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  • Surgery in 2 weeks

    The background story is here: http://www.scoliosis.org/forum/showthread.php?t=107 and http://www.scoliosis.org/forum/showthread.php?postid=19472#poststop

    (Forgive me, but to put these questions in the most appropriate place I just copied from my other post)

    NOW - surgery is scheduled for December 12 - a couple of weeks. Pre-admission tests will be Dec. 8. The proposed fusion, as of last July, is from T-4 to T-11, posterior approach. This will stand if he hasn't progressed much, but from looking at him and the way he feels, I think his curves have progressed. We'll see on the 8th. He has a very noticeable rib-hump and I know they are taking the bone grafts from his ribs. I know the full defect can't be corrected, but I sure hope it's much less noticeable.

    I bought Dave Wolpert's book on scoliosis surgery (the 2nd edition) and it's been helpful for us. What advice do you, as adolescent surgery patients and parents of surgery patients have? We live about 125 miles from the hospital - what's your experience on the trip home if you had to drive a distance? Most of it will be on an interstate. Practical advice - any items that you found to be helpful - or not? Do we need to get a raised toilet seat, a shower chair? Exercise - our winters tend to be very mild, with occasional blasts, but our big problem in our semi-rural neighborhood is lots of large, loose dogs. I fear one of them jumping on David if we go out to walk - that would be bad. Should I try to find an inexpensive treadmill? Returning to school - the post-op plans indicate a return at 3 weeks - is this realistic? His school is huge and very spread-out. I already have a 504 plan in the works for his return, but that 3 week date seems terribly optimistic.

    Okay, that's A LOT to throw out there right now - I'll ask more later. Thank you in advance - you are an awesome support community.

    SanD
    Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
    Diagnosed Feb. '03, T36*, L28*
    Boston TLSO brace
    May '03 T44*, L36*
    July '04 T54*, L45* d/c brace, not holding curves
    June '05 T68*, L48*
    Initial post-surgery estimate T55*, L45*

  • #2
    Hi s&d,

    Where do I start? My daughter will be one year post-op in less than two weeks and her fusion is a little longer than what they are planning for your son.

    Some of the best advice some people will offer you for the long ride home will be lots and lots of pillows. Some swear by the body pillows. Most important advice is to make sure he takes pain meds. before he leaves the hospital.

    Most people will advise a shower chair-we have a built in one which was perfect-but most don't really need the toilet seat. Some people suggest a hand held shower head.

    You asked if returning to school at 3 weeks is unreasonable--not really. Jamie's doctor ok'd her to go back at 3 1/2 weeks, but because it was Christmas break she returned 1/2 days at about 4 1/2 weeks. She was back to full time at 6 weeks. Some kids have stayed home as long as 9 weeks, so please remember every child is different. You will know when he is ready to return. The first few weeks he'll be very tired and with a large school, he might want to stay home a little longer than 3 weeks.

    I would suggest being very careful when out walking. Make sure there isn't any ice/snow for him to slip on. The dogs would also be something to watch out for. As for buying a treadmill, I wouldn't. You can always take him to a local mall to walk if need be. It serves two purposes-one he gets to walk in a safe environment and two it gets him out of the house.

    We didn't buy anything special for Jamie. We did bring her bed downstairs because just going upstairs for a shower was very tiring for the first few weeks. We have a straight-backed, hard wooden rocking chair that was the most comfortable chair for her to sit in.

    I hope this answers some of your questions for now. Good luck and feel free to ask any other questions you have.

    Mary Lou

    Comment


    • #3
      Hi SanD. My name is Ross. I'm 15y/o and from SW Louisiana. I had the posterior spinal fusion from T2-L3 September of 2004.
      Ok, just starting off, we had 5 hour drive from the hospital in Shreveport to my house. I thing I have to say is lots and lots of pillows. Fluffy pillows, make sure there are no smashed pillows. They work out really well. All I needed to make it home was a pain pill, 2 stops, and a nap. Make sure you don't go very fast over bumps, and go slow on turns. The gravity pulls on your body alot when you turn a car, but you never notice how much until you have an incision from your neck to your butt crack (Hope you don't mind me saying that
      3 weeks does not seemlike a very long time considering the type of operation. It took me 8 weeks before I went back to school. You may say 3 weeks now, but when you get to that point, I don't really think that David will be going to school by that time. For the dogs, I don't really know what to tell you. But, I will tell you to make sure and get a shower stool, or just an old chair that will fit in the bathtub or shower. Those come in handy alot.
      I hope that this helps you some. You can email me or just post again if you have any questions. My email addy is on my signature at the bottom of this thread. Take care and keep us updated. Ross
      Matt

