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BobbysMom
Posted 2010-07-13 11:20 AM (#39542)
Subject: New to this site


New User

Posts: 1

My son, Bobby, is scheduled for the VEPTR surgery with Dr. Emans in Boston. The surgery date is August 10, 2010. Bobby also sees Dr. Waters in the same office for a right radial club hand. Does anyone have any experience with Dr. Emans for this surgery and can offer any advice or information about what we can expect? Length of stay in the hospital, recovery, etc? Any information would be appreciated - I am starting to become very nervous! Bobby is 8 years old and does not want to talk about any of this, but is obviously nervous himself. How did you talk to your children about this surgery?

Thanks,

Joanne
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Courtney
Posted 2010-07-13 5:24 PM (#39544 - in reply to #39542)
Subject: Re: New to this site



Regular

Posts: 86
252525
Location: Dallas, Tx
Hi Joanne. My name is Courtney Brown. I do not have any experience with Dr. Emans as I was a Dr. Campbell patient. I was the 8th child in the world to have this surgery done. It has changed my life greatly and for the best. I don't remember much about the initial surgery as I was 2 years old. I do remember when it would be a change out surgery I would be in the hospital for about 3-4days and if it was just an expansion I would usually left the very next day once I was around the age of 7-8. Since I am a patient I don't know how to help with the parent waiting part of it but it goes fast for us patients. I have been done with surgeries for about 5 years now. I am 20yrs old by the way. I am only 4ft 1in tall and the doctors believe that I was not shortened much due to scoliosis but that I would have been near this heighth anyway as my arm span says that I would have been 4ft 8in, if I remember right. I am so grateful for my parents that choose to do this for me because my life would be nothing like it is today. I was on my high school drill team, a biomedical academy, worked at vet's office and now am a junior at Texas State University. One thing I want all parents to know for their kids is that besides the few restrictions of no somersaults or contact sports to let your kid decide what they can or can't do. Don't hold them back because you are scared the rib might come out. Trust me Bobby will know what he can and can't do and won't need anyone to tell him. Also if it would help Bobby I would love to talk to him about any questions he may have or whatever as I am a patient and have actually gone through it. Email me anytime at cb1567@txstate.edu if you or Bobby would like to talk.
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Carmell
Posted 2010-07-13 10:21 PM (#39547 - in reply to #39542)
Subject: RE: New to this site



Expert

Posts: 3243
2000100010010025
Location: Utah

Hi Joanne - Welcome.

Dr. Emans is top-notch.  He is very kind and compassionate, besides being an excellent surgeon.  I met him once, but live out west, so my son has not had surgery with him.  Several families here see him.  Many travel from out of state just to have him do their child's surgeries.  I hope someone will reply soon.  

My Braydon was 6yrs old when he had his VEPTR implant surgery.  It is very scary.  Hopefully you can help him understand that the anticipation and anxiety before surgery is almost the worst part.  So many things you worry about, because you don't know exactly what to expect.  Take lots of deep breaths.  Maybe help him come up with something fun to think about - daily.  Distraction is good.  Take care and keep us updated.  

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Zoes Nana
Posted 2010-07-15 8:50 AM (#39554 - in reply to #39542)
Subject: Re: New to this site



