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  • #16
    My 13 year old daughter has to donate 4 pints of blood before her surgery. She also gets 4 injections of Procritin. After the surgery her doctor is going to have her use a bone stimulator daily. Has anyone else used one of these?

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    • #17
      blood...

      I went four times in total to donate my blood. Each time I gave a pint. So four pints in all. They had me on this diet of spinach and steak to keep my hemoglobin count up so that I could keep donating. Everytime I donated they took my blood pressure and everything to make sure I was okay to donate the next time. This way I didn't get blood from anyone but myself. It's called the autologous blood program, I think. My doc didn't even offer me a choice, it's just what we did.

      Godbless
      lisanicole
      lisanicolegrace
      29/F/Canada
      Surgery - 11/10/2000
      80° curve to 19° post op.
      www.lisanicolegrace.com
      @lisanicolegrace
      facebook
      x-rays
      picture of my back

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      • #18
        You really shouldn't need a "steak and spinach" diet if you take iron supplements, along with a multivitamin. FeSO4 is what I took and it kept my hemoglobin count at a great level.
        Charlotte

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

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        • #19
          Did the iron supplements affect your stomach. How much did you have to take a day? I will need to take 350 Miligrams.
          Surgery: June 4th, 2004
          Main curve: 44 degrees
          Location of Curve: Upper Right Part of Back
          Surgery Type: Posterior
          T4-T12

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          • #20
            I took the same amountn of iron. The pills made me a bit constipated, which is why my doctor recommended that I try to eat lots of fiber. This includes vegetables and whole grain cereals or breads. You can also take metamucil pills, which are a fiber supplement. Thats something I'm taking now b/c I've had a lot of post surgery digestion issues. Gross I know.
            Charlotte

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

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            • #21
              what was your guy's degree, and how much did you guys grow?
              Surgery: June 4th, 2004
              Main curve: 44 degrees
              Location of Curve: Upper Right Part of Back
              Surgery Type: Posterior
              T4-T12

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              • #22
                Hi Jill K.
                I can't answer this question per fact because my daughter won't have surgery till April. But I know that her curve at last check was 60 on top and 35 on bottom. We go tomorrow to the doctor again. He did tell me that she should grow 1 to 2 inches post surgery. This is like ugh! to my daughter who thinks she is too tall at 5'7 at age 13. But I tell her you will be thankful for this as you get older. Easier to keep off weight and the boys love those long legs!
                Last edited by Peggy; 03-29-2004, 02:41 PM.

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                • #23
                  My daughter donated three pints blood before her surgery and took a slow-release iron supplement called SlowFe that is supposed to help with the constipation issue. She was given back all three pints during her surgery plus what they were able to capture and "recycle" with some sort of machine during the surgery. She lost over a liter of blood and I sure was happy we had her own blood on hand to give back to her. One less thing to worry about. Her hemoglobin count dropped to 8 after the surgery, and the doctor was going to give her more blood if it went to 7, but she stabilized then and has continued to improve now that she is eating again and taking the supplements (which were recommended for about a month). I don't know anything about the stimulator. We were told to monitor her diet and make sure she gets 1,000 mg/day of calcium (regular recommended daily allowance) and give her supplements if she can't'/won't get it through her diet.

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                  • #24
                    My daughter has been taking that same iron supplement for the past few months. I'm glad she was able to donate her own blood so that if she needs it, its there. I guess it is pretty common to lose a lot of blood. How long was your daughter's surgery? Did she have a chest tube in? Did they break her ribs at all to fix the hump? Sorry about so many questions! Thanks.
                    Again congratulations on the successful surgery.

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                    • #25
                      Hi PaulaSue,
                      Another question for you! Was your daughter on a ventilator after surgery? And if so for how long. I know you said she had trouble with her lungs waking up. Thanks again.