      Rod Removal Surgery 2/4/2008
      www.myspace.com/ross40728
      Had surgery on 9/20/04
      81* Scheuermann's Disease
      40* Left Thoracic Scoliosis
      U Rod Inserted
      Fused from T2-L3

      Comment


      • #4
        hi s&d
        like marylou and matt said lots of pillows for the ride home and a pain pill. We definitely needed a raised toilet seat for my daughter, which we hadn't bought before her surgery and the day she got home my husband had to run out and get one. You will find a place when you get home that your son is comfortable and try and make it where there are people around. When we got home from the hospital we brought our daughter into bed and she was not comfortable, she found a spot on the couch propped with lots of pillows and her feet up on an otterman and that's where she would stay during the day. Alot of people say a recliner is comfortable for them also.
        My daughter was out of school for 9 weeks and started back the first week half days and then went full. It is very tiring for them in the beginning when they first go back and sitting in the desks all day isn't the most comfortable either, but they get used to it. My daughter just had her "1 year" anniversary and is doing great. The stress before is worse then the recovery.
        Good luck and anymore questions ask away
        Jennifer

        Comment


        • #5
          Thanks!!


          You guys are great!

          I went ahead and purchased a shower chair while I was out running errands this afternoon. I'll hold off on other stuff, thanks to your good counsel. There have been times recently when I should have had a shower chair so this is a good buy. We have hand-held showers in both bathrooms so I don't have to fool with that. Mary Lou, the mall is a good idea, thanks for the suggestion. We tend to avoid it if at all possible, but by then we might want the change of scene.

          We scheduled his surgery the week before we get out for Xmas break so he could take full advanatage of the time off and hopefully not miss much school - he'll have to take his semester finals early, but that should be okay. I teach computers & technology to K-5 kids in elementary school and there are NO subs available for this area, so this timing should help me out, too, as the elementary kids will just be doing fun and games that last week before holiday and I can turn that over to a regular sub.

          Ross, I've read several of your posts over the last year or so, and since you're right next door in Louisiana, I want to say "Howdy, neighbor!" We're about halfway between Dallas and Shreveport. In fact, before we were referred to Scottish Rite in Dallas we thought we might be going to Shriners in Shreveport - our orthotist at the time had recommended it. But our orthopedist here in town referred us to Scottish Rite and it's worked out very well for us so far.

          And Ross, I read what you said about Rita hitting you so hard - I'm so sorry about that. You, your family, and all the people who suffered from these hurricanes are in my prayers. I have quite a few Katrina and Rita evacuees in my classes and bless their hearts, they reach out for hugs and want to share their stories. They are so sweet. A few have been able to return home. And when things start getting tough for me in a couple of weeks, I'll think of you.

          I wish David would email you and talk about his concerns, but he's sort of the strong, silent type. He will at least bring it up to me now and then and I sort of ambushed him with a short video from Scottish Rite. He had me replay the part that showed how the instrumentation worrks, but had little to say about the rest of it. Maybe because it was about a girl and she was all bouncy and blonde and drill-teamy, and he is decidedly not bouncy. Or blonde. And not drill-teamy, or anything-teamy unless, maybe, it involves XBox.

          Again, thanks for the good advice, and I'll be sure to come back to the experts when I have more questions.

          SanD
          Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
          Diagnosed Feb. '03, T36*, L28*
          Boston TLSO brace
          May '03 T44*, L36*
          July '04 T54*, L45* d/c brace, not holding curves
          June '05 T68*, L48*
          Initial post-surgery estimate T55*, L45*

          Comment


          • #6
            Here's something for you to think about. You said you have a 504 plan in place for when he returns to school, but have you talked about what he will do during fire drills? Jamie wasn't allowed to be in crowds for a long time after surgery, so what the school did was call her to the office so she wouldn't be in the crowds especially when everyone was in a hurrry.

