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  • Surgery in just over 24 hours

    Tomorrow morning at this time I will be preparing my daughter for the trip to the hospital. Some moments I feel like we are all prepared, aside form needing to pack our bag. Other moments I found myself terrified and wondering what I am forgetting or stressing about what could go wrong.

    Find it so hard dealing with her having to have this. Her strong desire to feel normal. She is 12 now and knows that she does not look like other kids. She constantly asks if this will make her look more normal, whether her clothes will finally fit like they are supposed to. I am so hopeful that this will give her some of her confidence back.

    I also worry or beat myself up because I am taking a child that feels no pain right now and willingly subjecting her to pain. In the end I know it should be worth it, but it still feels wrong. Have others dealt with this?

    If there is any last minute suggestions for things to pack, do, prepare for..etc. Please, feel free to let me know. I follow all your stories as much as I can and am always so happy to see the progress you have made. Getting valuable info from those who have walked before us is appreciated.

    Thanks....
    Jules


    Mother of Khya, diagnosed 2 weeks ago with a thoracic curve of 61*. Hoping to have surgery this Sept at Emanuel Children's Hospital.

  • #2
    Originally posted by purplepixie View Post
    Tomorrow morning at this time I will be preparing my daughter for the trip to the hospital. Some moments I feel like we are all prepared, aside form needing to pack our bag. Other moments I found myself terrified and wondering what I am forgetting or stressing about what could go wrong.

    Find it so hard dealing with her having to have this. Her strong desire to feel normal. She is 12 now and knows that she does not look like other kids. She constantly asks if this will make her look more normal, whether her clothes will finally fit like they are supposed to. I am so hopeful that this will give her some of her confidence back.

    I also worry or beat myself up because I am taking a child that feels no pain right now and willingly subjecting her to pain. In the end I know it should be worth it, but it still feels wrong. Have others dealt with this?

    If there is any last minute suggestions for things to pack, do, prepare for..etc. Please, feel free to let me know. I follow all your stories as much as I can and am always so happy to see the progress you have made. Getting valuable info from those who have walked before us is appreciated.

    Thanks....
    Jules
    Jules,

    I know firsthand that the anticipation is horrible. For myself I was counting the days & hours down with dread. I don't have any experience with one of my kids having this surgery, but a friend of mine's 13 year old daughter had surgery the end of the summer and was fused 6 or 7 levels. She is doing fantastic, and started school on time. Many of her friends aren't even aware of what she went through. This girl was off all narcotics in just a few weeks.

    The young ones usually snap back really quickly. Good luck to you both, and you'll be in my thoughts.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

    Comment


    • #3
      Your daughter and yourself will do just fine. You are most likely way more prepared than you need to be and if you are like me, you probably won't even touch anything that you take with you. Stay strong and stay positive - you are almost there.

      I'll keep you in my prayers and await your post-op posts (when you are ready).

      Hugs,
      ValleyGirl - age 54

      Diagnosed @ age 11
      Milwaukee brace 1967-1971 -- hated it!
      Never rechecked since 1971 until "tweaked" something in lower back in July 2008.
      Now curve is T38*, L53*
      Surgery scheduled for 9/8/09


      Fused T10 - S1 on 9/8/09

      Comment


      • #4
        Jules,

        You can handle this. Your daughter can handle this.

        Your surgeon can fix her. With the new instrumentation, he will be able to de-rotate her to a great extent if that is what is causing your daughter concern in how she looks.

        My daughter had a similar curve (58*) to your daughter's (which I'm assume is very rotated based on your comments). She look and feels completely normal and was glad to have the surgery.

        In re pain, my daughter only had pain after the decision to have surgery, shortly before the operation. So we pulled the trigger with no pain as you are doing. Surgery was not really a choice for us as the curve had been moving for 5* a month for at least 5 months. So it was easier on everyone because of the no-choice aspect... no real weighing the options necessary when you have only one hope... fusion.

        Kids bounce back relatively quickly. It's going to be a hard several days but then she will improve rapidly I predict.

        My other kid will be fused on 6 October. After helping the first kid through and seeing the recovery and result, I am not so much worried at this point as hoping to just get this stuff behind my kids so they can get on with their life already. I am very much looking forward to the surgery in that sense.

        Good luck.
        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."

        Comment


        • #5
          Hi Jules

          I'll keep you and your daughter in my thoughts and prayers. I don't have any children but can only imagine how difficult this must be for you.

          For my recent scoliosis surgery, I ended up sending everything I had packed, including all valuables, home with my partner. The hospital provided everything I needed - hospital gown, which they changed daily, tooth brush, tooth paste, brush, etc. I'm assuming that this will be the same for your daughter.

          I'm sure you will both get through the surgery just fine.

          Cheers!

          Karen
          Karen, 66 years "young"
          Polio at 6
          Diagnosed with scoliosis at school; no treatment
          Lumbar curve in 2005: 40; moderate pain
          Lumbar curve in 2009: 55; pain severe
          Lumbar curve after surgery: 21
          Surgeon - Dr. William Lauerman, Georgetown University Hospital, Washington, DC
          Three surgeries in one week:
          8/24/09 L3 to S1 anterior spinal fusion with Harm cage
          8/28/09 Posterior spinal fusion from T10 to S1 with instrumentation
          9/1/09 Partial revision of instrumentation

          Comment


          • #6
            Jules:

            Tomorrow will be a long day, but once you are on the other side of surgery, time will go quickly.

            Be prepared for lots of swelling post-op (not all kids swell, but many do, and mine did), and don't let it scare you. It will subside quickly. You'll be surprised at how quickly your daughter will gain every day.

