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  • Questions About Surgery

    Hi everyone. I'm having surgery in December, and I know it's a little early to be thinking about all this, but I could use advice from anyone who has been through surgery. If any parents are reading this, my parents will definitely appreciate anything you can tell them to make this experience a little less miserable for them, as well as anything that helps to ease their nerves.

    I have a few specific questions, but any advice is greatly appreciated--

    What should I pack to take to the hospital? What kind of questions should I be asking my doctor now and just prior to surgery? How many days after surgery were you coherent and ready for visitors? How long before you can get up and walk around?

    Thanks,
    Allie

    My name is Allie
    I'm in the ninth grade and I'm 14 years old
    Curves are 45 and 44
    I see Dr. Horton at the Emory Spine Clinic
    I tried 3 different Boston braces prior to the decision to have surgery
    Surgery is scheduled for December 27, 2007 at Egleston
    I'll be fused from T4 to L3

  • #2
    Pack a robe for the hospital and your favorite stuffed animal. You will be on morphin for about 3 days, so you won't care who you see! Your parents should plan on always being at the hospital (at least one of them). We were so far from the hospital, that my daughter didn't have any visitors and she didn't miss them. They get you up within two days of surgery to start walking. They will have you sit up in a chair the next day. You will probably want to get your hair cut to shoulder length right before the surgery. They connect you up to electrodes to monitor nerve function, and the goo they use is hard to wash out of your hair.
    When you get home, you will want a chair in the shower or right next to it. You may get dizzy the first couple of showers after surgery. We moved our daughter's bed to the first floor so she wouldn't have to climb steps until she was more steady (about a week). Have all your favorite comfort foods at home, but your appetite will be slow coming back. Yogurt helps your stomach get back on track fast. You won't feel like doing too much for a couple of weeks. Good luck
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

    Comment


    • #3
      You do not need any of your friends visiting until you are home. They will not enjoy seeing you in discomfort and you will not appreciate seeing them. Wait until you are feeling better and stronger. That seems to be the case with most of the kids. Although you didn't say your age.
      Melissa
      From Bucks County, Pa., USA

      Mom to Matthew,19, Jessica, 17, and Nicole, 14
      Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

      Comment


      • #4
        Two things that my daughter really appreciated were her bed pillow (once she was able to use it) and her favorite blanket. And, I appreciated having my own bed pillow, too. The hospital pillows were like small slabs!! Also, a button down pajama top that she used once the catheter came out and she could wear her own pj's, along with your own robe and slippers (she didn't like the pull up socks). One of the first things she said when she came to in recovery was where was her stuffed animal (Saddie, an elephant) who even went into surgery with her.

        I totally agree with the other comments concerning visitors, she wasn't up to really seeing anyone, certainly not any of her friends. She didn't even want to talk to them on the phone. Someone should plan on being with you at all times, and all night. Hair was an issue, if you can it would be a good idea to braid into pigtails before surgery. My daughter didn't want to do that, had longer than shoulder length hair, and it was quite a mess. After using one of the hospitals dry shampoo caps, we tied it all up on top of her head with a hair band. If you have thick or long hair, the shampoo caps only partially worked, but it did make her feel alot better.

        At home, we had a shower with a seat built into it that she only used once. She also used a toilet seat with arms for several weeks after surgery. The first night home was a little stressful, she couldn't turn her self in bed without the guard rails, so we devised something using an old diaper changing table with bars on the side. We positioned it beside the bed where she could easily grab it on one side, that allowed her to position herself by herself. It was sturdy enough to give her the extra support that she needed to pull herself. She wanted the hospital bed, if anyone had been open that night I would have rented one, but, once we got the table positioned it worked just as well, and was fine. Actually its still there, she won't let me move it yet (9 weeks post op).

        There are many posts on this forum with lots of information. In our case, we brought the ipod, laptop, books, magazines and there were movies and games to borrow at the nurses desk... my daughter did not use any of these things. She really didn't even watch tv till the last day or so, pretty much just slept most of the time. Good luck with your surgery!

