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  • Update On Danielle

    --------------------------------------------------------------------------------

    Thank you to everyone for all their support. We are home today thank god for that. Her surgery went very well they went from T2 to L2 and she was in surgery for 8 hrs (longest 8 hrs of my life) She did not have any real complications. She did have trouble with her blood O2 but got that under control last night. She needed two units of blood during surgery and for anyone who knows my car issue will understand this comment they did not use my car crash blood LOL. It was a long week and she was in so much pain it was heart breaking, but I will say what a tough girl she did everything that was asked without complaint wow. At one point one of the Dr. was concerned with how much morphine she was using so she decided on her own to stop using not a good idea nurses and I kind of forced her to use it. Did not at any point have a fever but did and is still having trouble with BM also had severe nausea so happy the nausea stopped or should I say puking!!!! The plan was to go home today if she stopped puking, stayed off O2 and pooped well she did not poop, went all night with out O2 and went all day and night yesterday without puking then this morning her so smart mother gave her oj on and empty stomach and she puked right as the resident walked in the room she was so upset cause he said he was going to keep her one more day. The nurses and I both agreed she was good to go I could give emema if she does not poop so we called her surgeon and made a deal if she kept down breakfast and lunch she could go and she did. So happy to be home I stayed with her the whole time other then the hour a day for shower at home. Now recovery!!!!!!! I am so happy to be over the worst of this and for the record you were all right I was a reck but day of surgery was exteremly scary calm. Thanks again for helping me through this.
    Catherine
    Mom of 14 year old Danielle
    T45 degree curve Feb 2008
    T47 degree curve May 2008
    T50 degree curve Sept 2008
    Surgery Nov 24th 2008
    Ontario, Canada

  • #2
    Congratulatons to both of you, Catherine. Sounds like the nausea was an ordeal. I was worried about BMs after we got home, but that issue resolves itself with the help of home cooking and stool softeners.

    It all gets better from here--I know you're so glad to be home. Thanks for the update.

    Mary Ellen

    Comment


    • #3
      What Mary Ellen said

      Glad you are home. It's going to be better and better.

      Best regards,
      sharon
      Sharon, mother of identical twin girls with scoliosis

      No island of sanity.

      Question: What do you call alternative medicine that works?
      Answer: Medicine


      "We are all African."

      Comment


      • #4
        Good to hear from you

        Hi Catherine,
        Glad to hear Danielle is home and well. Well done to both of you - it is not easy seeing your child go through this and I know it must be a huge weight off your shoulders. She will now get better and better and you will be totally amazed at how quickly she will recover.

        Thanks for keeping us informed.

        Lisa
        Mum to Tahlia, aged 15. Fused from T2 - L3, 18/11/08.

        Comment


        • #5
          I'm very happy Danielle is home. Good to hear. The constipation/bm thing is ALWAYS an issue! I can't fathom why surgeons/nurses/etc. don't do something about this before, during and after surgery so the poor patient doesn't have to suffer!??? Makes me crazy because it CAN be an easy fix. They KNOW it's going to be a problem for most patients - why not eliminate the problem? Sheesh. Her nausea was emphasized because of the lack of bm's. When your GI system is full of stool, nausea sets in, you don't want to eat because you're already full, etc. UGH.

          Done ranting. I hope being at home will help her feel even better. Lots of hugs that she continues to have a smooth and uneventful recovery.
          Carmell
          mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

          Comment


          • #6
            Congratulations on being over with Danielle's successful surgery. Probiotic supplements can help somewhat with the constipation, I've found.

            I hope she has a really speedy recovery!
            Laurie

            Mother of Alexander & Zachary:
            Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
            Zach is 13 years old and very energetic.

