Sent: Thu, April 14, 2011 7:50:04 AM

Subject: RE: Duke Surgery Monday - tips? & blog

Hi Martha,

I think I forgot to send my last email, so I will do this again. The best thing

you can do is make sure the staff is doing all that is needed for your child.

The hospital and staff can make all the difference with a person's recovery. I

have had two detetherings and the first hospital experience was awful, they

didn't listen to my needs, they were rude, and refused to get me up and moving.

The second the nurses and staff were so nice, listened to what I needed, and

made sure all orders were followed exactly as the doctor ordered (this one was

at a different hospital).

I also have a blog that I update about my experiences and the recovery process.

http://beegeelover.blogspot.com/

It is about my journey with Spina bifida and TCS. Always remember ask alot of

questions, write them down ahead of time as you have a tendency to forget them.

I will visit your blog and keep track of your child's progress.

To: tetheredspinalcord

From: hollandmeh@...

Date: Wed, 13 Apr 2011 19:23:30 +0000

Subject: Duke Surgery Monday - tips? & blog

 

   

     

     

      Hi! My 10 month old daughter will be turning 11 months old Sunday and

arriving at Duke Childrens Hospital Monday morning for her TCS surgery. She has

the lipomyelomeningocele and the fatty filum tethers. Dr. Fuchs is her

neurosurgeon. We have been told she'll be in the hospital, mostly laying flat

6-7 days. I'm just curious if anyone has any last minute advice for us on things

to bring, questions to ask, etc.

Also, I've started a blog about our journey if anyone is interested. I am brand

new at blogging and will work on updates as we go. I've just started it. It is: 

babycoller.blogspot.com  and I felt it would be good to do for our friends and

families as well as other families wanting to learn more about the process.

Thanks!

Martha

   

   

   

   

                         

[Guest guest]

Hi Martha,

My 18 month old son, Luke, had a fatty filum release with Dr. Fuchs when he was

12 months.  Dr. Fuchs was excellent!  Our experience was a good one - from

surgery to the PACU, but once they moved Luke to the hospital floor & out of the

PACU, we were pretty disappointed with the nursing staff.  They seemed to not

be very attentive and I had to ask them for pretty much everything -- even meds

that Luke was supposed to get at a certain time.  So, my advice would be to

make sure that you keep a good watch over your daughter while recovering and

don't be hesitant to let the nursing staff know when she needs something.

 Another tip... another mom had told me to get our son mylar balloons (can get

them from the gift shop) to look at while he was on his back recovering.  This

helped a lot.  He was interested in them and liked to play with the ribbons,

etc.  I also packed some of his favorite DVDs and fave blankey, and lots of

paci's.

Let me know if you have any more questions.

:-) Allie

Subject: Re: Duke Surgery Monday - tips? & blog

To: tetheredspinalcord

Date: Thursday, April 14, 2011, 9:24 AM

 

I had two of three tsc surgeries at Duke,, I actually live 3 miles from

Duke!!

Duke is wonderful, and you are in wonderful hands!! Dr. Fuchs is the very very

best!!!!! Your family will be in my prayers

e

________________________________

To: tetheredspinalcord

Sent: Thu, April 14, 2011 7:50:04 AM

Subject: RE: Duke Surgery Monday - tips? & blog

Hi Martha,

I think I forgot to send my last email, so I will do this again. The best thing

you can do is make sure the staff is doing all that is needed for your child.

The hospital and staff can make all the difference with a person's recovery. I

have had two detetherings and the first hospital experience was awful, they

didn't listen to my needs, they were rude, and refused to get me up and moving.

The second the nurses and staff were so nice, listened to what I needed, and

made sure all orders were followed exactly as the doctor ordered (this one was

at a different hospital).

I also have a blog that I update about my experiences and the recovery process.

http://beegeelover.blogspot.com/

It is about my journey with Spina bifida and TCS. Always remember ask alot of

questions, write them down ahead of time as you have a tendency to forget them.

I will visit your blog and keep track of your child's progress.

To: tetheredspinalcord

From: hollandmeh@...

Date: Wed, 13 Apr 2011 19:23:30 +0000

Subject: Duke Surgery Monday - tips? & blog

 

   

     

     

      Hi! My 10 month old daughter will be turning 11 months old Sunday and

arriving at Duke Childrens Hospital Monday morning for her TCS surgery. She has

the lipomyelomeningocele and the fatty filum tethers. Dr. Fuchs is her

neurosurgeon. We have been told she'll be in the hospital, mostly laying flat

6-7 days. I'm just curious if anyone has any last minute advice for us on things

to bring, questions to ask, etc.

Also, I've started a blog about our journey if anyone is interested. I am brand

new at blogging and will work on updates as we go. I've just started it. It

is: 

babycoller.blogspot.com  and I felt it would be good to do for our friends and

families as well as other families wanting to learn more about the process.

Thanks!

Martha