        Comment


        • #5
          3 Months Post Surgery

          Here are some thoughts that I would want to share with families preparing to go through spinal fusion. My daughter is doing so well 3 months post op it is just amazing...so, while it is difficult at times, there is definitely a light at the end of the tunnel!
          Tips on getting through spinal fusion:

          BEFORE SURGERY

          • Suggest getting a good hair trim if hair is long…wet, long hair is very heavy post-op.
          • Sarah had a pretty easy time with pre-donation of blood. Drink lots of liquids!! I also donated a unit for her use pre-op, which wasn’t needed but gave me peace of mind.
          • Sign up for a carepage at carepages.com
          • Talk to other parents if possible. My doctor provided me with two names and numbers of his patients whose scoliosis was pretty similar to my daughter.

          DAY OF SURGERY

          • We live 60 miles away, so we spent the night before surgery in Boston.
          • They have nurse liasons in the waiting room who update you every 90 minutes or so which is very reassuring.
          • It is a long day…not much I can think of to make it easier. The hospital does have wi-fi, so bring a laptop if you have one.

          HOSPITAL

          • Try to alternate between parents/close relatives sleeping over if possible…you get little sleep. A single chair pulls out into a bed. Only one parent can stay over. The doctors come by extremely early, so if you aren’t there by around 6am, you might miss them. You will want to have someone there each night.
          • You can use the patient kitchen and make do for breakfast. The social worker stops by and if you ask, they can give you some meal vouchers to use in the cafeteria. You call directly to the patient cafeteria and order from a menu when your child is on a regular diet, you need to remember to call, meals don’t automatically come up. Sarah didn’t want to eat much at all, but did eat some fresh fruit, milk shakes, Italian ice, and a bite or two of other things—not a lot.
          • We had a room at the Inn at Longwood since we live a distance away. My husband and I took turns and at least both took our showers there. Expensive for the week, but worth it. They have a “medical rate”. There are other places too, probably nicer, but this is literally next door to Children’s.
          • Very little storage space in the room.
          • Wireless works in the room, so a laptop is nice if you have one.
          • We received excellent nursing care, but had a different nurse almost every time.
          • Lots of details on the day-by-day hospitalization on our carepage.
          • You really don’t want visitors until maybe the day or two before you come home.
          • Bring comfy clothes that you can walk in the halls in…stretchy necks or buttons to make tops easier to put on.

          COMING HOME

          • Sarah walked out of the hospital, this was easier than the bumpiness of the wheelchair.
          • Every bump in the road will be felt. Try to have lots of pillows and time your departure for max pain med peak time.
          • We set up a bed downstairs and used it for the first few nights. This wasn’t absolutely crucial, but it was nice initially. I slept next to the bed on an air mattress.
          • We purchased a bedside commode and the height/railings, plus a pillow behind her back made using the bathroom much easier. We also used it as a shower seat with a plastic covered pillow. Initially showers were a two person job. My older daughter would support Sarah’s head while I washed her hair. I think it would have been very difficult to stand for a shower initially. I noticed Home Depot carries shower chairs and raised toilet seats with rails which would’ve been less expensive. These things are nice to have, but not absolutely necessary.
          • We used lots of reuseable ice packs (the kind you buy at CVS, flexible) and pillows. You can’t have too many. She’d have at least 3 ice packs on at a time down her back and we rotated 3 more in the freezer. We put the ice packs in a pillow case which was easier than putting them in the Velcro covers that came with them. These were crucial! Make sure some of the pillows are firm and give enough support when you lay back onto them. We also got a body pillow which she liked.
          • I wrote down all medications, when they were due and the times given. It gets confusing when you’re on a 24 hour schedule. I put them out in medicine cups with a note attached at night so I wouldn’t mix anything up in my exhaustion.
          • All the medications cause serious constipation. This was a very big issue and caused a lot of discomfort. We did all the fiber rich foods, citracil, etc. It still wasn’t enough. I tried Miralax and eventually had to use a dulcolax suppository for relief. Use the miralax sooner rather than later and give it liberally—it doesn’t cause anything dramatic or cramping, etc. The colace don’t do it on their own.
          • Don’t pick at the scab, and start using mederma (scar fading cream) as soon as the steri-strips come off.
          • I bought a special “zero-gravity” chair that was recommended on some scoliosis board, it wasn’t really needed. A regular sofa, recliner, bed can all work.
          Debbie, mother of Sarah, my star!
          Idiopathic Scoliosis diagnosed age 10
          Boston Brace from 10-16
          Spinal Fusion T4-T-11, Age 16 - July 2007

