Fears| Fears |
Hollysmom |
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New User Posts: 3 | So we are trying to decide what is best for our 9yr old daughter. The first of the year she was in hospital for 52 days. She had to have a trach placed due to her CO2 being 80 during the day and over 100 at night. She coded twice and had many more almost codes. Now we are being told the first thing they want us to try is to put her in halo-femur traction to see if straightening her spine would help increase her lung capacity and diaphragm movement but they are also talking about veptr rods...so my question is this... Has anyone had any bad experience with the veptr rods? With the surgery, the materials, the post op? Also has anyone gone through traction? | ||
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| Zoes Nana |
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 Expert Posts: 3970      Location: Plymouth, Pennsylvania | WELCOME TO THE VEPTR BOARD... I CANNOT ANSWER REGARDING THE HALO...BUT ZOE HAS HAD HER VEPTRS NOW FOR OVER 10 YEARS....IT IS DEF. NOT A CAKE WALK, BUT IT OFFERS A HOPE AT LIFE, AND HAS GIVEN ZOE THAT, AS WELL AS A QUALITY OF LIFE BETTER THAN WE EVERY EXPECTED.... ZOE WILL HAVE HER 3O + SURGERY IN NOVEMBER WHEN SHE HAS HER NEXT EXPANSION... THANKS FOR JOINING US, AND WE LOOK FORWARD TO HEARING MORE FROM YOU... GOD BLESS... | ||
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| Hollysmom |
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New User Posts: 3 | so we were told Holly has TIS....Great another syndrome to add to our list. | ||
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| mom2cole |
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 Elite Veteran Posts: 1155 Location: Orange County, CA | Hi Sorry late in posting but my son Cole had halo traction at 5 yrs old. He is now 16 yrs old so things may have changed over the years. He had this done after 2 spinal fusions and his spine continued to curve so they wanted to try halo, traction then rods (two surgeries within two wks). He did traction for the two wks btwn surgeries and had halo on for 3 months. It helped but not good enough as he continued to curve and affect his lungs,etc.. so he had veptr like rods placed at 7 yrs old thne continued with adjustments and finally final fusion/rods at 13 yrs old. He has had restrictive lung disease for years now due to the scoli and only has 30% lung function but you would never know it by looking at him or what he can do. He is all boy and loves all sports and participates in as much as can. He has been staying stable since last surgery in 2007 and the hope now is that no more surgeries will be needed. His is just monitored every 3-4 months by his pulminologist and if anything changes there where the Orthopedic Dr is needed we will address that with him at that time. Good luck with your new journey. Dont worry about another syndrome being added to list as these kiddos have alot and seems you seem to find something new all the time until they are older. Cole has many issues and most all due to the spinal curve as it affects the whole body and insides. | ||
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| Sadie |
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New User Posts: 2 Location: Utah | 21 days after my little Sadie turned 10, we took her to Primary Children's Hospital in Salt Lake City, UT. Sadie was diagnosed at age 1 with a 72 degree curve. Dr. Smith at the time wanted to do the surgery, but it was not FDA approved and I had a hard time thinking that my little baby would have to go through so many surgeries. For the last nine years we have done Massage and Chiropractic work. It wasn't until my Chiropractor talked to me and told me that as she starts to mature, her body will start to get worse. We made an appointmet with Dr. Smith and she came back with an 88 degree curve. That day we set up an appointment to have the Veptr 2 put in. It has been 16 days after her surgery and I think it has been the hardest 16 days of my life. To see your little one in so much pain. It makes me so sad. She was doing so good that we stayed in the hospital for 3 days, they released her early. I felt like I brought a new born baby home from the hospital and didn't know what to do with her. Up every 2 to 3 hours, walking, bathroom, and bathing her is all new to us. If anyone has experienced this, it would be nice to know. | ||
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| Zoes Nana |
