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  • Sheena's still in the hospital

    Hi All

    Thanks for all the kind wishes and prayers. We're still in the hospital. Sheena's surgery went well. Her correction is excellent, I don't know the numbers yet. There's still some rotation in her lumbar curve, but the thoracic looks almost perfect. I know she's grown at least 2", perhaps almost 3", the nurse told me 2 different things so I'll measure her when we get home, but she's definitely much taller than me now (not saying much as I'm only 4'11") but the difference is startling.

    Her recovery has been typical of everything I've seen on here so far except that she's experiencing significant hip pain that they can't explain and also having trouble eating. They went ahead and started her on percoset anyways in hopes that she can get completely off the morphine. They took her off continuous morphine yesterday and she had a very rough night. The problem is she would wake up every few hours in severe pain and it would take an hour to get it under control. I hope today the oral meds will help. If all goes well, she'll be discharged tomorrow and we'll fly home on Thanksgiving day. She's much better as far as getting out of bed and walking, at least that part of the recovery is going well. I'll post again when we get home. If any one has any thoughts on the hip pain I'd be interested in hearing them.

  • #2
    Hi Sherie,

    I haven't been able to stop thinking about you and Sheena! I was so excited to see your post. I am so glad to hear that the surgery went well and that she is on the road to recovery. Her correction sounds amazing! I'm sure that these have been some really difficult days for your family but the worst is over. What a huge relief it must be to have the surgery behind you. Big, big hugs to you and Sheena. Your Thanksgiving will certainly be extra special this year!

    Best wishes for a speedy and smooth recovery! I look forward to hearing from you.
    Lori

    Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
    Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
    Dr. Flynn is an AMAZING surgeon!

    Comment


    • #3
      Sherie,

      Congratulations. I have been thinking about you and Sheena all week. I am so happy for you both. I don't know anything about the hip pain. I know Nicole ate practically nothing until she was at home and off the major medicine. I am sorry for all the pain. What can I say? Nicole was also in a lot of pain. But it is all temporary. I wish you and your family a wonderful Thanksgiving. I hope that each day gets better for Sheena and that she is out of pain very soon.
      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

      Comment


      • #4
        Sherie,

        That's awesome Sheena's surgery went well.

        I whine about my back, but you parents who are watching your child live this ... it's impossible to express the respect I have for your strength.

        Please keep us posted, and I hope you're both back to the comforts of home soon!

        Best regards,
        Pam
        Fusion is NOT the end of the world.
        AIDS Walk Houston 2008 5K @ 33 days post op!


        41, dx'd JIS & Boston braced @ 10
        Pre-op ±53°, Post-op < 20°
        Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


        VIEW MY X-RAYS
        EMAIL ME

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        • #5
          Hi Sherie,

          I'm happy to hear Sheena's surgery went well and that she's on the road to a great recovery. Did they use bone graft from her hip for the fusion? If so, that's probably why she has pain. I've heard many scoli patients say the hip pain is worse than the spine pain. If she didn't have a hip graft, I hope its just a difference in her balance, and the soft tissues are being stretched a lot, and that it will go away soon.

          Also, I hope they are giving her stool softners, at least. Constipation can be a huge problem. If she's constipated it can cause several issues - she won't feel like eating (her abdomin is full of stool), the pressure from the impaction can push on the spine/incisions and be painful, it can cause bladder spasms which are painful, etc. It all adds up to pain. Please make sure she's drinking plenty of fluids and taking something orally to keep her from becoming constipated.

          Good luck and travel home safely.
          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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          • #6
            Sherie:
            So glad to hear from you - I kept logging on hoping to see a note from you. Sorry to hear Sheena has had so much pain - hopefully this will stop or at least be bearable really soon. Will keep praying things go well for you all.
            Ruth
            Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

            Comment


            • #7
              Hi Sherie,

              I'm so glad to hear that the surgery is over & that Sheena's spine is so much straighter. Those first days after the surgery were very painful for Alexander but now he doesn't even remember it. He also didn't eat much in the hospital & felt nauseated every time he tried to eat. They had to give him anti-nausea pills fairly regularly for a few days; I got a prescription for them to take home but he only ended up needing to take one pill at home. As soon as we lowered the oxycodone to 5mg (from 7.5mg), he was able to start eating more normally. I wouldn't worry too much about her food intake, just make sure she's getting enough fluids (I'm sure the nurses help with this).

