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Thread: Boys with scoliosis

  1. #31
    Join Date
    Nov 2003
    Location
    Texas
    Posts
    43
    Your support and prayers are better than gold. Thank you, thank you, thank you.

    I'm feeling better now, having read your post here and the others' posts in the surgery forum. Still adjusting, but feeling back on track. David and I had a good visit about it in the car (one advantage to living out in the sticks - we have at least 30 minutes or so of captive time in the car every afternoon). His disappointment has lessened and he was talking about the curves at least being balanced afterwards and the need to stop the progression.

    So we have re-grouped for the most part, thanks in no small part to the support on this site, and marathon conversations with the Lord.

    I'm secretly making some posters with pictures of jets (David's passion) and the family and the cat - just stuff to let his caregivers know more about him and fun stuff for him to look at when he feels like it.

    I get to stay in David's room...might trade out with my husband and sleep in the hotel if I really need to, but my husband snores loud enough to wake the dead so I insisted on this arrangement. I had to kick him out of my hospital room back in August because of that. At home I can poke him and make him stop for a while.

    There I go, yammering again. Stress.

    Much to do, must pack and get things around here in order but you know I'll keep coming back, until we leave Sunday.

    SanD

  2. #32
    Join Date
    Jul 2004
    Location
    Central Texas
    Posts
    62
    SanD,

    Not sure what time you're leaving today (hope you haven't left yet) but wanted you to know that I was thinking of you and your family. Hope you can manage to have a nice afternoon and evening. Our thoughts and prayers will be with y'all in a very special way tomorrow. Tomorrow is a good day to have surgery (if there can be a good day). It is a special feast day of Mary, Jesus' mother. She has always been a powerful intercessor for us. I know that she will be joining in our prayers for David's successful surgery.

    Take care.

    Susan

  3. #33
    Join Date
    Nov 2003
    Location
    Texas
    Posts
    43
    Susan I am going to attempt to send you a private message - haven't done that on this forum as yet. Sorry I didn't get to read your message before we left, but yes, Dec. 12 as well as Dec. 8 are very significant to us and when we saw how it was all going to be scheduled we felt somewhat amazed. More, hopefully, in a message --

    Things went very, very well - only half a unit of blood lost and very good reports from his surgeon on the speed of David's recovery this week - "A++" he says. We were released yesterday (Friday) after surgery on Monday! We did have to call Scottish Rite after midnight last night because his temp was right at 101 and we were all a bit nervous about it. It is wonderful to be able to call them 24/7 and get immediate help, talk with the nurses who cared for him and know that a doctor who is familiar with him is on call, too.

    Not a huge amount of correction in the curves, but his head does seem more centered over his pelvis. We go back in a bit more than two weeks and we'll see how things are then.

    David's showing determination and grit that we've never seen before and it is truly inspiring. He pushes himself to move and do a bit more each time, to do more than is expected. He gives very clear directions to us in assisting him. Sometimes he can walk - slowly - unassisted, and sometimes he is so exhausted he can't move his arms or legs without help ("Dad, put my hand on my knee, please").

    I can't say enough about Scottish Rite. It is an even more amazing place than I ever knew. Someday when things settle down for us I think I'll write about our experience in detail. David kept praising them and telling them that they made him feel like they were all focused on him and how secure and comfortable that made him feel. I was so proud of him for expressing his feelings and having such great manners, despite his pain/discomfort. He's normally a very, very quiet, softspoken kid. Maybe the drugs loosened his tongue a bit, but thank goodness everything that came out was positive.

    He is, and we are, of course exhausted much of the time. But I must say that I know that we are all strengthened by the prayers and support of so many people - friends, family, and many who don't know us at all. This is something I can't begin to express my full gratitude for, but I'll never forget and I'll certainly 'pay it forward', as well as back.

