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  1. #1
    Join Date
    Feb 2012
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    12 Year Old Surgery in 2 weeks

    Hello,
    I have been reading many posts on this forum and have found it so helpful. When I first started reading, my daughter was at 40 deg thoracic and 38 deg lumbar. She wore the boston brace as directed since last May. In Nov 2011, a check-up showed no change in her curves and we were so excited. However, she started having a lot of pain and in Jan I took her back in. Her curves had progressed to 52 deg and 44 and the dr recommended surgery. She is scheduled for surgery to fuse T3-L1 on March 23 and I have been researching what to expect. I am pretty clear on the procedure, but am still foggy on what the days following the surgery while still in the hospital look like. We are in Houston and she will be at Tx Children's Hospital, so I know I can stay there the entire time. I've read she will be turned every two hours and cannot eat or drink for 36-72 hours after. I've read many posts and am so impressed with how strong everyone is. As a mom, I am finding this really tough. I know everything will be ok, but I get choked up every time I think about it. Any advice or steering me in the right direction on what I should expect in the hospital (and after) would be so appreciated. Thank you so much.
    Heather

  2. #2
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    Hi Heather...

    Sorry to hear about your daughter. I'll leave most of the discussion to parents, but wanted you to know the one thing I'm sure of. This will be much harder on you than it is on your daughter. Watching your child in pain will be very difficult. But, you'll get through it, and hopefully put it behind you forever.

    Best of luck for a successful surgery and a quick recovery.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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  3. #3
    Join Date
    Mar 2010
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    Heather,
    My daughter also has scoliosis, as do I. But hers is mild as of her last checkup. She's grown now. I know this doesn't help your situation. But as a parent, I just wanted to offer my support and best wishes for you and your daughter.

    Rohrer01

  4. #4
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    Quote Originally Posted by rohrer01 View Post
    Heather,
    My daughter also has scoliosis, as do I. But hers is mild as of her last checkup. She's grown now. I know this doesn't help your situation. But as a parent, I just wanted to offer my support and best wishes for you and your daughter.

    Rohrer01
    Thank you for your sweet words and support.
    Heather

  5. #5
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    My son, who is 16 years old, has had multiple surgeries, not spine, since he was 7 months old. It is much worse on the mom. I have spent many hours waiting for him to get into recovery . God bless. You both will be in my prayers
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  6. #6
    Join Date
    Feb 2012
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    9
    Quote Originally Posted by LindaRacine View Post
    Hi Heather...

    Sorry to hear about your daughter. I'll leave most of the discussion to parents, but wanted you to know the one thing I'm sure of. This will be much harder on you than it is on your daughter. Watching your child in pain will be very difficult. But, you'll get through it, and hopefully put it behind you forever.

    Best of luck for a successful surgery and a quick recovery.

    Regards,
    Linda
    Thank you so much, Linda. Your words brought tears to my eyes, and made me feel better that I am not crazy for taking this so hard. Just wish I could trade places with my daughter.
    Also, sorry I posted on the wrong forum--I'll post on the adult one from now on!
    Have a great weekend!

  7. #7
    Join Date
    Jan 2008
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    NC
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    Quote Originally Posted by hmcc View Post
    Any advice or steering me in the right direction on what I should expect in the hospital (and after) would be so appreciated. Thank you so much.
    Hi Heather. This is tough but you and your daughter will get through this.

    What you mentioned about no eating/drinking until the gut wakes up is true. Some surgeons don't enforce that and the ensuing abdominal bloating is said to be worse than the surgical pain. I suspect that is why our surgeon was extremely strict about it. I consider it outrageous how some surgeons don't deal with it.

    And yes they will turn her from side to back to other side to back etc. every two hours.

    Beyond that it is hard to say what will happen as all cases are unique and surgeons have different ways of dealing with recovery. Here are things that happened with my girls but other surgeons definitely do things differently...

    Day 1 - surgery

    Day 2 (day 1 post-op) - stand and walk a bit, sit in a chair.

    Day 3 (day 2 post-op) - more standing and walking.

    Day 4 (day 3 post-op) - morphine pump out and switch to oral meds, more walking/sitting, eat/drink if gut sounds, catheter out and use bathroom.

    Day 5 (day 4 post-op) - more walking, more sitting, possible post-op radiographs, wash hair in bed maybe... this perks them up. :-)

    Day 6 (day 5 post-op) - Stairs and possible release from hospital.

    Here are the discharge instructions we were given...

    1. May shower 10-14 days after surgery. No tub baths until follow-up (at 6 weeks)

    2. Can remove wound dressing 1-2 days after return home. Steri-strips fall off on their own.

    3. Walk every day and go farther every time. Should be able to walk a mile before first follow-up (at 6 weeks). May need naps.

