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  • #16
    Congratulations on getting home, Bethany. It will get easier from here, even the BM part. My son also got very groggy from the meds, and as soon as they were adjusted he was much more alert.

    Sounds like Jesse's doing great!

    Mary Ellen

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    • #17
      Sounds like Jesse is doing very well so glad to hear. Is it not the best feeling to be back in your own home with the worst of this behind you. The pain and dependence will be over before you know it Danielle is doing pretty much everything for herself. It is very hard for them and their personal privacy but what are you going to do I was suprised how well Danielle took and appreciated the personal things. Merry Christmas to you and your family
      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

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      • #18
        I know it will get better, but I really wish Jesse could sleep at night for more than 2 hours at a time! I'm exhausted and cranky. I know I shouldn't complain in light of what he's gone through.
        Jesse's going for longer stretches in the day without meds and he was awake for a good chunk of the afternoon yesterday. His biggest complaint is stiffness, which I guess is better than pain. He is able to do more for himself and is getting up and around. He needs less help getting in and out of chairs/couches/recliners. Jesse's appetite is better and he's no longer constipated!
        Well, I really think I should nap while he's sleeping.
        Bethany

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        • #19
          Hang in there, it really will get better quickly from now on. The stiffness takes a while but does improve. Keep Jesse up and walking as much as possible and that will help a lot.
          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.

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          • #20
            we're back in the hospital

            Jesse has been doing great, recovering well,(except the sleeping at night). Yesterday about an hour before we were going to my in-laws (Jesse wanted to go for an hour or so), Jesse's dressing started dripping watery blood. My best friend, also an ICU surgical nurse, was at our house. She looked at it, said it looked okay, redressed it and told us what signs to look for. I called the surgeon anyway. He said to have Jesse lay on his stomach or side for he next 24 hours and if the bandage soaks, go to the ER and that he would call the following day.
            Jesse had a hard time with not being able to go; he was real disappointed. My heart just broke for him.
            As the evening went on, the bandage was still "bloody", but not soaked. Well, at bedtime he had a fever, 101.2. I called the after hours number, the doc on call was not too concerned as fevers do sometimes accompany spinal fusions, but he was going to email Jesse's surgeon. At 12:30am, his surgeon called and told me to head to the ER in the morning and he would notify his colleague on call.
            They decided they wanted to reopen the incision to check for infection. And that he'd have to stay in the hospital for at least another 2 days. Jesse was so upset. He kept begging and pleading to just give him antibiotics and he's come back the next day. We all finally convinced him that it was in his best interest to do this now.
            There was no evidence of infection, but the did find a blood/fluid pocket, which they drained. They also left 2 drains in his back after the closed him back up again. They said it was a good thing, because if we left it, he would continue to drain and the pocket would eventually become infected.
            So, we're here at Children's again. We'll celebrate Christmas one day next week. When Jesse said to me "what a christmas present, huh?" And I said "the fact that you're okay IS the best Christmas present"
            Hope you all are having a wonderful holiday.
            Bethany

            Comment


            • #21
              Ahh Bethany. You are correct. It might have been so much worse. I can fully sympathise with Jesse though. I hope all's well soon and Jesse can come home and continue his recovery and enjoy some of the holiday season with family.
              Surgery March 3, 2009 at almost 58, now 63.
              Dr. Askin, Brisbane, Australia
              T4-Pelvis, Posterior only
              Osteotomies and Laminectomies
              Was 68 degrees, now 22 and pain free

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              • #22
                Bethany -

                Belatedly adding my voice to Jesse's cheer team

                What a blow to him to have to go back for the wound cleaning - but definitely better than the possible alternative of nasty infection. You guys must have gotten such a fright with the bloody bandages - so relieved it was "minor".

                Wishing Jesse a smooth recovery from here on out - & much more sleep for you both very soon! Hurray for Progress!!

                BTW - after every surgery, with good pain control or not, I always get a low-grade fever for a few days. It's very common, apparently, & so long as it doesn't go too high (possibly indicating serious infection), my doctors/nurses are never concerned. I'm glad it came to nothing for Jesse, too

                Take care, Bethany.