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
HI JOANNE, AND WELCOME TO THE 'VEPTR BOARD'....
I KNOW HOW YOU FEEL, AS WE WERE STANDING JUST WERE YOU ARE, 10 YEARS AGO...
ZOE HAS HAD HER 'VEPTRS' SINCE 8-3-00...DONE BY DR. JOHN EMANS IN BOSTON...AT THAT TIME THERE WERE
JUST 3 SITES DOING THE SURGERY....WE LIVE IN PENNSYLVANIA, AND TIME WAS AN ISSUE, SO OUR DECISION, THOUGH NOT MADE IN
HASTE, WAS MADE QUICKLY....ALRENE MOM CHOOSE TO TAKE ZOE TO DR. EMANS FOR HER EVAL. AND HER SURGERY WAS DONE AT BCH JUST WEEKS AFTER
MEETING WITH HIM....ZOE WAS DR. EMANS 8TH 'VEPTR IMPLANT'....AND #108th IN THE WORLD...AND HE HAS DONE CLOSE TO 30 SURGERIES ON ZOE TO DATE...AND WE COULD NOT SPEAK MORE HIGHLY OF HIM, AND THE HOSPITAL...
ZOE WAS JUST 2-1/2 YEARS OLD WHEN SHE HAD THE SURGERY, SO THEY TRULY WAS NO PREPARING HER....FOR US....I MUST SAID IT WAS A HARD TIME, BUT WE PULLED TOGETHER AS A FAMILY....TOOK ZOE ON A BEACH VACATION, MADE A LIST, AND KNOWING THAT WE WOULD BE FAR FROM MOST OF THE FAMILY AND FRIENDS, AND HOME WE PREPARED, THINGS LIKE, ZOE'S FAVORITE TOY, A NEW BLANKET FOR HER BED, TO BRIGHTEN UP THE 'WHITE'...STILL FIND THAT HELPS EVEN WITH TODAYS SURGERIES....
WE ALSO PUT TOGETHER A LITTLE PHOTO ALBUM WITH KEY FAMILY AND FRIENDS...AND BELIEVE ME, THAT NOT ONLY HELPED ZOE, BUT IT HELPED US AS WELL...
AND THEN OF COURSE ALL THE LITTLE THINGS YOU NEED FOR A HOSPITAL STAY...
FOR US STAYING IN BOSTON CAME AT A GREAT COST...WE STAYED IN A HOTEL FOR A MONTH....ZOE WOULD HAVE BEEN RELEASE ON THE 10TH DAY AFTER SURGERY, BUT ANOTHER SURGERY, NO VEPTR HAD TO BE DONE, AND THAT PUT US THERE FOR 3 MORE WEEKS...
AS I SAID IT IS 10 YEARS NOW, AND THINGS GET BETTER EVERY DAY....HOSPITAL STAYS GET SHORTED, RECOVERY TIME, NOT EASIER, BUT WE ARE MORE EDUCATED TO THE STEPS TO RECOVERY NOW...
HAVE YOUR QUESTIONS READY...WRITTEN DOWN, AND SPEND TIME TALKING TO PRE-OP ABOUT THINGS LIKE, PAIN MANAGEMENT, KEEPING THE BOWELL MOVING, BECAUSE ANESTH. SLOWS THEM DOWN...KEEP POSSITIVE, AND I KNOW BOBBY WILL AS WELL...
LIKKE CARMEL MENTIONED "DISTRACTION IS GOOD"...MAKE A LITTLE TIME NOW...TALK TO HIM ABOUT WHAT WILL BE GOING ON, BUT THEN LET IT GO...SET IT ASIDE, AND ENJOY THIS TIME BEFORE THE SURGERY....I ALWAYS FEEL...'THE STRONGER YOU GO IN, IS THE STRONGER YOU WILL COME OUT'...HOPE THAT MAKES SENSE...
AND KNOW, THAT THOUGH WE CANNOT BE THERE WITH YOU IN THE FLESH, WE ARE ALL THERE WITH YOU AND BOBBY IN SPIRIT....
GOD BLESS, AND NEVER HESITATE TO ASK ANYTHING THAT IS ON YOUR MIND....
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Emily's Mom
Posted 2010-07-15 11:37 AM (#39555 - in reply to #39542)
Subject: Re: New to this site


Expert

Posts: 1582
1000500252525
Location: Greenbush, Minnesota
Welcome!
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Nicki, Alex's Mom
Posted 2010-07-18 3:42 AM (#39558 - in reply to #39542)
Subject: RE: New to this site



Elite Veteran

Posts: 853
5001001001002525
Location: Fort Wayne, IN
Welcome to the site!

Looks like we will miss you by just a couple weeks! My son is having his 14th (I think) surgery with Dr. Emans next week. As previously stated, he is an excellent surgeon. We travel from Indiana to see him.

For the initial surgery, we were there for 10 days if I remember correctly. Each child is different, though. Some are there much shorter than we were. For most of the lengthening surgeries, we have just been there overnight. I think once we were there for 2 nights, and once it was 3. Recovery time also varies quite a bit.

I understand your anxiety. As a parent, it's a difficult thing to decide. We know it's for their best interest, though. My son is now 9 years old, but he still gets a little nervous before each surgery. Just like Zoe, Alex was only 2 1/2 for the initial implant, so we really couldn't talk to him about it much.

Hope everything goes well. Please let us know if you have any other questions we can answer.



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jakesmom
Posted 2010-09-29 10:58 AM (#39921 - in reply to #39542)
Subject: Re: New to this site


New User

Posts: 2

My son, Jake, 5 years old was just diagnosed with a 50 degree curvature and TIS - yesterday (9/28/10). So, everything is new to us and we are taking a crash course in learning everything about the VEPTR. The veptr is what was told to us to help him. Can anyone help us? What are the complications - do thay happen often? How much pain will he be in? What is the recoperation time? How do your children manage with the adjustment surgeries that are needed? Does that require overnight stays in the hospital? How well does the veptr staighten your child's spine? if anyone can help us I would truly appreciate it. Right now my husband and I are so overwhelmd by everything and very scared for my beautiful son. i would be thankful for any insights.
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