            Comment


            • #7
              [QUOTE=Carmell;68118]I'm very happy Danielle is home. Good to hear. The constipation/bm thing is ALWAYS an issue! I can't fathom why surgeons/nurses/etc. don't do something about this before, during and after surgery so the poor patient doesn't have to suffer!??? Makes me crazy because it CAN be an easy fix. They KNOW it's going to be a problem for most patients - why not eliminate the problem? Sheesh. Her nausea was emphasized because of the lack of bm's. When your GI system is full of stool, nausea sets in, you don't want to eat because you're already full, etc. UGH.

              Carmell, Tahlia was given laxatives fairly regularly whilst in hospital, plus they had her on nutritious supplements and high-fibre foods. They encouraged her BM as soon as she could start to eat and it was a priority for them to kickstart this process. She did end up having a supp in the beginning because she was constipated, but it all went downhill from there (no pun intended ). I don't really understand why US hospitals let these kids go home before they're fully functioning down there!! I'm so glad i didn't have to worry about that.

              BTW, Tahlia is still in hospital and looks to be heading home tomorrow. Thank God!!!

              Cheerio,
              Lisa
              Mum to Tahlia, aged 15. Fused from T2 - L3, 18/11/08.

              Comment


              • #8
                Lisa--

                Here's hoping all goes well toward Tahlia's discharge tomorrow! Glad all is going well.

                Mary Ellen

                Comment


                • #9
                  Excellent news about coming home soon, Lisa.

                  I bet Tahlia will quickly feel better just being home again.

                  In re the BM issue, I first have to qualify my comments in saying I don't recall ever talking to the surgeon while my daughter was in the hospital. My husband would bring my other daughter every day after school and I would go home for a few hours to shower and rest. The surgeon always came by at this time so my husband talked to him every day. I don't know the extent of everything they talked about. I was present at the hospital at all other times and spoke daily with the resident who assisted in the surgery as well as the nurses of course.

                  If there was a requirement to have a BM prior to discharge, I was unaware of it. The only requirements I recall had to do with climbing stairs and such. They completely restricted all food/drink/ice until bowel sounds were heard. After that, they gave her colase daily and brought food but didn't seem overly concerned when she didn't eat. In fact she barely ate anything and wasn't at all hungry until maybe the last day in the hospital. I have no recollection of this being on anyone's radar.

                  In re discharging kids before they have a BM, I'm guessing they know through experience that if certain indicators are present (bowel sounds, some eating, daily colase) that there will be no problem. I really don't know. I just know it turned out fine. And I know they get a boatload of scoliosis fusions from our surgeon through that pediatric ward per the nurses. They are batting 1000 in our one case.
                  Sharon, mother of identical twin girls with scoliosis

                  No island of sanity.

                  Question: What do you call alternative medicine that works?
                  Answer: Medicine


                  "We are all African."

                  Comment


                  • #10
                    Sharon,

                    Your story is fairly typical, as far as I know. The ONLY part that isn't enforced in many hospitals (sadly) is that many surgeons don't order Colace, or any stool softner, laxative, etc. until AFTER the patient is in pain from the constipation. My point before (too much rambling) was that patients NEED at least Colace from the beginning, not just when they start showing signs of problems. By then, it's too late. MUCH like playing "catch up" with pain meds. Don't wait (those first days/weeks) until you feel lots of pain to start taking the meds. Stay on top of it. Stay on top of the constipation problems too.

                    If a patients is normally a healthy, typical person, eating is probably not a big concern to the medical staff because they know once the patient is feeling better (at home, especially) their eating habits will return and it won't be a problem. We try to keep Braydon eating in the hospital (since he really can't afford to lose weight) but if he doesn't, not a big deal. They know we know to work on that at home. Drinking is very important tho. Staying hydrated, especially after an IV is removed, is critical.

                    So, I agree with the post-op experience you and your daughter had. Sounds typical for a healthy teenager having major surgery. I just wish ALL hospitals would take care of constipation problems BEFORE they happen.
                    Carmell
                    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

                    Comment


                    • #11
                      Glad to hear that things are working out for you and Danielle.