            Since David won't talk too much about his upcoming surgery, you might want to mention a website/forum called SpineKids to him. It is a great site for kids! This forum is mostly parents and SpineKids is mostly teens whch works out well.


            Mary Lou

            Comment


            • #7
              Good Advice!

              I must admit I hadn't even thought about fire drills - or tornado drills - even though I work in an elementary school and we have drills every month, just like all the schools in the district. I'll contact the counselor tomorrow and see what they normally do in such circumstances and emphasize that he can't be in a situation where he could be bumped or jostled. And they'd just have to excuse him from "assuming the position" in the tornado drills. You have to get on yoor knees and crouch down, covering your head or neck with a book or something similar. And that's after they go to a place away from the huge walls of windows at that school, which might involve a good bit of walking. That position is hard for healthy people to hold for long.

              I did print out some things from SpineKids and he showed some interest. I kind of think he wants me to be the filter - he doesn't want to bump into anything that might alarm him or cause undo worry (that's what I'm supposed to do - Worry!) - talk of complications or less than ideal results. The stuff I've shared with him so far has been pretty upbeat and encouraging, so we'll aim for that.

              Thanks again. I suspect I'll be leaning heavily on this forum for a while.
              SanD
              Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
              Diagnosed Feb. '03, T36*, L28*
              Boston TLSO brace
              May '03 T44*, L36*
              July '04 T54*, L45* d/c brace, not holding curves
              June '05 T68*, L48*
              Initial post-surgery estimate T55*, L45*

              Comment


              • #8
                SanD,

                Jamie had a very quick recovery and except for some minor things, her experience was great. She would probably tell you that the worst part of the whole experience was this past summer and the next two weeks. Most of her restrictions were lifted within 3-6 months but some of them are in place for 1 year and they are as follows: no amusement parks; no riding our 4-wheeler; no diving into the pool; and no hunting (which starts tomorrow and runs for the next two weeks). Otherwise she wouldn't complain about too much, so what she would share would be positive about her experience. Tell your son (and you too) he can e-mail Jamie and/or me at Spinesupport05@aol.com with any questions or just to talk.

                Mary Lou

                Comment


                • #9
                  SanD,
                  My daughter, like Mary Lou's had a pretty long fusion T2-L2 on 3/15/05. Like everyone said, don't buy anything special. The only thing we bought for Crystal was a body pillow. It was her best friend. Use lots and lots of pillows and pain meds for the trip home. Try to get the meds filled before you leave the hospital. If not, make it your first stop before you fill up with gas. Shriners in Portland was real good about making sure Crystal had a pain med about 30 minutes before we left for home. We had to drive 250 miles one way, home. That's 4.5 - 5 hours on a good day. Stop and get your son out to move around. It will help to keep him from becoming stoved up by the time you get him home. He may object at the moment, but will be glad he got his legs out and stretched them. However, make sure you have dad or someone with you in case he should be light headed and you need help. Also, we found that a pillow between Crystal's back and the back of the toilet was very helpful when she had a bowel movement.

                  On recovery, each child is different. Crystal was back in school at 3 weeks. She would go anywhere from 1/2 day to a full day for the first two weeks. She let her body rule her on that decision. She went to her prom at 4 1/2 weeks post op. She was back showing her show sheep at 12 weeks (and probably shouldn't of been, but her sheep are pretty well trained and know their job), by mid-July had a job at McDonald's and has only been slowed down by 7 kidney stones at the beginning of this month. Now that they are gone, she is going 900 miles an hour again.

                  As far as talking about her surgery before hand, Crystal didn't. I asked her one day if she was bothered by it. Her response was "No, because I have God on my shoulders and he won't let anything happen to me that we can't handle." Pretty strong conviction from a teenager to a parent.

                  Our advantage with our school is that there are only 200 students K-12. So, pretty small. They allowed Crystal to leave early for her next class, etc. The nice thing about a small school is that the teachers really kept an eye out for her. One of them caughter her shooting baskets in the gym one day by herself. I guess she thought if no one was in there she wouldn't get caught. He caught her and got after her and ushered her out of the gym. Our biggest challenge now is making up a PE class she couldn't finish last year because of surgery. If she has to take it next year, she will be the only Senior taking PE, because her doctor won't release her for PE until the end of next April. Our superintendent said he would allow her to play summer league basketball next summer for credit, the coach is a certified teacher. Thank goodness for that one. Basketball season for her is going to be tough for her. It will be the first time since she was in the third grade that she hasn't been able to play ball. She watched practice the other day, she got pretty depressed, especially since both of her sisters play too.