    4. Take script meds as needed. Also, extra strength Tylenol works fine and doesn't cause constipation.

    5. May go to school 3-4 weeks after surgery before you return for first follow-up. Carry no more than 10 pounds in a book bag held securely on both shoulders. Can use rolling bag also.

    6. No PE in school for 8-12 months. (Our surgeon released them for everything at 8 months.)

    7. Take over the counter iron tablets (ferrous sulfate or ferrous gluconate 325 mg once or twice a day) until you have your energy back.

    At 2 months - released for stationary bike, splash in pool (no swimming)

    At 6 months - Run on level surface, swim no dive

    At 8 months - resume PE and all vigorous activities.

    Heather, if your surgeon says anything different, ignore what I wrote and do what he says. It's just what our surgeon did. Some surgeons have no physical restrictions at any point.

    Good luck to you and your daughter, Heather. You will be stars. :-)
    Last edited by Pooka1; 03-08-2012 at 08:09 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #8
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    Feb 2012
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    Quote Originally Posted by Pooka1 View Post
    Hi Heather. This is tough but you and your daughter will get through this.

    Good luck to you and your daughter, Heather. You will be stars. :-)
    Thank you, Sharon. Your information is so helpful and I have read many posts/replies from you with regards to your daughters. I have never posted on anything, and am so thankful I did. Thank you to you and all of the ladies on this forum for sharing your experience with those of us who are just beginning this journey. I appreciate it more than you will ever know.

  9. #9
    Join Date
    Feb 2012
    Posts
    77
    Quote Originally Posted by hmcc View Post
    Hello,
    I have been reading many posts on this forum and have found it so helpful. When I first started reading, my daughter was at 40 deg thoracic and 38 deg lumbar. She wore the boston brace as directed since last May. In Nov 2011, a check-up showed no change in her curves and we were so excited. However, she started having a lot of pain and in Jan I took her back in. Her curves had progressed to 52 deg and 44 and the dr recommended surgery. She is scheduled for surgery to fuse T3-L1 on March 23 and I have been researching what to expect. I am pretty clear on the procedure, but am still foggy on what the days following the surgery while still in the hospital look like. We are in Houston and she will be at Tx Children's Hospital, so I know I can stay there the entire time. I've read she will be turned every two hours and cannot eat or drink for 36-72 hours after. I've read many posts and am so impressed with how strong everyone is. As a mom, I am finding this really tough. I know everything will be ok, but I get choked up every time I think about it. Any advice or steering me in the right direction on what I should expect in the hospital (and after) would be so appreciated. Thank you so much.
    Heather
    Hi Heather,

    Being a parent is the hardest thing. When our children hurt, we hurt, there is no question there. Just look to the future and how well she will do after this. Most of us here have also had scoliosis since we were young 12-13 and didn't/aren't doing anything until our 50s when problems start to arise. Your daughter will be spared of this. All the best to you both and will be in my prayers.

  10. #10
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192
    Dear Heather, so sorry you're going through all this. But the good thing is in just a few weeks you'll be on the other side and on the road to recovery. It is very hard as parents, we want to shield our kids from everything. However, sometimes all we can do is research like crazy, interview, pray & put our trust in the surgical team. Just as Sharon said, it will be harder on you emotionally. After you've done everything you can do to prepare, you need to turn it over to the skill & knowledge of the surgeon. If ever you start second-guessing yourself, think of how much pain she's in now & this amazing surgery is the fix for it. I'd get overwhelmed sometimes & have to start thinking of all the positives - good health ins, access to incredible drs, that he wouldn't have to live w scoli for years to come, etc. The timetable Sharon listed holds pretty true for us as well, tho Jacob walked day after surg, stairs day after that, released 4 days after surgery. First 2 days were in PICU, first night was brutal until they started giving a bolus, which I guess is an override every two hours on the pain pump of dilaudid. He did freak out a little with unexpected pain in his chest, which was a result of everything starting to shift around back to where it belonged.
    Your daughter will have medication to hopefull knock out most of the pain. Remember that those nurses have other patients to attend; some of the best advice I received before my 14-y-old's surgery was to set an alarm for every 3hrs 45 min to ensure that those pain meds were received on time; some nurses feel it's best to let patients continue to sleep - but it's so much harder to get control of the pain when you don't stay ahead of it.
    Also, preparation for hospital- a favorite stuffed animal, a memory foam topper for her bed at home but we also put it in the backseat for the ride home from the hospital - took the edge off all the bumps & corners. Pear juice if she won't drink prune juice - really encourage her to drink it, along w the meds they give to keep everything moving thru the bowels. Crackers & peanut butter crackers for when she can eat, as pain meds make one nauseous on empty stomachs. Soft jammies w button down tops, soft sheets on her bed. Also, expect for her to lose 10% body weight; we avoided that w daily shakes once we got home that were made w Ensure+ice cream, as well as lots of protein - he'd devour 4-5 scrambled eggs, which was out of the norm for him.
    Walking is huge, from the beginning, twice a day. We hated to see our son stoned on Oxycontin, which was the first painkiller for home. It didn't really do much besides that except take off the edge, then they switched him to hydrocodone which worked so much better. Off drugs at three weeks, now will rarely even take Tylenol. He himself figured out that walking -even just pacing around the house - loosened him up faster & better than popping a pill. He had lived w pain for a long time, & now two months out is usually not in pain. His shoulders will tighten up on him, but that tends to loosen when he does the exercises assigned from PT. PT began at 7 wks, when he went back to school. He's ok'd to swim, lightly start running if he wants, no PE/rollercoasters for a year. Feel free to pm me, look at Elias's journey, there are some amazing people on this board who have walked this road before us & they have had wonderful outcomes & are there willing to talk. Best of luck,
    LeighAnn
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  11. #11
    Join Date
    Jan 2008
    Location
    NC
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    Quote Originally Posted by LSKOCH5 View Post
    The timetable Sharon listed holds pretty true for us as well, tho Jacob walked day after surg, stairs day after that,
    Oh sorry I was unclear. Day 2 is the day after surgery. Day 1 is the surgery day. I was referring to days in the hospital, not days post-op. I see how that is confusing though. :-)