            My son (who also had no pain until right before surgery) had a long fusion on a big curve at age 13 nearly a year ago. He is one of those kids who was off all pain meds in about 2 weeks (not common, but it does happen), and like most, he was back in school at one month. It's hard to believe it has been 10+ months.

            I think your concerns are quite normal, but I also think you know you are doing what's best for your child. Soon you'll be concerned only with attending to her needs as she recovers. Don't forget to take care of yourself!

            We'll be thinking of you and rooting for you both tomorrow. Keep us posted.

            Mary Ellen

            Comment


            • #7
              I am praying for you both and very excited for you to nearly be on the other side of surgery.


              Donna.
              Mother to 14 year old daughter, Gabrielle (Gabby).
              Discovered her scoliosis on her 14th Birthday in February 2009. Due to be operated on for curves of 57 and 54 degrees (S Curve) in December 2009 with Dr. Askin in Brisbane.

              Comment


              • #8
                Good luck Jules and Khya. I've said it before, that there seems to be one thing worse than facing this surgery yourself, and that's if you have a child facing it. I really feel for the Mums and Dads.

                Khya's going to look great in her new clothes, in a very short period of time!
                Surgery March 3, 2009 at almost 58, now 63.
                Dr. Askin, Brisbane, Australia
                T4-Pelvis, Posterior only
                Osteotomies and Laminectomies
                Was 68 degrees, now 22 and pain free

                Comment


                • #9
                  Jules,

                  Tomorrow will be the longest and hardest day in your life. My son was in surgery for 7 1/2 hours. I thought he would never get out of there. Please remember to take care of yourself while your daughter is surgery. Please make sure to eat and drink during that time, you will need all the strength you can muster up afterwards. Just know that you are doing the best thing for your daughter. I will keep you in my prayers.

                  Christine

                  Comment


                  • #10
                    Best Wishes.....good luck to you both.


                    Lynn
                    Lynn -30.... something
                    DxD @ 8 yrs old: 10* curve-no brace-no nothin'!
                    At age 26: Thorasic 48*/Lumbar 50*
                    At age 34: Thorasic 58*/Lumbar 60*
                    Posterior T5-L4 Fusion Jan 14th, 2009 w/Dr Tribus
                    UW Madison, WI Hospital
                    **AFTER: less than 10* Thorasic/15* Lumbar**

                    Comment


                    • #11
                      Good luck Jules and Khya. I've said it before, that there seems to be one thing worse than facing this surgery yourself, and that's if you have a child facing it. I really feel for the Mums and Dads.

                      I stole your post Jen, as I feel the same exact way.

                      Ed
                      49 yr old male, now 63, the new 64...
                      Pre surgery curves T70,L70
                      ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                      Dr Brett Menmuir St Marys Hospital Reno,Nevada

                      Bending and twisting pics after full fusion
                      http://www.scoliosis.org/forum/showt...on.&highlight=

                      My x-rays
                      http://www.scoliosis.org/forum/attac...2&d=1228779214

                      http://www.scoliosis.org/forum/attac...3&d=1228779258

                      Comment


                      • #12
                        I want to thank you each of you for your kind words and prayers. I would have responded sooner but I didn't know there were responses. I have hope and faith that she will do fine, and I appreciate you all thinking of us.

                        Counting the hours now till I wake her to go. Thankfully I have friends meeting me there to help keep me distracted.

                        You are all right, our kids are strong, I think far more resilient than I give them credit for. And yes, there is nothing worse I know of than seeing our children go through this. Though for those who went through it themselves on here it must have also been the same. You are all amazing. To take the time to encourage and support others. We are truly blessed to have such wonderful people to share this journey with.

                        And to Pooka1, I know you have traveled this road before. Still my thoughts are with you and your daughter. I hope your surgery on the 6th is a breeze and you get back to the normal, happy days of their growing.

                        I have internet at the hospital so I shall try and post updates as I have them. As well if I have questions that are not answered I know where to turn.

                        Thank you all so much.
                        Jules and Khya


                        Mother of Khya, diagnosed 2 weeks ago with a thoracic curve of 61*. Hoping to have surgery this Sept at Emanuel Children's Hospital.

                        Comment


                        • #13
                          Hi Jules,you are probably at the hospital at this point, just wanted to also let you know your daughter is on my prayer list for a speedy healing and back to her normal routine very soon!
                          Dolores A
                          June 4, 2009 Anterior L3 - S1
                          June 8, 2009 Posterior T4 - Pelvis
                          Mark Agulnick, MD FAAOS
                          NY Spine & Scoliosis Center

                          Comment


                          • #14
                            Surgery went well!

                            She made it through surgery with flying colours! Was certainly the longest day of my life, but finally got to see her and it was wonderful. Has been a bit of a bumpy road, though not nearly as bad as I thought it would be. Biggest thing seems to be pain management and keeping her breathing under control.

                            With any luck we will get sprung from PICU today and get a bed on the regular ward. Thankfully the PICU is flexible with who they allow for visitors, so family and friends have been able to come see her.

                            Hoping today continues to improve. Shall write back as I have time. Thank you all for the kind words and prayers. They worked, and I am grateful.

                            Jules


                            Mother of Khya, diagnosed 2 weeks ago with a thoracic curve of 61*. Hoping to have surgery this Sept at Emanuel Children's Hospital.

                            Comment


                            • #15
                              it is all healing from now on...khya will do well, & the more healing she does the happier you will be with your decision...your daughter is in my thoughts & prayers, & in those of many others...take care of yourself so you can take care of khya..may she be blessed with a happy, healthy & pain free life!

                              jess

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