          Comment


          • #6
            So, you guys are pretty much telling me to say no to all visitors? What about relatives? Once you are off the morphine, I can imagine you are not quite as loopy, but do you sleep literally all day, every day? The reason I ask is because New Years' Eve will be my fifth day in the hospital, so I was wondering if I might feel good enough at that point to invite some of my family or even my closest friends up to spend some time with me for New Years'.

            Thanks,
            Allie

            PS I'm 14 years old, if that helps you in responding.

            My name is Allie
            I'm in the ninth grade and I'm 14 years old
            Curves are 45 and 44
            I see Dr. Horton at the Emory Spine Clinic
            I tried 3 different Boston braces prior to the decision to have surgery
            Surgery is scheduled for December 27, 2007 at Egleston
            I'll be fused from T4 to L3

            Comment


            • #7
              Hi Allie,

              My surgery is also in December, and I have also received the same advice - that I won't really want visitors until I am home. The only people who will see my in the hospital are my mother, father, stepmother, and boyfriend (of 4 years). Sorry to hear you'll be hanging out in the hospital on new years, but just remember there will be MANY more new years eves that will be MUCH more fun! Good luck
              2000 34*L/39*T
              2007 44*L/53*T

              12.3.07 Posterior Spinal Fusion T4-T12
              (initially planned T4-L1)
              12.18.07 11*L/10*T

              23 years old

              Comment


              • #8
                Allie,

                My daughter is almost 14 and had surgery almost 7 weeks ago. She had it on a Wed. and was home by Monday. She had absolutely no interest in visitors. But if you are still there on day 5, a short visit from friends would probably be fine. Every one is different. Nicole was in a lot of pain and discomfort throughout her hospital stay. When she wasn't in pain, she was tired and sleeping. When she was home and at about a week and a half post op, she was ready to start seeing friends for a short visit. That was just her experience.

                Today when I picked her up at school, her first words to me were, "I feel like myself today." It was so great to hear that!!!

                I wish you the best of luck. You will start the New Year off with a straight back!
                Melissa
                From Bucks County, Pa., USA

                Mom to Matthew,19, Jessica, 17, and Nicole, 14
                Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                Comment


                • #9
                  I am 18 and had my surgery three months ago and boy was it a trip. I have read past threads and they all say not to have visitors however I had many of my friends and family visit me in the hospital and i ABSOLUTELY loved it! It is very comforting to have people around you that care. The first day in ICU you most likely will not remember much. I didn't. The morphine will do you in. I was a little loopy but after the second and third day i was able to control my morphine pump and I had all my family visit. Of course you are going to be a little out of it, thats expected, but it nice to not only have your parents but your friends as well.

                  As far as your experience at the hosipital, bring a pillow from home. It helps with the comfort of being in a hospital. I never wore any of my own clothes till the last day I went home, so just bring an overnight bag. Right before i went in i took pictures of what my back looked like, also my surgeon was kind and had one of his assistants take my camera into the surgery room and took actual pictures of my surgery. If it interests you, i would definitly do it!

                  Good luck and if you have any questions just ask. It is all very clear in my mind. =]

                  Comment


                  • #10
                    Thank you all so much for your advice.

                    Melissa, I actually have followed Nicole's story somewhat and it sounds like she's doing great. I'm looking forward to being at that point of "feeling like myself" -pain free!!

