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  • #46
    Mary Ellen,

    What helped Laura achieve her first BM were those Metamucil cinnamon wafers (& colace). Here's another tip: mix the prune juice with some milk to make it creamer & less bitter. Since you don't have a stove, heat it in the microwave for a few secs.

    I'm so glad to read that Sidney's blood oxygen levels are holding well. Remember to have him blow into that portable spirometer as much as he can, to help his lungs get back to normal, so that before you know it, he'll be able to get the right combination of resting in bed AND being up in a chair & walking.

    What oral meds is Sidney on? After the morphine pump & IV morphine, Laura switched to oxycodone oral meds (& tylenol) & it did not make her groggy. Of course everyone is different & respond differently to meds, & I'm sure there's an excellent pain management team at Shriners, however, I just thought I'd mention the oxycodone.

    Don't forget to keep yourself hydrated, get proper nutrition, & nap whenever you can. It's amazing what food, drink, & sleep can do for caregivers!!!

    Hang in there & keep us posted!

    Martha
    Martha
    Mother of Laura, Age 19
    Diagnosed with S curve at Age 13 (49*T/32*L)
    Wore brace for one year (Wilmington Jacket)
    Posterior spinal fusion on April 17, '08 with Dr. Flynn at CHOP (Age 16)
    Fused T2-L2
    Pre-op curves: 41*UT/66*T/34*L
    Post-op curves: 14*UT/19*T/19*L
    Note: At 1 yr. post-op appt, UNFUSED lumbar curve improved to 14*!!
    OK to email me at: malka22@comcast.net

    Comment


    • #47
      Martha--

      Thanks for the note. Sidney urinated on his own (they removed the catheter last night) this morning for the first time. Yay! Now we just have to clear the BM hurdle. He slept well last night, and so did I.

      The pain meds they were giving him were oxycontin (sp?) and percoset. The oxycontin is long-acting and seems to be the culprit for whacking him out so much that he has trouble staying alert, so he is doing percoset only, which seems to do the trick. He's just getting a half a pill as I type this. Pain seems to be under control, with tummy still bloated. thanks for your ideas on loosening things up. I'm hoping today will be the big day.

      He is hungry and asking for food, but juice only for a while yet.

      I see your daughter's fusion starts at T2 as Sidney's does, and that she also had an upper thoracic curve as he did. Guess I'm just looking for situations that are at least a little similar.

      M.E.

      Comment


      • #48
        Hi Mary Ellen,

        I think all things considered Sidney is doing GREAT!! I'm so glad to hear is pain is being controlled and he only needs the percoset. I'm sure that is every parent's biggest fear - that their child's pain won't be managed afterwards.

        I can't tell you how happy I am that everything has gone well for Sidney so far!!

        Best regards and although I am not good at following this advice - take care of YOU too
        mariaf305@yahoo.com
        Mom to David, age 17, braced June 2000 to March 2004
        Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

        https://www.facebook.com/groups/ScoliosisTethering/

        http://pediatricspinefoundation.org/

        Comment


        • #49
          Sidney 4th day post-op

          I can't believe this is the 4th day! Time has flown since surgery on the 13th.

          Sidney slept 5 hours at a stretch last night with essentially no meds at all. Mom, of course, slept just as well. It was the last night in the PICU; he was moved to the regular surgical floor right after lunch.

          Despite lots of liquids, another laxative tablet, and a "fleet soda" a few hours ago, the bowels are still stubbornly resisting any movement. He has been up and walking the loop around the floor.

          We are to be discharged tomorrow, we are told, as Dr. Cahill feels he is on track. The only concern is the left lung, which still shows slight collapse. This afternoon S. has developed a mild fever, which is odd because for two days it has been normal.

          When we leave the hospital we will be discharged to a Ronald McDonald House here in Phil. We had planned to stay until a final clinic on Nov 25 because we live so far away, but now our final clinic will be this Friday, and we will leave that day. I'm hoping he's feeling much better by Friday! He doesn't really feel bad, just stiff and tired after moving and walking--all to be expected, I'm sure. It's the lung and the temp that need to be addressed between now and then. I'm sure they won't let us go if there's an issue on Friday.

          Mary Ellen

          Comment


          • #50
            Hang in there, Mary Ellen!

            I agree with you that if there is any issue at all I would want to stick around past Friday just so they can monitor Sidney, although I'm sure he'll be just fine. I just feel it is better to stay a little longer (not just in Philly, but in terms of being discharged from the hospital) and have them keep an eye on things.

            I know it's up to Dr. Cahill and I am sure he will not take any chances - if he feels he needs to keep an eye on Sidney for another day or two, I'm sure he will
            mariaf305@yahoo.com
            Mom to David, age 17, braced June 2000 to March 2004
            Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

            https://www.facebook.com/groups/ScoliosisTethering/

            http://pediatricspinefoundation.org/

            Comment


            • #51
              Mary Ellen,

              I ditto everything that Maria said in her last post.

              Yes, Laura is fused starting at T2. I doubt that the extra 2 lumbar vertebrae that Sidney is fused will make that much difference as far as how Laura & Sidney will be able to move in the long run (flexibility-wise). Based on the other posts on this thread, it sounds like it's a great idea to fuse to L4 from the get go, to avoid having to extend the fusion in the future (G-d forbid for my daughter). Today Laura is 7 months post op. Before you know it, Sidney will be there too!

              What's the reason why Sidney can't start solid food yet? IMO, that will help him have a BM. Also, stopping the oxycontin will help, as it is very constipating. Any moment now......

              How far away do you live? Going to the RMH is a great idea. Best of luck tomorrow on discharge day. Keep us posted once you get settled.

              Did Sidney have PT & did he do the steps yet? Can he get in & out of bed without help?