              I hope Sheena's hip pain goes away soon, as her back heals & that pain also diminishes. I'm sure she'll feel much better over the next few weeks but I know how excrutiating it is to watch your child suffer. Alexander has had no pain now for a long time. It seems very brief for these kids, esp. compared to how I've read the adults feel after their surgeries.
              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.

              Comment


              • #8
                Hi Sherie,

                I've been anxiously waiting for a post-I am so happy and relieved everything went well with the surgery. I'm thinking the hip pain may be from the bone and muscle being straightened/forced into a new position. Did she have much hip unevenness before surgery? Joe had a hard time with pain control too, he also experienced a lot of dizziness when walking & standing. I think it was part meds and part his body adjusting to a new center of balance. Hopefully you will notice the pain diminish a little every day. He didn't really eat in the hospital either, no appetite. Things will get better, it really makes a difference once they are back home. Hope you have a safe (and undelayed) flight home. Happy Thanksgiving to you, I'm sure your family is counting blessings!

                Take care and God bless,
                Renee

                Comment


                • #9
                  I hope you are ready and can go home today or tomorrow. All the advice abouve was helpful. We had to still deal with pain about a week after we came home. Eating well didn't return until about then too. I emailed you, and hope you have a safe trip home. Happy Thanksgiving
                  Shirley
                  Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

                  Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

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                  • #10
                    Sheena was discharged today! It's such a relief. We're staying at the hotel one more night and flying home tomorrow. She made a huge turnaround today when they put her on oral pain meds and took the morphine away. This is what Dr. Lenke wanted to do 2 days ago, but the pain management team was responsible for pain control and they wanted her to be able to hold down a clear liquid diet. So yesterday we made her eat some jello and broth which upset her stomach and it went downhill from there. She was in extreme pain all day yesterday with her hip and stomach. At night, they gave her a laxative to drink and she vomited while standing up which caused her to lurch over and pull her back. She was truly in intolerable pain, I can't even describe how hopeless we felt. She was so exhausted from the pain that she said she wanted to die. I knew it was going to be tough, but I never expected this! Anyway, this morning, they finally got it under control and she improved by the hour. When she asked for her drawing pad, I knew it was going to be ok. Despite all this, we are very happy with the care we received, everyone we came into contact with were so nice and caring. The nurses were exceptional, Dr. Lenke was wonderful and he did such a great job on her back. I can't wait for her to feel well enough to really appreciate how nice she looks.

                    Sorry this is one big run on paragraph but I'm still recouping from the past few days.

                    Thanks again to everyone for your advice and caring. We're still not sure about the hip pain, it's still there but not as severe. I think it is either from the drains or the manipulation, she had a lot of hip uneveness. I'll post pict. when we get them from the nurse.

                    Happy Thanksgiving!

                    Comment


                    • #11
                      Sherie:

                      Oh how awful that the pain got away from the medications and caused Sheena such distress. I can't even begin to understand how that must have made you feel.

                      About the hip pain - yesterday when Esme was having her structural integration treatment her therapist was talking about someone who'd had the spinal fusion surgery and how she had helped them afterwards with the pain involved in the muscles/bones getting used to their new position. Just a thought, for when Sheena is stronger, that there may be some natural therapy out there if the pain doesn't go away.

                      Thinking about you both often and hoping things only continue to improve.

                      Ruth
                      Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                      Comment


                      • #12
                        Hi Sherie,
                        I'm so glad to hear that Sheena has been discharged and that her pain has finally gotten under control. I'm sorry that she has had such a hard time with the pain. I can't think of anything worse than watching your child suffer. Hopefully when she is well enough to appreciate how beautiful her new straight back looks, she will feel it was all worth it.

                        Big hugs to you both and know that I am thinking of you and praying for a speedy, pain free recovery!

                        Happy Thanksgiving!
                        Lori

                        Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
                        Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
                        Dr. Flynn is an AMAZING surgeon!

                        Comment


                        • #13
                          Sorry to hear Sheena had such a rough day, it's hard to see your child in such pain. Glad to hear she's well enough to go home. Have a nice, quiet, restful day and a safe flight home!

                          Happy Thanksgiving,
                          Renee

                          Comment


                          • #14
                            Sorry to hear she had a rough time! Amanda had one real bad day at the hospital, but she did get better and Sheena will too! Anxious to see the x-rays. It sure is nice to see them with such nice posture! It's almost much more noticable than I realized.
                            Shirley
                            Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

                            Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

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