                    As far as pain, was it mostly controlled while you were in the hospital? What did you do to ease your own nerves before you go into surgery? I'm not all that scared yet, but I'm sure as the time gets closer I will be, and I really don't want to be stressed and freaking out when it gets really close.

                    Thanks again,
                    Allie

                    My name is Allie
                    I'm in the ninth grade and I'm 14 years old
                    Curves are 45 and 44
                    I see Dr. Horton at the Emory Spine Clinic
                    I tried 3 different Boston braces prior to the decision to have surgery
                    Surgery is scheduled for December 27, 2007 at Egleston
                    I'll be fused from T4 to L3

                    Comment


                    • #11
                      preparing...

                      Hi Allie,

                      I've gotten lots of great advice there about how to prepare. Search for my first thread I posted, and you'll see it all. For me, the more I know about what to expect, the better I feel, but that's just my personality type. If you're that way too then continue to ask questions, read and research. I've also found yoga really helpful -- it's really put me in the mind set that my body can handle this surgery, and I am in the best possible "starting point" I can be at. With four months until the big day, I'm feeling pretty calm and ready to get on with it!

                      Luck!
                      2000 34*L/39*T
                      2007 44*L/53*T

                      12.3.07 Posterior Spinal Fusion T4-T12
                      (initially planned T4-L1)
                      12.18.07 11*L/10*T

                      23 years old

                      Comment


                      • #12
                        Will you have your surgery at Egleston? My daughter had hers at Scottish Rite and they had a portable DVD player for her to watch and plenty of choices of dvds. Have your parents bring whatever you would do to relax at home with you. We also played cards. They do give you meds that make you relax. My daughter complained about having to get up before 6am and we told her she could nap all day!
                        T12- L5 fusion 1975 - Rochester, NY
                        2002 removal of bottom of rod and extra fusion
                        3/1/11 C5-C6 disc replacement
                        Daughter - T7 - L3 fusion 2004

                        Comment


                        • #13
                          hey

                          hey no u really wont be in the mood for visiters my friends moother seriously didnt understand thins point at all
                          when im going for my next surgery im making sure no1 comes in its so tirin and so hard to be nuce wen u dont want them there!!
                          the new years thing is pretty cool because i think like the nurses and all will bin the place will celebrate to so u can have a different celebration with them!!
                          16 year old getting ready for more surgery

                          Comment


                          • #14
                            At this point it looks like I'll be having it at Emory, but there is a minimum age requirement of 16 for surgery patients there. The doctor said he "knows some people" so he may be able to pull some strings to get me in at Emory University Hospital, but if not, then yes, it will most likely be at Egleston. I actually have a portable DVD player at home so I'll be sure to pack it since everyone is suggesting that.

                            What kind of car is best for the ride home? I know I'll be needing lots of pillows. I've decided that I'm not letting my dad drive me home...he's an evil driver...likes dirt roads, going fast over railroad tracks, jerky maneuvers, etc... so that's why someone else will be driving me home

                            Thanks,
                            Allie

                            My name is Allie
                            I'm in the ninth grade and I'm 14 years old
                            Curves are 45 and 44
                            I see Dr. Horton at the Emory Spine Clinic
                            I tried 3 different Boston braces prior to the decision to have surgery
                            Surgery is scheduled for December 27, 2007 at Egleston
                            I'll be fused from T4 to L3

                            Comment


                            • #15
                              You would be better off at Egleston than Emory. For the ride home, a large car with good shocks works best. My daughter rode in the front of our Escape with the seat leaning back. They gave her pain medicine right before we left the hospital and she had an almost two hour ride home. We would say bump whenever we saw a bump coming so she could be ready.
                              T12- L5 fusion 1975 - Rochester, NY
                              2002 removal of bottom of rod and extra fusion
                              3/1/11 C5-C6 disc replacement
                              Daughter - T7 - L3 fusion 2004

                              Comment

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