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                      • #26
                        Sarah's surgery lasted six hours, but a fair amount of that time was devoted to getting her ready for the surgery and pulling her out of it. When we first saw her in recovery, she had IV's in both wrists, a drainage tube coming out from her incision, a Foley catheter, all sorts of electronic monitor wires attached to her chest and stomach, and a tiny epidural line going into her back. There was no respirator or chest tube. I think they had some sort of tube in her throat during the surgery because her voice was very raspy for a day or so. There is a delicate balancing act that must take place at the beginning of the recovery period which requires finding how much pain medication can be given without giving too much. This is a totally unique situation with each child and they have to "tinker" with it to find out how they react. She was at first so sedated (still coming out of the anaesthesia too) that she would just drift off into a deep sleep and stop breathing - there is a respiration monitor what would signal how many breaths she was taking and go off when it dropped below a base line. When it went off, I would wake her up and remind her to take a deep breath. This lasted a couple of hours. She never needed any sort of other intervention about this, but I suppose it could have gotten dangerous. There were lots of nurses nearby constantly, but I was there too and just did this. They then reduced the morphine and the anaesthesia wore off more, so this problem gradually went away. She was breathing shallowly however, to avoid pain, and began to develop a little fluid in the lower part of her lungs . Once she moved around a little more and spent a lot more time with the little breathing plastic exercise thing (spiromometer?), this cleared up. Sticking with this gizmo is really important.

                        The epidural line was removed first to lower the amount of pain meds going in and the Dr. thought it wasn't doing anything anymore anyway - its effectiveness is very dependent on placement and it is easily dislodged by movement of the patient (which is encouraged). The catheter and the various monitors were removed next about the fourth or fifth day, then the drainage tube. She had one of the IV's removed about the fifth day because it stopped working and then the last one wiggled free and was removed on the sixth day, by which time it was only putting in the "gatorade in a bag" and some antibiotics given as a preventative against pneumonia.

                        No, they didn't have to do anything with her ribs - just fixing the rotation was enough to take care of most of the rib hump. Hope this helps!

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                        • #27
                          Paulasue2 gives a very accurate description of the surgery. Mine was a bit longer (8 hours), but I had basically the same equipment. I had more breathing difficulties and my breathing monitor went off every time I started falling asleep. To fix this, I was given one of those oxygen tubes that go in the nose. That pretty much fixed my breathing rate.

                          I did have five ribs removed - I've never heard of this breaking ribs and rearranging them thing. As far as I'm aware, my ribs were completely removed. I think the rib process makes the surgery twice as hard - it was the source of the majority of my pain. But, I am very happy with how I look now. My "hump" is completely gone!

                          I hope I've helped and good luck everyone.
                          Charlotte

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

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                          • #28
                            Thanks PaulaSue and Charlotte. It helps to hear what went on so that I won't be so surprised when things pop up. I never heard anyone talking about the breathing problem before. That has to be very scary. My daughter's surgeon said to expect to be in surgery anywhere from 8 -11 hrs. He is removing ribs also. How do you just take out ribs and have nothing there? I didn't think to ask him about this. Can you tell they aren't there Charlotte? I know she will be on a ventilator after surgery and thru till the next morning. He said that this helps the body not fight so hard to breathe and gives her the rest that she needs that first 24 hrs. Also this will help her lungs since she will have a chest tube in as a preventative in case her lungs do fill with fluid. I can't imagine having sharp chest pain from the rib removal and having to breath with the spiromometer but I know how important that is to do. PaulaSue were you able to stay with Sarah the whole time in ICU? Thanks again. With surgery only 2 weeks away I am really getting overwhelmed.

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                            • #29
                              About the ribs - I can see that there not there, as in I look in the mirror and the side that the ribs were removed from kind of curves inwards instead of outwards. Other than that, I can't tell at all! I've tried to feel where the ribs were removed, but it all feels the same. Though the bone is gone, the muscle, fat, and other tissues are still there, so its not like theres this gaping hole. The breathing difficulties and pain are only temporary. In the long run, I'm glad that I chose to have the rib surgery.

                              Good luck - try to stay positive.
                              Charlotte

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

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                              • #30
                                Hi, Peggy,

                                Charlotte's message reminded me of two other things Sarah had attached to her (can't believe I have forgotten some of this stuff already!) - she had one of those oxygen tubes tucked into the front of her nose and a thing sort of like the finger of a glove around one finger that monitors the level of blood oxygen. The oxygen began to dry out her sinuses after a few days, and they then attached a small water bottle to the oxygen which added moisture. This was very helpful for that problem.

                                Yes, my husband or I stayed 24/7 in ICU. The hospital has large recliner chairs by the bed, but some of the parents were sleeping in the beds with their younger children. I think this policy varies by hospital, but it seems like all sorts of rules get modified when it comes to caring for children. ICU, especially in a pediatric wing, is definitely not a place to get any good-quality rest. The "intensive care" is the thing it is good for - there is a constant stream of people coming by monitoring the patient, plus all the noise from other patients and family members. I don't think either one of us slept for more than an hour or two straight until she moved out of ICU!

                                Paula

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