RE: VEPTR Surgery

[Guest guest]

I am not the one to ask or answer this question, but when we were making tx decidions for Cole, our local (cleveland) orthoped. surg. talked about doing rods. I can remember he was very much for them, but that the kiddos had to have surgery every 4-6 months to extend them, and sometimes even more often because they break easily. I don't know much about VEPTR other than it seems to be the latest greatest thing. , the founder of this board, is VERY knowledgeable about ALL tx options, and her daughter is having the VEPTR surgery very soon. It tells me something about VEPTR if she is doing it... that is is a good thing. Others on this board are more knowledgeable, and I'm sure will chime in. Joe <jsalt1@...> wrote: How many parents on this list have a child who has received the Veptr? If so, what hospital was the surgry done at, and who was the doctor? Was this surgery successful, was there complications, and how long of a hospitalization did the initial implant require? Have you been happy with the VEPTR for your child? Would you do it again? If given the choice of having your child receive spinal growth rods or the Veptr which would you want for your child and why? My daughter suffers from a mild degree of thoracic insuffciency secondary to a 50 degree scolosis and hypotonia, which has resulted in restrictive lung disease, and a constricted chest wall. The Titanium Rib Project in San evaluated her and have recommended the VEPTR

however I am having a time getting her pediatric orthopaedist in Atlanta to agree to the VEPTR. He still thinks that spinal growth rods would be the best treatment for her. I was just wanting some parent input from parents who have more experience with VEPTR or spinal growth rods than I do. This is such a hard decision to make b/c if our Atlanta doctor does not agree to the VEPTR then I have to decide if I want to go ahead and travel to Texas every 4 to 6 months for the next 5 to 7 yrs until she is old enough to have her spinal fusion, or do I want to take her to a Shriner's Hospital for a third opinion. I took her to the doctor that developed the VEPTR and he says VEPTR is the best treatment for her medical condition, however why wouldn't another pediatric orthopaedic doctor who is FDA approved to preform the VEPTR agree? Have any of you ran

into this problem? Atlanta is so much closer to me than San , Texas. Also has anyone heard of a little girl named, Anslee who recieved the VEPTR in San and wound up with spinal cord injuries and paralysis from it? I would really like to talk to her parent/s if possible. I don't know her last name but do know that she is from Georgia. Deborah Salter

Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

Deborah,

We were told that the VEPTR would be best for our dd, becuase of her

fused ribs and congenital scoli. Out local ortho suggested that

this would be overkill for her and that he wanted to see more VEPTRS

done, that it was too new. Another ortho suggested that this local

ortho was very old school. He felt that this local dr. may be

thinking of just doing the minimal amount for our dd, when the VEPTR

could give her the best option. The local dr. suggested fusion if

her curve progressed more than 5 degrees - well her curve progressed

20 degrees and than he said if she progresses more than 5 degrees we

will do a fusion. He also said he would just cut apart her fused

ribs, which I later found out does not work and the ribs always grow

back together, sometimes with more of a vengeance. IT is all very

confusing. A couple of things I factored into our decision about

dr.s were,

does the dr. listen to your concerns or does he want to do it his

way or no way?

I did not want to have a dr. who did not take our opinion into

consideration.

When you have a problem, who will you be able to talk to?

our local dr. did not call us back when I called with great concern

bc our dd could not yet sit up without falling. He had his nurse

call back and tell me to see a neurologist. This told me that if I

had an urgent concern, he may not respond. I can email our current

ortho, which I try not to abuse, I have found that if I email during

the day the dr. usually responds before the next morning.

How are the nurses, support staff?

This can be very important. The nurses at our local dr.s office

were a 101 years old, after every single x ray taken at that office,

the dr. ended up saying that it did n't come out very good. This

told me that they must not have been good at taking the xrays, or

it was an old machine.

We have ended up traveling very far for our dd's ortho. Dh and I

were in a terrible snat before we found this dr. Now we both like

this one. It has been hard to travel, and expensive. But, I dont

want to regret later that I didn't take her to who I thought was the

best.

I have found that each dr. has some bit of information that has

helped us, not one has had every answer we have been looking for.