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                • #23
                  Bethany - please give Jesse our very best. This will be a memorable Christmas, not like he'd want it to be, but one that you can look back on and have such a sense of accomplishment when this is all over. Many more hugs and well wishes that he's one his way to a full and successful recovery. No more setbacks.
                  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/

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                  • #24
                    Originally posted by babachi View Post
                    Jesse has been doing great, recovering well,(except the sleeping at night). Yesterday about an hour before we were going to my in-laws (Jesse wanted to go for an hour or so), Jesse's dressing started dripping watery blood. My best friend, also an ICU surgical nurse, was at our house. She looked at it, said it looked okay, redressed it and told us what signs to look for. I called the surgeon anyway. He said to have Jesse lay on his stomach or side for he next 24 hours and if the bandage soaks, go to the ER and that he would call the following day.
                    Jesse had a hard time with not being able to go; he was real disappointed. My heart just broke for him.
                    As the evening went on, the bandage was still "bloody", but not soaked. Well, at bedtime he had a fever, 101.2. I called the after hours number, the doc on call was not too concerned as fevers do sometimes accompany spinal fusions, but he was going to email Jesse's surgeon. At 12:30am, his surgeon called and told me to head to the ER in the morning and he would notify his colleague on call.
                    They decided they wanted to reopen the incision to check for infection. And that he'd have to stay in the hospital for at least another 2 days. Jesse was so upset. He kept begging and pleading to just give him antibiotics and he's come back the next day. We all finally convinced him that it was in his best interest to do this now.
                    There was no evidence of infection, but the did find a blood/fluid pocket, which they drained. They also left 2 drains in his back after the closed him back up again. They said it was a good thing, because if we left it, he would continue to drain and the pocket would eventually become infected.
                    So, we're here at Children's again. We'll celebrate Christmas one day next week. When Jesse said to me "what a christmas present, huh?" And I said "the fact that you're okay IS the best Christmas present"
                    Hope you all are having a wonderful holiday.
                    Bethany
                    I'm sorry to hear that this happened, but you are right--the best present is that you all will be together and that he will be ok. That is what's most important.

                    Marian

                    Comment


                    • #25
                      Best wishes for Jesse's speedy recovery from that bump, Bethany. This will definitely be a Christmas and new year to remember!

                      Comment


                      • #26
                        I'm sorry that the infection happened, esp. on Christmas. I hope Jesse's incision is doing better by now and that Jesse gets to celebrate Christmas soon.
                        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


                        • #27
                          well, we're still here. The incision is still draining and the drains in Jesse's back just came out. Those were draining a good amount of fluid. He's going home with a PICC line for iv antibiotics. The docs want to treat him aggressively to be sure the is no infection, even though the cultures came back negative. They don't want to mess around.
                          At this point it looks like Jesse will go home tomorrow. Keep your fingers crossed.
                          I also started a blog.
                          Thanks again for your wishes and prayers.
                          Bethany
                          http://web.mac.com/bessiebingo/Site_2/Photos.html

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                          • #28
                            I'm glad things are getting better for Jesse.

                            Thanks for doing the blog. I think they are extremely helpful for folks going forward with surgery. I wish I had the wherewithal to do one.

                            Del (aussiemum) also has a great blog on her daughter's surgery.

                            sharon
                            Last edited by Pooka1; 12-30-2008, 09:03 AM.
                            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."

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                            • #29
                              Glad to hear Jesse is doing better and the docs are being proactive. I hope you'll get to go home tomorrow! Jesse's x-rays look great.

                              I second the thanks on the blog. We set up one on Carepages.com for Sidney, and it was, as Sharon says, very helpful. I know what a blog is and how to use it, but I didn't have the skills to set one up all by myself. Carepages offers a template format ready to go, and you just plug in the information. It sure saved a lot of phone calls and kept everyone informed.

                              Mary Ellen

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