              Again, I'm sorry to hear about his lung & the fever. I am praying that they will both be resolved ASAP.
              Martha
              Mother of Laura, Age 19
              Diagnosed with S curve at Age 13 (49*T/32*L)
              Wore brace for one year (Wilmington Jacket)
              Posterior spinal fusion on April 17, '08 with Dr. Flynn at CHOP (Age 16)
              Fused T2-L2
              Pre-op curves: 41*UT/66*T/34*L
              Post-op curves: 14*UT/19*T/19*L
              Note: At 1 yr. post-op appt, UNFUSED lumbar curve improved to 14*!!
              OK to email me at: malka22@comcast.net

              Comment


              • #52
                Mary Ellen,

                I wasn't too worried about the BMs with Savannah. It was a few days after her discharge that she finally was able to go if I recall correctly. Of course she ate almost nothing in the hospital and only was able to drink or have ice after the third day as I recall when there were significant belly sounds. As someone said, I think it's correct that the narcotics will slow the bowels.

                Overall, it sounds like Sidney is recovering on schedule and you will be home sooner than you thought. That's wonderful.

                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


                • #53
                  Sidney Day 5 post op--Still at Shriners

                  We had been planning to leave today but they decided to keep Sidney another night. His bowels did move last night (it was up and down for about 4 hours), and now he is pretty wiped out. They want him to stay until tomorrow and regain his strength and intestinal stability. He is relieved, as he did not feel ready to be released.

                  He did go for x-rays today and the wonderful thing about that was that in the waiting room I met a 19 year old young woman who had been fused at the same levels as Sidney three years ago here at Shriners. She'd had an even longer surgery than Sidney. She was straight and very tall and moved very well. I asked her and her mom if I could ask them some questions about her flexibility and she said, "Sure" and proceeded to bend over easily and touch the floor with her fingers, with her back flat. I was SO happy to see what is possible. She did say she had to work at it, but she takes yoga classes in college and only some of the poses is she unable to do. She made my day.

                  To answer questions: Sidney is eating solid foods, is getting out of bed a lot, and is on minimal pain meds--about 1/2 percoset 2x /day. I'm tired, but we're fine. I think I'll let my husband stay with Sidney tonight so I can get an uninterrupted night's sleep.

                  Mary Ellen

                  Comment


                  • #54
                    Minimal pain meds at day 5? That is amazing.

                    No mention of his fever, so I guess that's good news.

                    Mary Ellen, I hope you are fast asleep as I type!

                    Jen
                    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

                    Comment


                    • #55
                      Hooray for Sidney's progress!

                      Hope you get some well needed rest!

                      Comment


                      • #56
                        Mary Ellen,

                        I don't know where I've been. Didn't even pay attention to the fact Sydney had surgery recently. I hope all is going well (still). Sounds like he's doing AMAZINGLY well. So good to hear. Hopefully he has many more good days, and few, if any, setbacks. Best wishes to you both!
                        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


                        • #57
                          Wow....1/2 a percoset twice a day on Post Op Day 5????? That's incredible,,,if not unheard of!!!!!! Nice going Sidney!!!! Keep up the great work. I'm so happy for you! You'll be home in no time & on to the next phase of this lovely journey! Great story about the 19 year old who touched the floor. I'm glad that helped settle your curiosity on what Sidney will be like down the road, flexibility-wise.

                          Happy Homecoming tomorrow!
                          Martha
                          Mother of Laura, Age 19
                          Diagnosed with S curve at Age 13 (49*T/32*L)
                          Wore brace for one year (Wilmington Jacket)
                          Posterior spinal fusion on April 17, '08 with Dr. Flynn at CHOP (Age 16)
                          Fused T2-L2
                          Pre-op curves: 41*UT/66*T/34*L
                          Post-op curves: 14*UT/19*T/19*L
                          Note: At 1 yr. post-op appt, UNFUSED lumbar curve improved to 14*!!
                          OK to email me at: malka22@comcast.net

                          Comment


                          • #58
                            Sidney discharged on Day 6 post op

                            Hi everyone--we got sprung from the hospital after lunch today and are happily ensconced in the Philadelphia Ronald McDonald House. It's a beautiful new facility with many amenities and feels a little bit like heaven. I highly recommend it to anyone using Shriners or CHOP or another local hospital. They cannot guarantee a space, but we were fortunate to get a room there. It is a very comfortable place at a minimal cost.

                            Sidney is doing fine. He had a little trouble getting into the cab when we left the hospital. Besides being stiff and not being about to slide over once he sat down, he couldn't duck his head to get in the door (he is now taller than his 6' father), so he had to sit in the front seat. It was a short ride, so he tolerated it well. His last blood work showed a slightly low blood count, but that's the only thing to be concerned about. Still has a little bloating and swelling. Still on minimal pain meds, and his spirits are good; he's back to reading a little and is choosing to sit up in a chair to do so.

                            The lastest travel news is that we will be flying home to the NC Smokies on Saturday, after a final check with Dr. Cahill on Friday. Based on today, I am feeling pretty confident Sidney will be up to that. It will be great be at home for Thanksgiving.

                            PS One thing I forgot to add last week: the MRI done the day before surgery showed the syrinx that had shown up on the previous two (done in 2006 & 2007)was completely gone! Amazing.

                            Mary Ellen
                            Last edited by WNCmom; 11-19-2008, 02:49 PM.

                            Comment


                            • #59
                              Excellent news, Mary Ellen!

                              I'm so happy for your family.

                              It isn't the same here in NC without you.

                              Best regards,
                              sharon

                              ps. I echo the comments about the small amount of pain meds Sidney is on. Savannah was in need of far more at that point.
                              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


                              • #60
                                So glad to hear things are going well! I'm so happy for you all!

                                Marian

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