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Thread: Rolling out of Bed

  1. #31
    Join Date
    Sep 2003
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    48
    Well, if I hadn't been there myself, I probably wouldn't have believed it, but today, exactly two weeks from her surgery, my daughter and I went to the shopping mall, ate our favorite orange chicken dish and had our usual "Will you buy this for me - No, it's too tight" argument. She was REALLY tired afterward, but we spent a couple of hours there, and it was wonderful.

  2. #32
    Join Date
    Feb 2004
    Posts
    105
    Hi Paula,
    That is the most wonderful message. I almost cried when I read it. That gives me so much hope. I am so happy for you. I pray ours goes that well. Congrats on your first mall trip. And I'm glad she got rid of her headaches.

  3. #33
    Join Date
    Sep 2003
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    48
    Hi, Peggy,

    Just wondered how things are going with you...what is the date of your daughter's surgery?

    You had asked about pain management. Something I wish I had done before my daughter's surgery is try to explain the mental component of pain - how fear of the pain can intensify it. If you have had any Lamaze-type training - that is what I am talking about - breathing exercise, focal point, etc. Trying to do that in the hospital when she was in pain was totally ineffective, and I think would have been a really valuable tool to have come in with. Tell her she will feel like she has been hit by a truck at first but she has to HAVE FAITH THAT IT WILL GET BETTER AND BETTER. A nurse in the hospital told me that from her observations with these surgeries, the kids all "have a hump to get over" at first when recovery seems stalled, but once they get past that, recovery comes quite fast. That was our experience, too.

  4. #34
    Join Date
    Feb 2004
    Posts
    105
    Hi Paula,
    Her surgery is the 15th. Thanks for asking. As you can imagine I am in the full terror mode right now. A few questions for you again. How many days was it till your daughter got over the "hump"? Did the pain come in flashes or was it constant? Did the nurses give you any idea of how to work through it? I've tried to warn her but I know she has no clue about how painful it will be. How is your daughter doing at her 3 week mark? Hope everything is coming along well. Thanks.

  5. #35
    Join Date
    Mar 2004
    Location
    Northshore, suburbs near Chicago
    Posts
    185
    Hi Peggy and Paulasue,
    About the "hump" - I think I took until sunday to finally feel better - thats four days after surgery. My pain was pretty constant, but at different levels. When they rolled me (every two hours) the pain was really bad, but after that it settled down and I was fairly comfortable until I was rolled again.

    Good luck Peggy - I know your surgery is soon, so try to stay upbeat. And Paulasue, good luck with your daughter's recovery.
    Charlotte

    48 degree upper curve
    L2 to T4
    Braced for 4 years
    Surgery 2/4/04

  6. #36
    Join Date
    Sep 2003
    Posts
    48
    Hi, Peggy,

    I would say that it took about four days for us to "get there." I think this would have come sooner if she hadn't developed the digestive issues because that came with its own share of pain that just compounded the problem. Some kids are ready to go home by the fourth day, so there is just no way of telling how this will go.

    My daughter was heavily medicated at first, and this took care of much of the pain most of the time. She only cried once and that was as much from frustration as pain. There was never any screaming or groaning (but plenty of complaining!). When the morphine would begin to wear off (she had a button that she could push every 15 (?) minutes to self-medicate), she would begin to feel it. When there would be particular episodes were right after she had to be moved to a different position. It would always take about 10 minutes for her to "settle" into the new position, and she would be very uncomfortable during that time. This is the time that the deep breathing and trying to take her mind to a different place would have been helpful, because she always did ultimately get comfortable again - it just required a bit of time. Be prepared to become an expert at "pillow stuffing" - behind her back, under her leg, just right under her head - these are the things that bring the comfort. There was a doctor that came every morning whose only purpose was pain control - she talked with Sarah asking how she rated her pain, what was working, what she needed help with, etc., and adjusted things accordingly. I don't remember the nurses adding anything to this, but they were always very compassionate and responsive. Remember it is only really intense for a few days, and there is lots of pain medication available.

    At three weeks, things are going very well. She went for her first check up on Monday and found out her correction - she was 63/50 and is now 27/15! Her incision is nearly healed and the only thing she can't do on her own is bend over at the waist and dry her hair upside down (they aren't supposed to bend there yet). So she bends over at the hips and supports herself with her hands on a table, and I hold the hair dryer. She takes two Tylenol a couple of times a day for pain when she needs it, which is not all the time. She doesn't have to have any particular pillow arrangement for comfort now in bed - is back to sleeping on her stomach again. She is going to a movie with some friends tonight ,and she is probably going to start back to school half days on Monday. She still doesn't have a ton of endurance, but is bored out of her mind at home now. I think we are entering the phase where holding her back is the bigger problem! She has begun to pester me for the car keys again. Oh, well, it was nice while it lasted...

    Keep telling your daughter that she is strong and will weather this well and be even stronger when it is over. Hope this helps!

  7. #37
    Join Date
    Mar 2004
    Location
    Northshore, suburbs near Chicago
    Posts
    185
    Paulasue:
    I am constantly amazed by how similar your experience and your daughter's is to mine. Its all so similar, which is particularly surprising because I have heard of some surgeries on this board where the outcome is so different.