Now when we take her in , I try to tell myself to look for one thing

that I learned from the dr. and I will be satisfied. ( at least for

that moment)

mary

>

> How many parents on this list have a child who has received the

Veptr? If so, what hospital was the surgry done at, and who was the

doctor? Was this surgery successful, was there complications, and

how long of a hospitalization did the initial implant require? Have

you been happy with the VEPTR for your child? Would you do it

again? If given the choice of having your child receive spinal

growth rods or the Veptr which would you want for your child and

why?

>

> My daughter suffers from a mild degree of thoracic insuffciency

secondary to a 50 degree scolosis and hypotonia, which has resulted

in restrictive lung disease, and a constricted chest wall. The

Titanium Rib Project in San evaluated her and have

recommended the VEPTR however I am having a time getting her

pediatric orthopaedist in Atlanta to agree to the VEPTR. He still

thinks that spinal growth rods would be the best treatment for her.

>

> I was just wanting some parent input from parents who have more

experience with VEPTR or spinal growth rods than I do. This is such

a hard decision to make b/c if our Atlanta doctor does not agree to

the VEPTR then I have to decide if I want to go ahead and travel to

Texas every 4 to 6 months for the next 5 to 7 yrs until she is old

enough to have her spinal fusion, or do I want to take her to a

Shriner's Hospital for a third opinion. I took her to the doctor

that developed the VEPTR and he says VEPTR is the best treatment for

her medical condition, however why wouldn't another pediatric

orthopaedic doctor who is FDA approved to preform the VEPTR agree?

Have any of you ran into this problem?

> Atlanta is so much closer to me than San , Texas.

> Also has anyone heard of a little girl named, Anslee who recieved

the VEPTR in San and wound up with spinal cord injuries and

paralysis from it? I would really like to talk to her parent/s if

possible. I don't know her last name but do know that she is from

Georgia.

>

> Deborah Salter

>

[Guest guest]

Hi Deborah,

My dd, , is a VEPTR patient. Her story can also be found at www.infantilescoliosis.org. One thing to note: has Congenital Scoliosis, not infantile and the two are vastly different. Another group to look into is CongenitalScoliosisSupport and www.veptr.com

had hers done at Cincinnati Children's Hospital Medical Center (CCHMC). She was the first patient to have it done there. It just so happened that Dr. was going to be at CCHMC to be a visiting professor and is a good friend and colleague of 's ortho, Dr. Crawford. So they made the arrangements to do it together. Everything went great! She was in the hospital for 10 days. She just had her first expansion on Nov 1 and was in the hospital overnight. We have been very happy with her care and the surgery. I would do it again in a heartbeat. I had taken her to Boston to be evaluated by Dr. Emans for the VEPTR, at the time it was still in clinical trials and I went with the blessing of her ortho. At the time, she was not eligible for the study, but Dr. Crawford and I both agreed that as soon as it passed the FDA, it would be the best option for her due to her fused ribs and scoliosis.

Different doctors are going to give you different reasons for doing or not doing the surgery. While the dr may be FDA certified to do it, he/she may not feel it is in the best interest of the child, or they may not be comfortable doing it in certain situations. Not all surgeons are created equal! They are all going to have their own specialties, and there are some things even the most qualified surgeon may not choose to do. That said, if Dr. has said she is a good candidate, I would tend to go with his assessment. He is the utmost authority on the surgery. Now, you may not have to travel to TX every 4-6 months. Possibly your ortho would be more comfortable doing the expansions after Dr. puts in the VEPTRs. I would ask them about that.

I hope this helps, please feel free to contact me if I can help in any way.

Gail

Veptr surgery

How many parents on this list have a child who has received the Veptr? If so, what hospital was the surgry done at, and who was the doctor? Was this surgery successful, was there complications, and how long of a hospitalization did the initial implant require? Have you been happy with the VEPTR for your child? Would you do it again? If given the choice of having your child receive spinal growth rods or the Veptr which would you want for your child and why?