                      Continued prayers and good wishes for a speedy recovery for her!

                      How is she managing the pain now? Could the nausea have been from the pain meds?

                      I hadn't thought about what Carmell mentioned about not having a BM, then being backed up and having the nausea and vomiting--makes sense though!
                      Also accounts for the lack of appetite.

                      Congratulations to Tahlia, too! Has she already been through rehab?

                      I agree with Lisa--I know that recovery does go well once the children are home, but I think the US hospitals are too quick to give them the boot. Maybe that's just me trying to be overly cautious.

                      Comment


                      • #12
                        Glad Danielle is home and well. Best wishes for a speedy recovery.

                        Bethany

                        Comment


                        • #13
                          Originally posted by pmsmom View Post
                          Glad to hear that things are working out for you and Danielle.

                          Continued prayers and good wishes for a speedy recovery for her!

                          How is she managing the pain now? Could the nausea have been from the pain meds?

                          I hadn't thought about what Carmell mentioned about not having a BM, then being backed up and having the nausea and vomiting--makes sense though!
                          Also accounts for the lack of appetite.

                          Congratulations to Tahlia, too! Has she already been through rehab?

                          I agree with Lisa--I know that recovery does go well once the children are home, but I think the US hospitals are too quick to give them the boot. Maybe that's just me trying to be overly cautious.
                          Tahlia is now home! We came back just a few hours ago - a total of 18 days spent in hospital. However, i just want to say that it is not just US/Canada hospitals that send them home early, even hospitals on the east coast of Australia do. Anyway, she is on nothing more than panadol now and the only issue we have to contend with is her brace, which is annoying the crap out of her. Unfortunately, i think we were ushered out too soon and the orthotist was rude and obnoxious and I honestly think I would have decked her if Tahlia wasn't in the room. Because Tahlia's lung collapsed and conseuquently ended up spending a whole extra week in hospital, this delayed her arrival at rehab, therefore the orthotist had to "squeeze" her in and made us aware of it on several occasions. She told Tahlia not to be a "princess" by lying down so much and when i offered to keep her in a little longer so she could monitor the fitting of the brace (she was became agitated this morning because Tahlia wasn't sitting up and took off the brace to have a shower), she said no, she was fully booked and it would then be "your problem". Such a cow!! Anyway, so she has to wear this brace now (a poly-jacket, as they call them) and it's very uncomfortable. I allowed her to take it off for half an hour so she could lie down (and be a princess!!!! ) and rest.

                          Anyway, sorry had to vent.

                          Mary Ellen/Catherine - do Sidney and Danielle have to wear a brace?? Hope things are continuing to improve for them both.

                          Thanks all for asking after Tahlia. Apart from the brace, she is getting better and I know it will be uphill from here.

                          Cheers,
                          Lisa
                          Mum to Tahlia, aged 15. Fused from T2 - L3, 18/11/08.

                          Comment


                          • #14
                            Very glad to hear Tahlia is home. You had some rough sledding. But you're on the glide path back to a normal life now.

                            Man, that orthotist seems to have issues.

                            Best regards,
                            sharon
                            Sharon, mother of identical twin girls with scoliosis

                            No island of sanity.

                            Question: What do you call alternative medicine that works?
                            Answer: Medicine


                            "We are all African."

                            Comment


                            • #15
                              Lisa--

                              Sidney is not wearing a brace. He is doing well. I still worry about his posture, but it is early yet, and I am assured by others this will likely resolve over time. He is now sitting up for longer, getting in and out of bed and putting on/taking off his shoes and socks by himself, and taking longer walks each day, and in general doing more for himself. He is having a few isolated rib pains and "stitches," which I consider to be a good thing, because it tells me his muscles are starting to rearrange themselves. Today is 3 weeks post-op for him.

                              I'm sorry you had such a horrible experience with the orthotist. You certainly didn't need that given all you've been through. Glad you're home.

                              Mary Ellen

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