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Thread: Surgery - Does it really take that long?

  1. #1
    Join Date
    Jan 2007
    Posts
    65

    Unhappy Surgery - Does it really take that long?

    Hi all,

    We have been to the hospital and done the prelim blood work and have to report to the O.R. at 6:00am tomorrow morning. The doctors told us today that Spencer's fusion surgery will be 8 hours long. I shudder to think of his little body (he only weighs 35 pounds!!) being put through that kind of trauma for that long. I know different surgeries take different lengths of time, and I can't articulate exactly what the docs are going to do (I'll get the details and let you know), but is 8 hours a long time for this kind of procedure? ....long Sigh....

    Anyway, if anyone is interested, we have started a blog where we will update his surgery and recovery. I dont know if the rules here allow me to post the web address, so if any forum admins or moderators read this, or if anybody else knows, let me know and I will post another reply with the address, if anyone is interested.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  2. #2
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Spencer's Dad,

    Good luck tomorrow. I will be praying for your little guy. I'm sure, like all these kids, he is a tough little fighter.

    I'm sure that when they said 8 hours, they were probably including prep time, etc. - from the time they wheel him in the OR to the time they wheel him out - but it is still a very long time I know. Hopefully they will keep you posted along the way (that was a big help to me). When my son had his stapling surgery, he too was around 37-38 lbs.

    Keep the faith. He will come through just fine. When David was in the OR, I had a lot of faith in his doctor, so I just kept telling myself that he was in the very best hands.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi...

    I'm sure that Spencer will be fine, even if it is 8 hours ofo surgery. These doctors and nurses are used to long surgeries, and will take excellent care of Spencer.

    Feel free to post your blog URL.

    --Linda

  4. #4
    Join Date
    Jan 2007
    Posts
    65

    Thanks

    Thanks Maria and Linda. I'm always amazed and inspired by how helpful people are to perfect strangers when they need help, even if its only a few kind words. Spencer's blog is at www.spencers-spot.blogspot.com if you are interested in seeing how things are going for him.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Thinking of Spencer and famly today.
    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/

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Since Robert has a lot on him mind, I thought I'd post his last update from Spencer's blog:

    Sorry about the long delay between updates. All the computers were being used and then things started to move really fast and I could not get back to the computers until now. The long story short is that Spencer is now in the PICU and we have been to see him. He looks great!!!!!! I'm sure he is at least 3 inches longer! And his rib protrusions are almost non existent. ----------------------- Anyway.........the long part of the story is that we have met with Dr. D'Astous and he told us that he was able to straighten Spencer to about 20 to 25 degrees. He said Spencer did not lose any significant amount of blood until they started penetrating the bone and then his bones were so delicate that they started to ooze and that is where most of his blood loss came from. They gave him the four units of volunteer blood and another unit of cell saver blood (his own recycled blood) so he lost more blood than Dr. D'Astous expected, but honestly it was less than I thought it might be. Still given his size that is a more than a complete replacement. Dr. D'Astous said that the rod placement went better than text book and he was really pleased with how the procedure went and the results he was able to achieve. They were able to extend the rod all the way up to include a part of the T1 vertibrae so this really is about the longest rod placement that can be done. Dr. D'Astous said that he wants to move Spencer back to Shriner's on Friday and we will finish our hospital recovery there, about 7 more days. --------------------- Spencer is now in a semi-comatose state and is on a continuous morphine drip for pain. Tomorrow the pain management team will asses him and probably start to ween him off the continuous. ------------- The PICU follows a very strict protocol regarding who they give information out to and cell phones are blocked so if you want to get a hold of us or have questions about Spencer, you will have to leave a message, post or comment, and we will call you back. ------------ The urology department got back with us and said that the unusual substance in his urine was all crystals. There was no bacteria, or anything else that posed an immediate problem, so it was just something very odd. They will do a renal/kidney ultrasound to determine if Spencer has stones or something like it in his kidneys, but they said there was no risk in doing the surgery today with this condition. They also said it is possible that the crystals could cause pain during urination and so that might explain some of his behaviour the past several months. --------------------- Other than that, Spencer knows we are with him and starts to cry when he hears our voices, but then goes back to sleep. He looks a little pale, probably from the blood loss, but really looks pretty good otherwise. Of course we have not seen his the wound on his back yet... The PICU said we could take pictures so as soon as I can find a place to upload them I will post them here.---------------- Thank you all for your support and prayers today. We could not have done this without you and your faith. This really could not have gone any better, and certainly could have gone a lot worse, so we are very thankful for the blessings and miracles we have experienced. Our Heavenly Father has been very generous with us today. --- Robert

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Thanks, Linda. They have been in my thoughts and prayers a lot these past few days and I appreciate the update.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  8. #8
    Join Date
    Jan 2007
    Posts
    65

    Smile Huge Success

    Hi all,

    Spencer's surgery has been a huge success as far as his spine is concerned. The docs were able to get his curve from 118 degrees to less than 25 degrees. He is so straight now. It is just amazing!!! His fusion surgery took about 5 hours and another procedure took about an hour so he was operated on for about 6 hours. He lost a lot of blood and so he looks puffy and pale, but otherwise he looks so good . He is in the PICU for the next couple of days. The goal for today is to ween him from the ventilator. The docs said they may have to decrease his pain meds to do this because they can suppress natural breathing, but that the overall goal was to get him breathing on his own with as little pain as possible. I told the doctor that was my goal every morning - to breathe on my own with as little pain as possible.

    Thank you all for all your help and support. Your prayers, kind words, and encouragement helped to ease the burden I felt while preparing for this surgery. Thanks Linda for keeping everyone updated while we were so busy. We will keep you posted.

    Robert
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  9. #9
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Tears are running down my face as I write this. What an absolutely terrific result. I am so very, very happy for you Robert, Spencer and all your family.

    God love his little heart and I know he does, will look foward to the updates.

    Much love
    Macky
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  10. #10
    Join Date
    Dec 2006
    Location
    California, Bay Area-ish
    Posts
    54

    Thumbs up Congradulations!

    It is so great that he is doing so well. It really is a true inspiration and I am so happy for you. I hope he starts feeling better soon, along with you and the rest of your family. You are all in my prayers
    Molly

    my name is molly
    i am 15 and a sophmore in highschool
    i got my back brace at age 13
    i should stop wearing it REALLY soon
    my curves are 38 and 43 degrees
    i've had scoliosis since i was 7
    my legs used to be uneven
    but now they look much more balanced!
    and hopefully my scoliosis will start to get better
    Oh, and i'm raising a lamb. her name is Violet and she's super cute!

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