    Update when I can -

    Thanks again, from all of us,
    SanD
    Last edited by s&d; 12-19-2005 at 10:56 AM.
    Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
    Diagnosed Feb. '03, T36*, L28*
    Boston TLSO brace
    May '03 T44*, L36*
    July '04 T54*, L45* d/c brace, not holding curves
    June '05 T68*, L48*
    Initial post-surgery estimate T55*, L45*

  4. #34
    Join Date
    Oct 2005
    Location
    Michigan, USA
    Posts
    66

    Wink

    Hi SanD,
    So glad to hear everything went so well, and that your son is on the other side of surgery now. Believe me, I know what a great feeling that is. It feels like you have climbed this huge mountain, and won. I hope everything just keeps getting better for both of you now.
    I never picked up on the correction the doctor did get, was is good? And also, after surgery, the body does straighten up even more over the next few months. By my sons three month post op appointment, his shoulderblades were almost level again. Well take care, and I hope David has a speedy recovery.
    Sincerely,
    LeaEvelyn

  5. #35
    Join Date
    Mar 2005
    Location
    Kannapolis, North Carolina, near Charlotte
    Posts
    373
    S&D, congratulations and welcome to the other side. Kris

  6. #36
    Join Date
    Nov 2003
    Location
    Texas
    Posts
    43
    We'll get more detailed info on correction when we go back in a couple of weeks, but initial results immediately after surgery show a decrease in the thoracic from 68* to about 55* and lumbar 49* down to 40*. Also, surgeon decided not to do a thorocoplasty and and fused one less vertebra than planned, T-5 instead of T-4, down to T-11. David's doing well, but at this point, from the pain management aspect, I'm glad he's not dealing with the removal of up to 5 ribs. I imagine that would make moving around and breathing much, much more difficult.

    I'm being summoned...update later
    Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
    Diagnosed Feb. '03, T36*, L28*
    Boston TLSO brace
    May '03 T44*, L36*
    July '04 T54*, L45* d/c brace, not holding curves
    June '05 T68*, L48*
    Initial post-surgery estimate T55*, L45*

  7. #37
    Join Date
    Oct 2005
    Location
    Michigan, USA
    Posts
    66

    Red face

    Hi SanD,
    I hope David is doing much better by now. I haven't heard from you in a while, so I just thought I'd check up on you's. If you get this, please give us an update on his recovery, OK.
    Take Care,
    LeaEvelyn

  8. #38
    Join Date
    Nov 2003
    Location
    Texas
    Posts
    43
    Hi -
    David has done very well, recovering nicely with no major problems. His doctor is very pleased with his progress. David returned to school half-days this week - well, he made it three of the four days. Going half a day on Tuesday morning was more taxing than he thought and on Wednesday he just couldn't make it, but Thursday and Friday he went to his afternoon classes and was okay. Still has discomfort, mostly his chest, left shoulder and rib cage, but not the area in his back that used to hurt before the surgery. That was at the apex of his major curve...the pain that his doctor said wasn't really caused by the scoliosis.

    My visits to this forum have been curtailed by my return to work, the subsequent exhaustion, and computer problems. I hope to resolve the exhaustion, but the computer problems may persist for a while.

    The computer is acting up at this moment, in fact, so I'd best go before it does...more later, I hope.
    Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
    Diagnosed Feb. '03, T36*, L28*
    Boston TLSO brace
    May '03 T44*, L36*
    July '04 T54*, L45* d/c brace, not holding curves
    June '05 T68*, L48*
    Initial post-surgery estimate T55*, L45*

  9. #39
    Join Date
    Oct 2005
    Location
    Michigan, USA
    Posts
    66

    Red face

    I'm glad to hear he is doing so well, and is back in school. My son also went back for half days. He did this for two weeks. His major complaint was; a burning sensation in his shoulderblade. This took quite some time to clear up. We asked his surgeon about it, and he said, it was from the muscles being stretched, from the straightning of the spine. I hope David continues to do great. All the best to you's.
    LeaEvelyn

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