My daughter suffers from a mild degree of thoracic insuffciency secondary to a 50 degree scolosis and hypotonia, which has resulted in restrictive lung disease, and a constricted chest wall. The Titanium Rib Project in San evaluated her and have recommended the VEPTR however I am having a time getting her pediatric orthopaedist in Atlanta to agree to the VEPTR. He still thinks that spinal growth rods would be the best treatment for her.

I was just wanting some parent input from parents who have more experience with VEPTR or spinal growth rods than I do. This is such a hard decision to make b/c if our Atlanta doctor does not agree to the VEPTR then I have to decide if I want to go ahead and travel to Texas every 4 to 6 months for the next 5 to 7 yrs until she is old enough to have her spinal fusion, or do I want to take her to a Shriner's Hospital for a third opinion. I took her to the doctor that developed the VEPTR and he says VEPTR is the best treatment for her medical condition, however why wouldn't another pediatric orthopaedic doctor who is FDA approved to preform the VEPTR agree? Have any of you ran into this problem?

Atlanta is so much closer to me than San , Texas.

Also has anyone heard of a little girl named, Anslee who recieved the VEPTR in San and wound up with spinal cord injuries and paralysis from it? I would really like to talk to her parent/s if possible. I don't know her last name but do know that she is from Georgia.

Deborah Salter

[Guest guest]

Hi Deborah,

Have we spoken before? Your name looks familiar. If

so, ignore my ramblings below. I've tried to answer

your questions based on our VEPTR experiences...

<<How many parents on this list have a child who has

received the Veptr? If so, what hospital was the

surgry done at, and who was the doctor?>>

Braydon is a VEPTR patient. He was 6yrs old when he

had his VEPTR devices (two) placed. He had the

implant surgery and first expansion done in San

by Dr. . Now, Braydon stays at

Primary Children's Medical Center in Salt Lake City

for expansions. His local ortho is Dr.

(really).

<<Was this surgery successful, was there

complications, and how long of a hospitalization did

the initial implant require?>>

YES! The surgery was a complete success. Braydon's

body is now well-balanced (neck and pelvis are

well-aligned, hips and shoulders are even, etc.). His

lung function improved from 46% to 75%. NO

complications! He was in-patient for 13 days for the

initial implant. That was back in 2001 when they were

EXTRA conservative about these kids.

<<Have you been happy with the VEPTR for your child?

Would you do it again?>>

ABSOLUTELY! In a heartbeat, we would do this again.

Braydon's quality of life has improved more than we

had hoped.

<<If given the choice of having your child receive

spinal growth rods or the Veptr which would you want

for your child and why?>>

The biggest difference between the growth rods and the

VEPTR device is the placement of the devices. The

growth rods are placed along the spine. They are

FUSED into place at the top and the bottom for

stability. This invades the bone structure of the

spine. In an already compromised spine, I wouldn't

want ANYMORE damage to the spine and its bone

structure. The VEPTR devices are placed under the

scapula (shoulderblade) attached to an upper rib at

the top and to either a lower vertebrae (Braydon's is

attached to his L1 vert with a horseshoes-shaped hook)

or the pelvis. The other difference is that the

design of the VEPTR device provides volume and

circumferential improvement, not just vertical

improvement. Does that make sense? After each of

Braydon's expansion surgeries, his oxygen saturation

improves from 92/94% to 98-99%. The volume is

improved each time.

>>The Titanium Rib Project in San evaluated

her and have recommended the VEPTR however I am having

a time getting her pediatric orthopaedist in Atlanta

to agree to the VEPTR. He still thinks that spinal

growth rods would be the best treatment for her.>>

Maybe part of the reason your Atlanta ortho is pushing

for growth rods is that his hospital isn't approved to

actually do the VEPTR surgery? The VEPTR has the

FDA's HDE approval, but that doesn't mean ANY orthopod

can actually perform this surgery. The ortho must

have the hospitals approval (IRB approval) which means

the hospital gives their financial backing. The VEPTR

procedure means a huge committment from the surgeon

and hospital. Some places don't think this is a risk

worth taking. IMHO, if your daughter has lung issues

already, the growth rods will not address the current

lung position and function. The growth rods may

prevent future issues, but won't *fix* it. The VEPTR

procedure has a much better chance of improving her

lung capacity and quality of the lung function.

