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Thread: update on khyler

  1. #1
    Join Date
    Mar 2006
    Posts
    29

    update on khyler

    hey everyone the doctor called me back yesterday after they had spinal conference everyone agreed Khyler is a canidate for veptr but they want to check out his lungs first there going to do a ultrasound on his diaphram and he will see a pulmanoligist for a consult. he is also having a sleep study to determine if there is any damage to his lungs already before they go ahead with the veptr. they want to make sure he's healthy enough for the surgery.
    if there is lung damage then they reccomend he go ahead with the growing rod.........hopefully there isn't
    Corina

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Corina,

    I'm so happy to hear progress is being made! I think you are in good hands. Hopefully the lung studies will show good things for Khyler's lungs. PLEASE let me know if I can help in any way. I know Gail has helped you - she's great! Take care and I look forward to more updates.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    corina,

    what fabulous news! progress! yeah! you sound like you are going to have a very busy time of it, but understandable since the orthos want to make sure they know as much as they can before this surgery. i really, really hope that it's the veptr and not growing rods. i am not well versed enough to understand why they would do the growing rods over the veptr especially if there is any lung damage. i thought that was the whole purpose of the veptr was to address thoracic insufficiency syndrome. i'm sure that carmell knows, and i'm really interested . . .

    of course, if i can help in any way, please let me know. i really enjoyed speaking to you a couple of weeks ago, and i'm soooo happy that you guys are no longer getting the run around!

    my best,
    deshea

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Deshea,

    The likely reason they wouldn't be able to do VEPTR on Khyler, if he has lung issues, is that the VEPTR requires a good, functioning diaphram. If Khyler doesn't have the support from his own body to compensate for the added lung space (after VEPTR implant) then it won't do any good to have the implants done. His own body needs to be able to work WITH the devices. That's a very simplified answer, but I hope it helps.

    The growing rod procedure would be a second choice because it would (in theory) stablize the weak spine. It will not address the lung issues. His lung issues would continue to be something to work with.

    Ideally you need good strong support in the chest/lungs to support the VEPTR procedure (chestwall device). I'm hoping that Dr. Do (and the other docs) consult with either Drs. Emans or Smith. These guys have perfected the pelvic attachment device to a point where they have had great success in patients who other docs wouldn't know how to help. I just wonder if there are other options than the original design of the VEPTR (Braydon has the "original").

    Good question! Hopefully satisfactory answer.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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