    How old is your daughter? If shes asking for the car keys it makes me think shes about my age.

    I'm really excited about going to my stable tomorrw. I can't ride, but being around my friends (human and horse) is so much fun - I'm glad that I can still be a part of the riding experience. I'm also hoping to get a job as an instructor this summer. Wish me luck...
    Charlotte

    48 degree upper curve
    L2 to T4
    Braced for 4 years
    Surgery 2/4/04

  8. #38
    Join Date
    Sep 2003
    Posts
    48

    Post

    Hi, Charlotte,

    My daughter is almost 17. I agree with you about how amazingly similar your experiences with the surgery have been. I was so happy to hear that you are going back to the stables again - you must be absolutely thrilled. It must feel wonderful to be re-entering a world that you love so much. I am sure you will get that instructor's job - you have an additional strength of character now that will always serve you well and anyone would be lucky to have you as an employee. So, instead of wishing you luck, I will say "congratulations" on landing that great job!!

    Paula

  9. #39
    Join Date
    Mar 2004
    Location
    Northshore, suburbs near Chicago
    Posts
    185
    Thank you Paulasue. You are such a sweet person - your daughter is lucky to have a great mom like you.
    Charlotte

    48 degree upper curve
    L2 to T4
    Braced for 4 years
    Surgery 2/4/04

  10. #40
    Join Date
    Feb 2004
    Posts
    105
    Thanks for the responses. I'm glad to hear both Sarah and Charlotte are returning to normal lives. I can't believe Sarah is going back to school already! Isn't that super fast for a double fusion? You guys give me hope! I can only pray that my daughter recovers that well. We went on the hospital tour and that was really tough on her. Overwhelming and scary. It is the first time in all these months that she broke down. She has kept it all inside and not complained at all but the 13 year old came out in her. I felt so helpless. They said she may be in intensive care 4 days and on the ventilator 2 which is more than I hoped. But am trying to stay positive. Thanks for all your help and suggestions. I appreciate it so much. Good Luck at the stables Charlotte. Good Luck to Sarah returning to school.

  11. #41
    Join Date
    Sep 2003
    Posts
    48
    Thank you, Charlotte!

    Peggy - I am so sorry things went badly during your hospital visit. I think that is about the time I went on "auto pilot" emotionally. The good news is that this is one of the dreaded things on the "list" that you have now survived. Try to stay calm, focused and positive, and soon all of those dreaded things will be behind you.

    Sarah went to open tutoring sessions at school on Monday and Tuesday to get caught up in her math class, and then is going back Wednesday for a half day, and Thursday full-time. We took advantage of her being up and about on Monday and Tuesday and visited a court in session (she wants to be a lawyer and wanted to see some "live action"). She was able to tolerate sitting on those hard benches for several hours each day, so we hope that those awful plastic molded school seats will be OK, too. Thursday will be the end of her fourth week out from school and was what her doctor told her would probably be the time out (although he gave her a note which allowed her to be out six weeks), so that is about what we were expecting. I am really happy about the rate of her recovery and more than a little astonished by it. At the end of about two weeks there was a noticeable improvement - like another milestone of some sort had been reached. I have read from other posts that this is a pretty common occurrence. She was out with friends most of last weekend, so that pretty much put an end to any argument about getting back to school!

    One step at a time...

    Paula

  12. #42
    Join Date
    Feb 2004
    Posts
    105
    Hi,
    Your daughter is doing amazingly well. So happy for you! Well we go tomorrow the 14th. My daughter has a slight sore throat so they are going to check her in the morning and decide if it is a go or not. I'm terrified of tomorrow but I'm more afraid of delaying it. Her curve is really stiff at the bottom and if it gets delayed I'm afraid that they will have to do two surgeries, the first one thru the stomach. Plus she would have to do the blood donation all over again. Just want this over with and her safe. Please keep her in your prayers tomorrow. Thanks for everyones help.
    Peggy

    P.S. I will let yiou know if it gets delayed. If not hopefully I can write back in around 8 days with all this behind us and recovery on the way.

  13. #43
    Join Date
    Feb 2004
    Posts
    105
    Sorry. The surgery is the 15th.

  14. #44
    Join Date
    Sep 2003
    Posts
    48
    Hi, Peggy,

    I just wanted to let you know that you and your daughter have been in my thoughts and prayers. Please post how you two are doing as soon as you feel up to it.

    Paula

  15. #45
    Join Date
    Apr 2004
    Location
    Brush, Colorado
    Posts
    89
    Hi peggy, I just read the posts in this thread. I hope your daughter is doing okay. I had my surgery when I was 13. It was abot the same as the others that have posted, but I had 2 surgeries because I had kyphosis too.

    For those who were wondering, once you get used to log rolling out of bed, you do it most of the time. I'm 28 now and I still log roll to get out of bed. I don't log roll into bed anymore though. I also "hinge" at the waist instead of bend with the spine. I was a big baby with my pain in the hospital! but after the 1st month it gets a great deal better. Actually, the 1st couple of weeks were the worst and it got better from there.

    Right now I'm still mostly straight and have very little back problems. I am overweight and that makes my low back ache, so do what the doctor says and don't gain weight!!!! Also, do the excercises. I'd be happy to share my experiences with anyone who wants to talk to someone whos been through it all.

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