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  • #76
    hi pat
    thanks for writing. Glad to hear everything is going great. It's scary when they say they can basically do anything they want.
    well stay in touch
    jennifer

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    • #77
      Nikki,

      So glad to hear from you. My heart is with you these next few days. I know you know this, but stay on them about pain manegement. If Chrystal feels more than a twinge, especially if you see it escalating (her voice will go up an octave and she'll have that pinched look) insist on talking to the pain management team. I had to be pretty aggressive at times when I could see my daughter suffering. Once she was off the PCA and on oral medication, they authorized 2 vicodin every 4 hours, but a max of 8 pills a day. That meant she was maxed by 4 in the afternoon, and wasn't allowed another pill till midnight. I got them to split up the narcotic pain reliever and the Tylenol, so we could do Tylenol every 6 hours, and the narcotic every three to four if she needed it. There's always a solution, you just have to bug them sometimes. Anyhow, hang in there, and please know that I'm thining of you and Chrystal.
      Susanna
      ~~~~~~
      Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

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      • #78
        Susanna,
        The pain management team here has been great. The nurses tell me about 20 minutes before they want to do any moving with Crystal. That way I can get her woke up and she can push her morphine button. If they are going to be doing a big move with her they automatically give her an additional boost of morphine. Her morphine level was reduced today and she still isn't using the button very often. Tomorrow will be another day though, as they are going to start weaning her off the morphine and go to oral meds.


        Her brace will be ready tomorrow morning, so they may start getting her out of bed. She got to sit up today and felt much better just sitting on the edge of the bed.

        How is Grace doing now that you are home? Crystal may be out of here as early as Saturday, at the rate she is recovering. I don't know where she got the strength and power from, but she is determined to not let this get her down.

        I have everyone in my prayers. We are all surviving this. I didn't think I would, but I did.

        I saw Crystals xrays of Monday and yesterday. I cried when I saw them. Things corrected very nicely and look wonderful.

        I am keeping everyone in my prayers.

        'til later,
        Nikki

        PS-It isn't all sunshine and roses, but better than I expected it to be.

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        • #79
          Nikki,

          I'm glad things are still going well. As for where these kids get their strength, I can't tell you. All I know is they are among the strongest people I know.

          Why is she getting a brace? Is it to hold a curve from progressing or is it just for support after surgery? I haven't heard of too many people who get a brace after surgery. How long will she need to wear it?

          Remember to take care of yourself.

          Mary Lou

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          • #80
            Nikki, That is fantastic that they're being so proactive about pain mangement. If only all of our kids were so lucky! Sounds like you're in a really good place.

            My daughter's x-rays are just amazing. I cried too when I saw them. She is so straight! It's a miracle that her "S" curve that went from T3 to L4 was fused with just 5 vertabrae, and she is almost straight!

            Let me know if you ant my want my list of stuff you will need when you get home. We feel like we were very well prepared, and she's had an easy day home thanks to all the planning. There is nothing like your own bed!!!

            Susanna
            Susanna
            ~~~~~~
            Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

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            • #81
              nikki
              glad to hear everything is going well. Wow, you see last week you and susanna were all stressed and now can you believe the surgery part is over! Sounds like she is doing great and will be home before you know it. I do think the stress before was worse then actually going through it. I mean i don't know if i should say that since i wasn't the one having the surgery, but you guys know what i mean. The stress of the unknown before it and worry was horrible!
              susanna - isn't it nicer being the one giving advice on what to expect?
              jennifer

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              • #82
                I just want to see my little one running around this summer at the pool without any pain, and without being self-concious about her curvy spine. She is still in SO much pain, although it is certainly better than it was those first few days. I just worry that I've put her through this for cosmetic reasons, and she might have chronic pain as a result of my actions. I know that's not rational, she really needed to get this done, but mother's worry and guilt are powerful right now as I look over and see her suffering. Talk to me in a few weeks, I will most likely be much more confident in giving advice!

                Susanna
                Susanna
                ~~~~~~
                Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

                Comment


                • #83
                  Hi Susanna!! I'm so glad things are going well for your daughter Hopefully her pain will ease off soon... I am still praying for a smooth recovery for all the kids mentioned on here

                  Just wanted to say, just keep reminding yourself, with a curve as big as your daughter's she really needed to get the surgery done. Boachie wouldn't have done it if it could have been avoided.