                  Also, to let you know the Scottish Rite Hospital for Children and the Shrine Hospital for Children are all supported by the same group of men. These men work hard at making sure there are lots of funds there to take care of the children that need these hospitals.

                  Keep us posted as you get closer to surgery.

                  Nikki

                  Comment


                  • #10
                    Hi SanD,

                    When I got back from my surgeries my parents did have a Shower Chair, Toilet seat, and Walker for me. I didnt like the Shower Chair, but I needed it very much. I know your son wont like this but either you or your husband will probably need to help your son with the shower. Just tell him to hold a towel over himself.

                    The toilet seat is a good idea because you dont have to bend down as far. After sugery your skin kinda feels tight in certain areas and less bending is always good.

                    About the treadmill. Unless your son likes walking dont bother. I know I would always get annoyed when I was told by my dad to walk around a bit (and he was just saying to walk a little around the house). Instead just do what my Dad did and tell your son to walk carefully inside the house.

                    About school, 3 weeks sounds really short for me. Im not sure though but depending on how severe the surgery is he will probably need more time off. What my parents did was they called the school and asked for a tutor. The tutor is payed for by the school and they are meant to teach kids homebound from surgeries and injuries just like regular school.

                    Anyhow I hope all this helps you out. Dont stress out to much and your son will do fine.

                    Comment


                    • #11
                      s&d
                      Well it looks like you got lots and lots of great advice. My son is 2 weeks post-op today. Our ride home from the hospital was only 1 hr, he took his pain pills in the car and slept the whole time I was driving home. He really did not want to leave the hospital because he felt he really needed that electric bed to put him up and down. Once we arrived home he was so happy.
                      He took a shower the next morning and it totally wiped him out, he was shaking and in extream pain. I read about using a shower chair on this great forum and quickly went to the backyard and brought in a small patio chair. It fit perfectly in the shower and made all the difference in the world for him. Actually he just got out of the shower and said it was still a little wearing but he loved the way the water felt and wanted to stay in there all day.
                      My sons surgery was scheduled the week before Thanksgiving and is not expected back in school till after Xmas break. He will have a tutor coming to the house to keep him up with his school work. As of today he has not started working with the tutor yet.
                      After the surgery was all over he confided in me that it really was not that bad and that the worst part so far of this surgery was worrying about either dying during surgery or of being paralyzed. You see during his pre-op appt his surgeon decided to tell us the possible complications of surgery. Great this freaked my son out his silently started crying and never really spoke to me about his fear in hearing all of this. I know a doctor must inform us of these possible complications but did it have to be in front of my son.
                      Something to keep in mind, once my son was moved to ICU from the recovery room the nurse assigned to him gave him a glass of water and a Vicodin pill. This caused him to vomit repeatly for hours and since he probably vomited up the Vicodin he was not given any more pain meds for awhile. You see these nurses are on 12 hr shifts and I think he was just not thinking. You never give a person anything by mouth after surgery till you hear the stomach making noises showing its up and running. The next time he brought his pain med in a syring and put it in his IV. This was the only big mistake we faced as far as hospital staff errors. From then on we asked constantly what they were giving him and when he was due again for pain meds. Between my husband and myself we were with him 24 hrs a day for 5-days in the hospital. He really mostly slept, he did'nt want to eat almost anything. He never watched TV and only played his PSP (video game) a few times the last few days.
                      Since we've been home he would love to just rest in bed all day. I push him to get up and move at least a few times a day he finds that he actually feels better and can stay up longer the more he moves. Distraction is the best medicine, he loves a friend of ours 1 yr old son. So when he comes to visit my son laughs and actually plays with him a little. Yesterday my son baked some cookies he saw on a cooking show. Of course we helped roll out the dough but it kept his mind busy and he felt better. Now remember this is 2 weeks post-op. He is still taking his pain meds between every 4-6 hours and not sleeping all that great. We finally gave him 1/2 of a tylenol pm and he slept for 6 hours. I hope this helps you and your son prepare for this surgery. Good luck if you have any questions just let me know.
                      Yvonne
                      Mom of Jeremy with Scolosis 16 yrs old
                      Fused T-1 to T-11 Nov 14, 2005
                      Kaiser Oakland, Dr. Ravi Bains