<<This is such a hard decision to make b/c if our

Atlanta doctor does not agree to the VEPTR then I have

to decide if I want to go ahead and travel to Texas

every 4 to 6 months for the next 5 to 7 yrs until she

is old enough to have her spinal fusion, or do I want

to take her to a Shriner's Hospital for a third

opinion.>>

If you decide to go the VEPTR route, traveling will be

an inconvenience, but there are ways to make it work.

Also, since your daughter is " older " she will likely

have surgery every 6-8-12 months, rather than more

frequently. The little ones grow faster than the

older kids. Braydon went 8 months between his last

expansions, and could have gone longer. And, his

chestwall device wasn't expanded at all. By the time

he has surgery again, he'll have gone more than a year

without having his chestwall device expanded.

Shriners is a non-issue here... unless you go to

Shriners in Philly. They are the only Shriners doing

the VEPTR procedure currently. Any other procedure

will be what you already have access to.

<<I took her to the doctor that developed the VEPTR

and he says VEPTR is the best treatment for her

medical condition, however why wouldn't another

pediatric orthopaedic doctor who is FDA approved to

preform the VEPTR agree?>>

I touched on this before. The doc in Atlanta may

think the growth rods are " as good " for her as the

VEPTR because it is the only procedure he personally

can offer. The FDA approval means that more hospitals

can apply to begin performing this procedure, but not

any orthopedic surgeon can do it yet. My gut feeling

is that the Atlanta surgeon can't do the VEPTR so he's

offering a second-best option. You must decide what

is best for your daughter. That's the hard part.

<<Also has anyone heard of a little girl named, Anslee

who recieved the VEPTR in San and wound up

with spinal cord injuries and paralysis from it?>>

I remember years ago hearing this rumor. I believe

that there is more to the paralysis than *just* the

VEPTR implants. She had major medical issues and it

was a complex case. I don't know the situation so I

can't comment with certainty. I do know that each

case is unique and there are always risks with ANY

surgery. The growth rod procedure scares the

you-know-what out of me BECAUSE of the close proximity

to the spinal cord and the fusing they do to place the

rods. Braydon's VEPTR implant was a very positive

experience for our family.

Done rambling LOL

Carmell

mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL,

GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic

insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96),

missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

,

Thank you for your reply..I have been so busy that I am just now answering most of my mails.

I still am in the decision process.