                  Take good care of yourself as well during these stressful times! All the very best. Laura
                  30y/o
                  Upper curve around 55
                  Lower curve around 35

                  Comment


                  • #84
                    Hi nikki great to hear things are going well I will be in in shoes soon. I'm going to keep track of Nicole pain meds too. I haven't gotton through yet but I,m starting to feel perpared.
                    Jennifer the stress before is horrible. My problem is I worry about everyone. 1ST Nicole than my husband will he make it through. He is the weak one in my family. I'm the rock but I guess most women are.

                    Theresa
                    THERESA

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                    • #85
                      hi susanna
                      she will be running around at the pool this summer i promise you. I can totally relate to what you're saying about the worry that you may have done it for cosmetic reasons and you don't want her to have pain later on. I think we all worry about that. Nicole never had any pain before her surgery so i felt bad putting her through it fearing that the pain after the surgery would never go away. She is doing great, i know her back doesn't feel back to normal yet and wonder if it ever will, but i don't think we had a choice with curves as bad as all our kids who are undergoing surgery. I don't know if we'll ever stop worrying about them knowing what they have been through and i just worry about what their future holds for them. I just pray they don't have problems later on in life. It's pretty funny seeing nicole run now, you can tell she doesn't feel comfortable doing it, not that it hurts, i just don't think she knows how to run with her new back.
                      jennifer

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                      • #86
                        Mary Lou,
                        Crystal got a brace because her upper body pushed forward enough the doctor didn't want her to be doing that from habit. He also wanted to be sure that the surgical site is well supported. She should be in it from 8-12 weeks.

                        Today has been a little rough for her. Her body is starting to wake up and realize something is different. Muscles, nerve endings, you name it, it is sore today. But, she still doesn't complain much. She said that she knew it was going to hurt and she didn't see any sense in complaining about it.

                        Her catheter was removed this morning and she has been on the commode. After her brace was fitted, she took a few steps and was ready to get back to bed. All the activity today wore her out. The CNA washer her hair for her this morning and that made her feel much better.

                        She is running a fever and they are giving her tylenol. The nurse told me that is pretty normal when these kids are on morphine.

                        Theresa, keep track of her pain meds. We have done the same for Crysal. When the nurses want to do sometime, I ask them to please give her time for her meds to work. They are really good about it.

                        It amazes me that there are about 20-30 kids up here today, all of which have had surgery. There aren't any of them crying. The nurses get on top of the pain thresholds and stay with them. That seems so incredible to me.

                        Boy, do I understand your being stressed. I was just there a couple of days ago. But, you will soon be on the other side, like we are. It will amaze you the bonding that goes on between the parents too. A couple of us wives had to say goodbye to our husbands yesterday, as they had to get back to our respective homes. We were a motley crew last night. Sitting on the audomans in front of the nurses station. We were all lonely and missing the support our spouses had given us the last couple of days and weren't quite sure what we were going to do without them. But, we were visiting and having a nice time.

                        Jennifer, you are so right about the stress and worry before hand. It was much worse, and now I wonder why I was so upset. Things went like clockwork and Crystal is doing great.

                        Well, I need to check on Crystal.

                        Our love and prayers to you all.

                        'til later,
                        Nikki

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                        • #87
                          Hi Nikki
                          Sounds like everything is going as well as expected. I can't wait for this to be over. My husband is staying in the city for 3 nights then going home also. Thanks for sharing your experience between you and susanna. I will know what to do. I thank you both from the bottom of my heart. I will definitely keep track of the pain meds. i will be looking for your posts.
                          In my prayers
                          Theresa
                          THERESA

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                          • #88
                            Nikki,

                            Hi. I'm posting in this thread instead of the one I started since you are here too. Your info. on how Crystal is feeling is invaluable to me! Alex doesn't say when he is in pain so asking the nurses for meds before doing anything which may cause him pain is a great idea. Also, knowing that today has been a little tougher for her is good to know as well.

                            Scott will only be with me the 3 days surrounding surgery, but my mom is with me for the long haul. 1.5 weeks to go!!

                            Praying for you!!

                            Lura

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                            • #89
                              hi nikki
                              it sounds like things are really going great. She is doing so great you guys will be home before you know it.
                              That is great that there are alot of kids there so you have some support from the other moms. When my nicole had surgery she was the only kid on the floor so it really lonely when my husband would leave at night. I used to walk around talking to the nurses or looking for someone to talk to.
                              thanks for all the updates keep them coming
                              jennifer

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                              • #90
                                The best thing about going to Shriners is that it is all kids. And when the kids are feeling good enough to be kids, they get to be kids.

                                We're home and I have made several posts with a few feelings and experiences.

                                'til later,
                                Nikki

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