                      Comment


                      • #12
                        i wore my plastic jacket home, and had regular stops before we reached home.
                        with the shower, i suggest using a walk-in shower. i went to the holiday-inn to have my showers as i dont have a walkin shower at home.
                        school. i missed the whole first week and a half from sch, and then went in on half days. (it was september so it was the important stuff at the beginning, and because i started sixth form so i was doing new subjects at an advanced level).
                        i continued doing half days for about a month.
                        i went to my after-op appointment on the 14th nov, where i was told that i didnt need to wear my plastic jacket any more. i was i havent been wearing it since that day. it did feel strange at first, but im geitting used to it. the only thing i cant get used to is that i cant feel most of my back because they cut the nerves..... does anyone else have that problem??
                        anyways i hope that your op is a success and good luck!!!!

                        love sheena xxxxxxxxxx

                        Comment


                        • #13
                          Thank you for your good information. I'm keeping a few notes, especially some things for my husband to refer to when he takes the bedside shift with David.

                          I'm so very thankful for this forum. I trust our doctors, but there's nothing like the voice of experience!

                          CaMom, how's your son now? Sleeping any better? Pain meds or down to Tylenol? Did your son have a thorocoplasty (rib graft), too? I've been told that pain is sometimes worse than the "main" pain. I've been honest with David about that, but we haven't talked about it all that much.

                          David's nerves about the surgery have passed and he's "on the runway, waiting to be cleared for takeoff". Pre-op is day after tomorrow, and assuming they "clear him for takeoff", surgery will be next Monday, the 12th. His anxiety and mine have largely been calmed by all you wonderful patients and parents here on this forum.

                          SanD
                          Son, David, age 16 1/2, had T-5 to T-11 fusion/instrumentation surgery at Texas Scottish Rite Hospital Dec. 12, '05 to hold major curve
                          Diagnosed Feb. '03, T36*, L28*
                          Boston TLSO brace
                          May '03 T44*, L36*
                          July '04 T54*, L45* d/c brace, not holding curves
                          June '05 T68*, L48*
                          Initial post-surgery estimate T55*, L45*

                          Comment


                          • #14
                            Remember that the nurses are human too and do make mistakes, unfortunately. That is why it is so important for you to keep a log on when you child gets pain meds., etc. That way you will know when it is time and remind the nurse if you need to and you will know that maybe you should question a medication or procedure.

                            If any of you have to take daily meds that you child aready takes, like asthma meds., you will probably have to turn them over to the nurses. We had to. That was hard to do, but you also need to remember that the nurses may not realize that they need to be given and you need to remind them about it. We had to remind them about Crystal's asthma medications everyday.

                            Don't be afraid to question and remind the nurses.

                            'til later,
                            Nikki

                            Comment


                            • #15
                              i agree with kris. the nurses dont always do things right. dont worry, i dont mean big things. but with me, they gave me my medicines and just put them on my bedside table and walked out again, they didnt actually stay in the roo and make sure that i ate them. so what i ended up doing (i was very depressed in hospital and was determined to get out and get back to normal), i just threw them away. i dont think my parents even knew until we got home and i told them.
                              another thing is that before they let you go home you need to go to the toilet properly. with me, they told me on the friday that iwould be going home the next day so i go al lexcited, and then on saturday they told me that i couldnt because i hadnt been to the toilet. they wanted to give me laxitives and everything. i was really even mor depressed with this and refused. my parents were very annoyed as well because the nurses should have started giving them to me at least a day before. the lucky lucky thing was that i had hot-orange and that made me go, meaning i went home that day!!! the point is that make sure you have a day to work towards as going home. make sure that all the specific things are done because you have to meet their list of criteria. their list includes going to the toilet, getting out of bed at least once by yourself (the occupational therapist (OT) ) does that with you, walking (but you start that from about 3days after if not before).
                              hope that helps you a bit!!
                              speak soon
                              sheena xxxxxxxx

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