    Both my kids and I think almost all testimonials I have read have the kids walking the day after surgery.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
    Join Date
    Feb 2012
    Posts
    9
    Quote Originally Posted by rockycarm View Post
    Hi Heather,

    Being a parent is the hardest thing. When our children hurt, we hurt, there is no question there. Just look to the future and how well she will do after this. Most of us here have also had scoliosis since we were young 12-13 and didn't/aren't doing anything until our 50s when problems start to arise. Your daughter will be spared of this. All the best to you both and will be in my prayers.

    Thank you for your prayers and your encouraging words. What a good reminder to look to the future--I seem to have planted myself here--where I am anticipating that 4 hours when my daughter is in surgery. Your prayers are so appreciated.

  13. #13
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    Quote Originally Posted by hmcc View Post
    Thank you for your prayers and your encouraging words. What a good reminder to look to the future--I seem to have planted myself here--where I am anticipating that 4 hours when my daughter is in surgery. Your prayers are so appreciated.
    I assume you will have someone waiting with you in hospital, yes? It's good to have someone to talk to if you want to talk.

    For the first kid, it was our family (twin sister, my husband and myself) there at the hospital and that was hard waiting. I was so relieved when the surgeon came in and said everything was fine that I couldn't speak and just shook his hand.

    For the second kid, her twin was getting over what we think was H1N1 and so could not come to the hospital to wait with us. She was okay except still taking her third course of antibiotics for the ensuing bronchitis. We dropped her off at school and then my husband and I took the second kid to the hospital. I waited as long as I could until I had to leave to pick the first kid up from school. I was okay leaving the hospital because my husband was still there and it gave me something to do. I was much calmer for the second kid after seeing the recovery and result of the first. It turns out I just missed the surgeon when I returned to the hospital.... I was on the phone with my husband as I saw the surgeon walking out.

    It's interesting that while I got calmer and more accepting with the second kid, my husband seemed to react oppositely. He seemed mad as hell that both kids needed surgery and it came to a head with the second. He did not want to leave the hospital at any point with either kid.

    The surgeons can handle this. That's all I care about. It's not like it can't be fixed. Life is unfair. Bad things happen to good people. What can you do? I optimize within the situation if I can't change it. I play it as it lays.

    You will get through this and I predict you will be amazed at how fast the recovery is and how your daughter gets on completely with her life without looking back.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #14
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    NC
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    Oh hey I forgot an important point... we had no choice. Surgery was clearly the only option. When you have no choice, there is cover. It would not have been rational to second guess no matter what happened.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #15
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192

    Surgery next week

    Hi Heather - Hope you've been finding some peace in preparation for surgery next week. You & your child have been in my thoughts & prayers. Just rest assured that these surgeons have quite a gift - the brilliance of scoli surgeons truly blows my mind. Your baby will be on the other side of this before you know it, & you'll both be walking down the path with your back away from the scary, back into normal life. You'll be amazed at the progress every few days. We were at the surgery stage 10 weeks ago, & I swear I felt literally hundreds of people supporting us from here on the boards, from church, family, friends. You are so fortunate to be able to provide the means for your child to have a great quality of life after recovery. Just be her advocate in the hospital w pain & meds, keep her nourished & hydrated, & take it as a different way to bond w her. I can't exactly express what I mean by that, but my son & I became so very close w it all & have a relationship that is better than ever. Best of luck to you! And keep us posted.
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

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