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Thread: Final Fusion July 24th

  1. #1
    Join Date
    Dec 2005
    Posts
    40

    Final Fusion July 24th

    Hello
    My son, Cole, is scheduled to have final fusion surgery with hardware July 24th and I would like to hear about surgery/hospitalization/recovery time info for other kids Cole's age-he is 13 yrs old. He is to be fused from T2-pelvis or right before. He was born with severe congenital scoliosis and has already had 9 back surgeries. He has had fusion twice b4 at 18 months and 3 1/2 yrs old but not so much on the spine plus some was cut out when he had a halo and rods inserted later on. One fusion was from T4-T10. Both times he had the fusion he had a torso cast on for approx 3 months but the Dr is not sure yet if he will have cast or brace or what yet. He said he will know alot more about details while in performing the surgery and can really see what is going on in there.

    I am curious as to if kids his age have had to have the cast or a brace or anything to hold the curve for awhile after surgery? Also, what was the recovery time like once home from Hospital? We have been told he will be in the Hospital for 9-10 days with some of the first few days in ICU and incubated (on a vent). We have been thru surgeries many times before but none exactly like this plus he was much younger when had the fusions so I would wonder if this age things will be different. Will he be able to move around once home (to a point that is). Like how long until they moved more? Anything you can give me on info would help. Thanks!
    Stacey
    So Cal
    Surgery at CHLA

  2. #2
    Join Date
    Apr 2007
    Posts
    7

    Hi Stacey

    I dont have any advice for you as I am a newbie to this but I just wanted to let you know I've been thinking of you and will pray for your family and Cole as he goes through surgrey next week. We will be in CHLA on August 2 for Emma's preop so I wukk check in with Janet to see if you might be around. Heres praying all goes well!

    Joanne

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Stacey,

    You already know my thoughts and experiences, but I just wanted to tell you and Cole again that we will be thinking of you next week. July 24 happens to be a state holiday here in Utah, so we'll be celebrating with Cole with many fireworks shows (hazard of being in the fireworks business - hehe).

    You also know that Cole can't be compared to most teenagers having traditional scoliosis surgery. His history just doesn't allow for that. He will be intubated where most kids aren't (for a length of time post-op). His doc will likely be more conservative with his recovery because his surgery will be huge and invasive. I know this waiting and anticipating the surgery is the hardest (you know this too). I hope you find peace in your heart from other families' experiences and from as many people as you can. You are doing great.
    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/

  4. #4
    Join Date
    Dec 2005
    Posts
    40
    Thanks Joanne. We may very well still be at the Hospital on Aug 2nd so maybe we can meet. I am pretty sure it is the 6th floor that Cole will be on after he leaves ICU so feel free to come find us or call the room and we can see how to meet up. He is suppose to be in the Hospital for 9-10 days.

    Thanks Carmell. How cool, fireworks on the 24th, I will tell Cole-he will think that is so cool too. You are in the fireworks buz huh? How neat. My bf has helped a friend do fireworks shows before on the 4th and we have gotten an up close and personal view of them - way cool and fun!

    I know you are right that cant really compare to others but just thought it would be nice to know some others history as yes this waiting and anticipating is very hard. Even when we been thru it so much like you too, it just doesnt get easier does it. I have great faith in Skaggs and CHLA as he has always done a great job before. Just so looking forward to this being over with. I am a bit nervous about it all.

    Thanks alot for your kind words.
    Stacey

  5. #5
    Join Date
    May 2005
    Posts
    672
    Hi Stacey,

    I want to wish Cole and you the best on the 24th. You certainly will be in my thoughts on that day.

    I know Joe and Cole's experiences won't be the same, but to give a general idea; Joe was fused from T4-L4, he didn't require a brace or cast. He was in the hospital 7 days. When he came home, he was able to walk around a bit & was able to walk up and down stairs but for the most part was laying in bed. He needed to be helped in and out of bed for about the first 2 weeks. By the third week he came off the pain meds and really seemed to perk up. He didn't have much of an appetite the first couple of weeks and stuck mainly to applesauce, yogurt, eggs, smoothies, soup...he was also getting up and walking around a bit more, and was able to sit up for longer periods. By the sixth week, he was able to return to school though he would be very sore by the end of the day.

    I hope this was somewhat helpful. This is definitely the hardest part right now. I will be happy to try and answer any questions you may have about the procedure, recovery, etc. Feel free to e-mail if you want - rdomenici@cox.net.

    Take care,
    Renee

  6. #6
    Join Date
    Dec 2005
    Posts
    40
    Thanks Renee. Even tho all kids experiences are different it still helps to hear how others who are about the same age and having a semi similar procedure done have recovered,etc.. I cant recall did Joe have any hardware installed? We saw the Dr at Pre-Op Thursday and he said most likely Cole will not have a brace or cast but wont know for sure until surgery or there after. Cole will have at least one of his rods removed and replaced. He is not sure about the other rod until during surgery. He says 1-3 days in ICU and probably in Hospital approx same as Joe. I know they are usually in around a week or more (7-10 days). it just depends on how Cole does after surgery. I remember all that. I am a bit concerned about school as it starts 5 wks after surgery (it starts a wk earlier then usual this yr and I didnt know that when booked the surgery date). If he cant go the Dr will give me a note plus I have already been in contact with the school and his IEP manager. I just have to contact them when they come back right b4 school starts and let them know how he is doing. He may start half days as I hate to push it. He cant do sports or PE for 3 months so already need a note for that.
    Thanks again for help. I hope Joe is doing well.
    STacey

  7. #7
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Hi Stacey,

    My son, Alexander, had spinal fusion surgery on July 12th. I am working on a long post describing his progress so far. His situation sounds very different than your son's though. This was Alexander's only scoliosis surgery (I hope for ever). It's been very difficult but he seems to be recovering well, for the most part. He was in the hospital for four days after the surgery. He did not need to be in the ICU or to be intubated, although he did need oxygen going into his nostrils while he slept the first couple of days after the surgery.

    He has not needed a brace since the surgery which was great since he wore one for almost four years prior to our decision to have the surgery. He was able to move his body right away after the surgery. The PT had him sit & stand the day afterwards although he was half asleep & dizzy during that activity. He's been walking a little bit move each day, esp. since we've been home. He is still on oxycodone & tylenol but I've been able to reduce the doses a bit. He is eating a little more each day.

    I hope that Cole's surgery goes really well on Tuesday & that he has a quick recovery. If you have any questions, please email me & I will try to answer them. Good luck with everything & I will be thinking positive thoughts about you guys.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  8. #8
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Thinking of you and Cole today and tomorrow. Hopefully he'll have a nice, relaxing swim tonight, and be ready for his big day tomorrow. Take care and know we'll be thinking of you throughout the day.
    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/

  9. #9
    Join Date
    Sep 2005
    Posts
    877
    The best of luck to Cole. We are all praying for him to do great.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

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