Deborah

Re: Veptr surgery

Deborah,We were told that the VEPTR would be best for our dd, becuase of her fused ribs and congenital scoli. Out local ortho suggested that this would be overkill for her and that he wanted to see more VEPTRS done, that it was too new. Another ortho suggested that this local ortho was very old school. He felt that this local dr. may be thinking of just doing the minimal amount for our dd, when the VEPTR could give her the best option. The local dr. suggested fusion if her curve progressed more than 5 degrees - well her curve progressed 20 degrees and than he said if she progresses more than 5 degrees we will do a fusion. He also said he would just cut apart her fused ribs, which I later found out does not work and the ribs always grow back together, sometimes with more of a vengeance. IT is all very confusing. A couple of things I factored into our decision about dr.s were, does the dr. listen to your concerns or does he want to do it his way or no way?I did not want to have a dr. who did not take our opinion into consideration.When you have a problem, who will you be able to talk to?our local dr. did not call us back when I called with great concern bc our dd could not yet sit up without falling. He had his nurse call back and tell me to see a neurologist. This told me that if I had an urgent concern, he may not respond. I can email our current ortho, which I try not to abuse, I have found that if I email during the day the dr. usually responds before the next morning.How are the nurses, support staff?This can be very important. The nurses at our local dr.s office were a 101 years old, after every single x ray taken at that office, the dr. ended up saying that it did n't come out very good. This told me that they must not have been good at taking the xrays, or it was an old machine.We have ended up traveling very far for our dd's ortho. Dh and I were in a terrible snat before we found this dr. Now we both like this one. It has been hard to travel, and expensive. But, I dont want to regret later that I didn't take her to who I thought was the best.I have found that each dr. has some bit of information that has helped us, not one has had every answer we have been looking for. Now when we take her in , I try to tell myself to look for one thing that I learned from the dr. and I will be satisfied. ( at least for that moment)mary>> How many parents on this list have a child who has received the Veptr? If so, what hospital was the surgry done at, and who was the doctor? Was this surgery successful, was there complications, and how long of a hospitalization did the initial implant require? Have you been happy with the VEPTR for your child? Would you do it again? If given the choice of having your child receive spinal growth rods or the Veptr which would you want for your child and why? > > My daughter suffers from a mild degree of thoracic insuffciency secondary to a 50 degree scolosis and hypotonia, which has resulted in restrictive lung disease, and a constricted chest wall. The Titanium Rib Project in San evaluated her and have recommended the VEPTR however I am having a time getting her pediatric orthopaedist in Atlanta to agree to the VEPTR. He still thinks that spinal growth rods would be the best treatment for her. > > I was just wanting some parent input from parents who have more experience with VEPTR or spinal growth rods than I do. This is such a hard decision to make b/c if our Atlanta doctor does not agree to the VEPTR then I have to decide if I want to go ahead and travel to Texas every 4 to 6 months for the next 5 to 7 yrs until she is old enough to have her spinal fusion, or do I want to take her to a Shriner's Hospital for a third opinion. I took her to the doctor that developed the VEPTR and he says VEPTR is the best treatment for her medical condition, however why wouldn't another pediatric orthopaedic doctor who is FDA approved to preform the VEPTR agree? Have any of you ran into this problem? > Atlanta is so much closer to me than San , Texas.> Also has anyone heard of a little girl named, Anslee who recieved the VEPTR in San and wound up with spinal cord injuries and paralysis from it? I would really like to talk to her parent/s if possible. I don't know her last name but do know that she is from Georgia. > > Deborah Salter>

[Guest guest]

Shellie,

Thanks for your reply. I am still in the decision process.

Deborah

Re: Veptr surgery

I just remembered something else. We took Moriah to Kansas City before making our decision and the doc there said he agreed with our previous ortho in Denver that he would not do the veptr. We felt he just didn't want to disagree professionally with another doctor. We decided to do the veptr in San . We have not regretted it. Now the KC doc is training to do the Veptr and may one day be doing Moriah's expansions. I am not aware of Ashlee. Spinal cord injury is a risk in any spinal surgery. Mo has had numerous proceedures and we are just thankful that didn't happen. In her case surgery was our only choice and we had to pick which one we felt was best given all the information.

ShellieShellie Grant <shelliegrant@...> wrote:

Deborah,

Our daughter Moriah has the Veptr implants and she would not be alive without them. She has a curve that progresses quickly with lots of rotation. Her story is posted at www.infantilescoliosis.org. We go to San under the care of Dr. , co-inventor of the Veptr. I can say that the veptr surgeries have been our best experiences. Moriah has had 3 open heart surgeries, two halo and two spinal fusion surgeries, plus a tracheostomy. Her first surgery in Texas was her first not to get pnuemonia immediately after. She has never had that complication in Texas. They are awesome at pain management, and she has never recovered quicker than she has from Veptr surgeries, and from being in Texas. Nothing else has tackled her progression like the veptr. How they are advanced over growth rods is where they are mounted (ribs or pelvis, not spine). Our other option was a fixing rod which would have stunted her growth. They are very professional there, take each kid as an individual, and do great work. I would highly recommend it. Moriah is having her right side worked on on Feb 14th. We hope it will be her last major hardware surgery. After that she will have expansion every 6 months with hospital stay being 1-2 days. We look forward to working on getting her trach out this summer due to her lungs improving so much. I would love to try and answer any other questions. Email me directly and I'll give you my number.

Shellie (Kansas)Joe <jsalt1@...> wrote:

How many parents on this list have a child who has received the Veptr? If so, what hospital was the surgry done at, and who was the doctor? Was this surgery successful, was there complications, and how long of a hospitalization did the initial implant require? Have you been happy with the VEPTR for your child? Would you do it again? If given the choice of having your child receive spinal growth rods or the Veptr which would you want for your child and why?