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Expert Posts: 3970 Location: Plymouth, Pennsylvania | WITHOUT A DOUBT, THE VEPTR SURGERY, IS DEF. A TUFF SURGERY....AND 16 DAYS, I WOULD SAY YOU ARE AT THE 1/2 WAY MARK....EVERY DAY THINGS WILL IMPROVE... HOW MANY VEPTRS DID SADIE HAVE PUT IN? 3 DAYS IN THE HOSPITAL IS VERY LITTLE TIME FOR AN INITIAL IMPLANT?...HOW IS THE PAIN MANAGEMENT...? | ||
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| buggabear4494 |
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 Regular Posts: 91 Location: florida | Logan is 2 and just had his 1st veptr placed on dec 6th! he is thriving now! the VEPTR has done so much for him! he is now sleeping with no O2( which he needed 1 to 3 litters a night b4 surgery) we are still very careful with him although im not one to stop a tumble i am now watching him closer!(always thought kids learn better from experience and he cant learn if im hovering) and he is still getting his sponge baths hopefully after his stitches are removed on monday he can go back to his big boy bathes! Logan also has a trach and has coded 2x prior to veptr! we are hoping to get it out soon but will probally wait till he gets his second veptr placed next year! I WISH YOU GOOD LUCK AND WILL BE PRAYING FOR YOU! RESEARCH AND TRUST UR MOM INSTINCT! | ||
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| Carmell |
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 Expert Posts: 3243 Location: Utah | Hi Courtney - Welcome to you and Sadie. We also live in Utah and Dr. Smith has been Braydon's surgeon since birth. Braydon had a congenital scoliosis curve of 75 degrees at age 10 months old. At 11 months old Dr. Smith did a surgical fusion so the curve would not progress. At age 6, Dr. Smith helped us go to Texas (helped by doing lots of paperwork for us) so Braydon could have the VEPTR implant surgery. Braydon has been having VEPTR expansion surgeries for 9+ years with Dr. Smith. He is now 15.5yrs old. Braydon has a great attitude about life. He knows he has to have surgery and it's not easy always, BUT, having surgery keeps his quality of life well enough that he's very active and lives life to the fullest. Earlier this summer he joined the local chapter of the Civil Air Patrol. An Air Force sponsored group for teens who learn leadership skills and helping with emergency preparedness and learn about airplanes. Braydon LOVES airplanes and has always wanted to be a pilot. He is able to do everything they require except the distance running and some of the exercises. He does pushups with the best! Lots of upper body strength. Braydon loves to play golf, ride his bike (and now begin driving) go hiking in the mountains, etc. Being active is the best form of therapy for his body. He tells people that having surgery every 6-8 months is like taking your car in for routine maintenance. The better care you give your car, the longer it will last. The expansion surgeries are MUCH less invasive than the initial implant surgery. We live in Logan, so he usually stays overnight one night after expansion surgery. Then he goes home and is back to school or whatever activity within the week. I think having surgery as a 10 yr old is a little different than in a younger child. The younger kids don't fully understand what's going on, and they bounce back quicker (something to be said for youth). I'm sure Sadie is very in tune to her body and knows what differences there are from before surgery. It will take some time for her to get used to her new self. Once the surgical healing is done, I hope she sees that she can breathe easier, that she can have a better balanced torso and be stronger. We'd LOVE to visit with you. I'll send you a PM and give you my phone number if you ever want to talk. We love meeting new families and sharing some of our story, and learning about others and their experiences. Take care. Lots of deep breaths because this WILL get better. | ||
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| Sadie |
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New User Posts: 2 Location: Utah | Sadie had 2 Veptr Implants put in. She is now 25 days into her surgery. What a rough road this has been. Everyday she looks a little better. Thank you so much for everyones support. I felt like I had no one to talk to about this. | ||
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| Zoes Nana |
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Expert Posts: 3970 Location: Plymouth, Pennsylvania | CONTINUED THOUGHTS AND PRAYERS...KEEP US POSTED... GOD BLESS... | ||
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