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Thread: Post Op One Year Anniversary

  1. #1
    Join Date
    May 2004
    Location
    Wilmette, Illinois
    Posts
    20

    Smile Post Op One Year Anniversary

    Next week, June 4th 2005 will be Jill's one year anniversary. All I can say to those of you out there with fears, doubts, worries and concerns is that if we are the norm for this kind of life event, then I can only say that we made it through with flying colors. Jill is going to be 15 in August. She was diagnosed when she was 11, at about 18 degrees, after curving to 28 degrees they put her in a brace and by the time she hit 44 or 48 degrees they were handing us a folder about surgery. I already knew our doctor was the best after researching him on the internet, but nevertheless the whole idea of this invasive surgery on my child was overwhelming. First I cried and denied that it might come to that, then I accepted it and made plans for getting through it. When he actually told us that surgery was necessary and we started to make the actual plans, such as date of surgery, giving blood, taking off of work, etc. and we had our pre-op consult with our doctor ...there was no turning back. It seemed so surreal. We were sitting in his office and he was showing us a real spine anatomy and telling us what he was going to do. Then he told us the risks and after it all sank in we left knowing that the next time we would see him it would be the morning of surgery. Now let's fast forward through all the emotional turmoil to the day of surgery. We were at Children's Memorial Hospital in Chicago. I can only say that our experience with the doctors, the nursing staff, the pain management team, and the peripheral medical personnel, was nothing but the best. Here we were for a life-changing event, and everything went so well. Sure the hospital was older and the rooms small, but the individual attention and care we received was beyond our dreams. Jill had a primary nurse that we had for most days and the continuity of care helped a lot. Yes we had different nurses, but they tried to give us the same ones as much as possible. This was great! They knew Jill's history and her progress each day. When they took Jill off the catheter and told us she would have to "get up" now, I panicked until one of the nurses basically told me to "step up to the plate" and that Jill would be fine getting up and walking to the bathroom. In one day we went from Jill only getting out of bed for physical therapy to a child that had to walk to the bathroom several times a day. I thank that nurse for the kick in the pants, because I was so worried about making Jill do too much. She came along and said "go for it" and that Jill would be fine. She was right, Jill not only managed to walk to the bathroom from day 3 but to manage climbing stairs the next day. If it hadn't been for this one "saucy" nurse who "told it like it was", we might have been there a few days longer than we were ( and we were out after 5 nights!). Of the five nights, I slept in the bed-chair four nights and my husband two nights. We were there by her side every minute. At first, I was afraid I might not be the "maternal" mom who would be there every second, but it was obvious, and so natural to just hang out with her every minute. This was not an individual plight, this was a family affair, and I was proud of all of us for getting through it.After we got home, I was off of work for a month to take care of Jill. This was the best gift anyone could have ever given me. We spent the best time together we have ever had. I thank everyone for giving me this time with my child. I will always cherish those days. Once they told us to start walking every day we took our walks together down the block and bought a cookie and a coffee at the local coffee shop. We spent days and hours together. Watching movies, talking, walking, playing playstation! I will never forget those days. But they were just a continuation of the whole event. From start to finish, great doctors, great care! She was a great patient. She never cried or groaned in pain. The epidural, with the self administered button was fabulous. After that they put her on Tylenol 3 and that was fine. The hardest part of the hospital stay was when they rolled her from side to side in the early hours right after surgery. The first night lasted forever. She kept asking "is it still today?" That first night was long, I'll admit. And Physical Therapy was scary because you aren't sure your child is really that ready. It doesn't matter, they are going to get her up, even if she isn't ready, because that's their job and they want her to get better fast. And she did! After her recovery and her return to school after a long summer of relaxing and rebuilding her strength and stamina, she eased back into school beautifully. Her only problem was some hip pain, probably from the re-alignment of her spine and posture. So her doctor suggested physical therapy. That started last December 2004 at Athletico and then after they released her, she continued with our trainer at school. She is is still working with him right up to the end of her freshman year (next week). She is, I am told by her trainer, and her surgeon, in better shape than the normal child. She can carry a heavy back-pack (although it still breaks my heart to see her do that)..She can do things, strength wise, stamina wise, better than an average teen. Her doctor calls her bionic and I guess she is! She has gained muscle mass and has a strong "core" from her months of training and therapy. Her torso is solid, and she is proud of her "almost six-pack abs!" She has no restrictions on her activities except for no waterskiing or tubing - per her doctor (which she really didn't do anyway) and she is enrolled in volleyball, basketball, and horseback riding camp this summer. She has been featured on the cover of Children's Memorial Hospital's magazine, "Carousel" and in the Chicago Sun-Time, just last week. She is a great role model to anyone going through this, but remember she is still just a kid. She has made all of us prouder than we could ever have imagined. I am truly an advocate for Children's Memorial. I am also an advocate for Scoliosis Surgery. So there it is. Happy Anniversary to Jill and your one year of post-op. Happy Anniversary to Children's Memorial and their staff. And thank you and happy anniversary to Dr. Sarwark, the best surgeon ever. God bless you all. And Thank You from the bottom of our hearts! And to all those parents and children out there waiting and worrying. You too can have the same success story we did. It can happen, I assure you!
    Jill's Mom - Surgery, Children's Memorial Hospital - June 4th, 2004

  2. #2
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Hi there

    Thank you so much for this post. It's so great for us out here waiting to read about such good outcomes - helps us to keep breathing and maybe sleep occasionally!!
    My daughter is still waiting for a date - latest is 'definitely not this month but we'll slot her in as soon as possible hope maybe June or July but he (the surgeon) has a very busy schedule'.
    It really helps to hear such encouraging stories.

    Lorrie

  3. #3
    Join Date
    May 2004
    Location
    Wilmette, Illinois
    Posts
    20

    Thanks

    That's one reason I wanted to write this was so that others would know there are definitely successful stories out there. We are one of them. But I also think that we are not alone and there are many others. But as the moderator says, sometimes when people are over surgery and are all better they don't always post threads or log on as often to report the good news. Thanks for your nice words! How old is your daughter? What is her curve?
    Jill's Mom - Surgery, Children's Memorial Hospital - June 4th, 2004

  4. #4
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Hi
    My daughter is 17and a half. we've never actually had a figure put on her curve. The main thing I think is the twisting - the x-rays look like she has ambitions to be a corkscrew.
    She has cerebral palsy which complicates things a little too.
    Lorrie

  5. #5
    Join Date
    May 2004
    Location
    Wilmette, Illinois
    Posts
    20

    Spine twisting

    Good luck with your daughter's impending surgery. The twisting or the torque will be corected too I hope. I hope you are able to gain some insight from these forums. I found them invaluable. And Jill actually made and met a friend with the same surgeon through this website! Hang in there! Barb
    Jill's Mom - Surgery, Children's Memorial Hospital - June 4th, 2004

  6. #6
    Join Date
    Mar 2004
    Location
    ny
    Posts
    554
    jills mom
    that was an awesome letter. It really brought tears to my eyes bringing back so many memories of my daughter's surgery and recovery. My daughter is 7 months post op and her 1 year anniversary will surely be here before we know it. I'm glad to hear your daughter is doing so well and i feel the whole recovery period was truly a bonding time that i will never forget either with my daughter and my daughter looks back on her recovery not has horrible or painful, she has good memories of it.
    Jennifer

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