My daughter suffers from a mild degree of thoracic insuffciency secondary to a 50 degree scolosis and hypotonia, which has resulted in restrictive lung disease, and a constricted chest wall. The Titanium Rib Project in San evaluated her and have recommended the VEPTR however I am having a time getting her pediatric orthopaedist in Atlanta to agree to the VEPTR. He still thinks that spinal growth rods would be the best treatment for her.

I was just wanting some parent input from parents who have more experience with VEPTR or spinal growth rods than I do. This is such a hard decision to make b/c if our Atlanta doctor does not agree to the VEPTR then I have to decide if I want to go ahead and travel to Texas every 4 to 6 months for the next 5 to 7 yrs until she is old enough to have her spinal fusion, or do I want to take her to a Shriner's Hospital for a third opinion. I took her to the doctor that developed the VEPTR and he says VEPTR is the best treatment for her medical condition, however why wouldn't another pediatric orthopaedic doctor who is FDA approved to preform the VEPTR agree? Have any of you ran into this problem?

Atlanta is so much closer to me than San , Texas.

Also has anyone heard of a little girl named, Anslee who recieved the VEPTR in San and wound up with spinal cord injuries and paralysis from it? I would really like to talk to her parent/s if possible. I don't know her last name but do know that she is from Georgia.

Deborah Salter

PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

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[Guest guest]

Gail,

Thanks for your reply. I have been so busy that I am just now getting back to my emails. I am still in the decision process. Abigail's scolosis is neuromuscular.

Deborah

Veptr surgery

How many parents on this list have a child who has received the Veptr? If so, what hospital was the surgry done at, and who was the doctor? Was this surgery successful, was there complications, and how long of a hospitalization did the initial implant require? Have you been happy with the VEPTR for your child? Would you do it again? If given the choice of having your child receive spinal growth rods or the Veptr which would you want for your child and why?

My daughter suffers from a mild degree of thoracic insuffciency secondary to a 50 degree scolosis and hypotonia, which has resulted in restrictive lung disease, and a constricted chest wall. The Titanium Rib Project in San evaluated her and have recommended the VEPTR however I am having a time getting her pediatric orthopaedist in Atlanta to agree to the VEPTR. He still thinks that spinal growth rods would be the best treatment for her.

I was just wanting some parent input from parents who have more experience with VEPTR or spinal growth rods than I do. This is such a hard decision to make b/c if our Atlanta doctor does not agree to the VEPTR then I have to decide if I want to go ahead and travel to Texas every 4 to 6 months for the next 5 to 7 yrs until she is old enough to have her spinal fusion, or do I want to take her to a Shriner's Hospital for a third opinion. I took her to the doctor that developed the VEPTR and he says VEPTR is the best treatment for her medical condition, however why wouldn't another pediatric orthopaedic doctor who is FDA approved to preform the VEPTR agree? Have any of you ran into this problem?

Atlanta is so much closer to me than San , Texas.

Also has anyone heard of a little girl named, Anslee who recieved the VEPTR in San and wound up with spinal cord injuries and paralysis from it? I would really like to talk to her parent/s if possible. I don't know her last name but do know that she is from Georgia.

Deborah Salter

[Guest guest]

God bless you both. I had a very difficult nite with some postop pain and then I

read your note and here again is that lesson about my problems compared with

someone else's. I can't imagine what you are going through. I don't know

anything about this situation, just want to send my love and support.

Debbie

lilyrosedaisy2003 <lilyrosedaisy2003@...> wrote:

Hello. i am a mother of a two year child with severe physical

disabilities. Can't walk, roll, lift head, or pretty much anything

else. He has very very low muscle tone due to a problem with his

nerves. He will be having the VEPTR surgery performed in December to

help straighten his spine and open his ribs so that his lungs can

develop better. Have any parents been through this before with a child

who has similar medical conditions? What is it like after surgery

(please tell me everything you feel comfortable telling--picking the

child up, positioning them, holding them, etc.)? How did you travel

home (ambulance, personal vehicle in car seat or laying down, etc.)?

Was the child ever able to be positioned in a sitting up position and

not have discomfort? Did you have to use a nurse after coming home and

how long? How long (if you work) did you stay at home with child

before going back to work?

As you can tell, i have a lot of questions. Like I said, I want to

know everything. I'm really nervous and I want to know what to

expect. I know that without this surgery my son's life will be short

and painful so I'm praying on it and going ahead with it. Please keep

me (Eva) and Eddie J in your prayers.

[Guest guest]

Dearest Eva and little Eddie J...

I hope you find the answers you seek.

Please know I will light a candle for both of you that healing will

come your way.

My warmest thoughts to you...

Ama

> lilyrosedaisy2003 <lilyrosedaisy2003@...> wrote:

> Hello. i am a mother of a two year child with severe

physical

> disabilities. Can't walk, roll, lift head, or pretty much anything

> else. He has very very low muscle tone due to a problem with his

[Guest guest]

Hi Eva and Eddie,

Welcome. My Braydon is now 12 yrs old. He is a VEPTR patient. Braydon has no

physical restrictions and is fully mobile. He does have reduced lung function

(43% total). I do know of several young children who have severe physical

disabilities who have benefited from VEPTR. Several who had been ventilator

dependent have been able to go off the vent, often not even on room air. The

VEPTR has helped many improve their quality of life.

<<What is it like after surgery (please tell me everything you feel comfortable

telling--picking the child up, positioning them, holding them, etc.)?>>

This surgery is very serious, but its not as all-encompassing as you may think.

You will learn the " scoop " method to pick him up. Put your arms under his

shoulder and under his hips to lift. DO NOT lift him under his armpits. Once

you get him picked up, he should be fine as you hold him like you normally

would. Braydon found it best to get comfortable in the hospital bed, not in my

arms. I didn't like that, but it was best for him (he was 6yrs old when he had

his VEPTR surgery). Braydon had fusion surgery when he was 11 months old. He

was able to be more comfortable in the bed, not in my arms then too. Even as an

infant.

<<How did you travel home (ambulance, personal vehicle in car seat or laying

down, etc.)?>>

If Eddy is more comfortable (or breathes better) laying down, there is a great

harness seatbelt that can be used in a reclining/laying down position in the

car. http://www.ezonpro.com/products/medicalTransport/modifiedVest/m203.shtml

Braydon was fine sitting, as long as we had pillows or something soft around

him. He flew home 3 weeks post-op and did fine.

<<Was the child ever able to be positioned in a sitting up position and not have

discomfort?>>

Again, if Eddy has a problem with being upright already, then you may need to

address this after surgery as well. However, MOST kids do just fine sitting.

It can be uncomfortable immediately after surgery, but within a few weeks, they

are better than being back to normal.

<<Did you have to use a nurse after coming home and how long?>>

No. Nothing was different after surgery.

<<How long (if you work) did you stay at home with child before going back to

work?>>

I stayed home for 4 weeks post-op. My hubby wasn't working, so Braydon had a

parent at home with him for 8 weeks post-op, until he started school again.

There are many things to think about, but try to take it one step at a time.

Don't make this more overwhelming than it already is. There is a great

messageboard with families of VEPTR kids found here: http://www.veptr.com I

think you will find lots of answers to your questions on this site.

Good luck! I'd love to hear how things are going for you.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 5cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

_________________________________________________________________

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http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us

[Guest guest]

Hi Eva...

In addition to any help you receive here, you'll find other parents

who have gone through VEPTR here:

http://www.scoliosis.org/forum/forumdisplay.php?f=102

Regards,

>

> Hello. i am a mother of a two year child with severe physical

> disabilities. Can't walk, roll, lift head, or pretty much anything

> else. He has very very low muscle tone due to a problem with his

> nerves. He will be having the VEPTR surgery performed in December to

> help straighten his spine and open his ribs so that his lungs can

> develop better. Have any parents been through this before with a child

> who has similar medical conditions?