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14 yr old son surgery in june questions

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  • #31
    Hi Gigi,

    First, don't beat yourself up! You are wonderful mom, as diplayed by the time you are spending on this board researching trying to help your son. He is increibly lucky to have you!

    I would start with your massage therapist friend first, and try and get your son to give yoga a whirl. Here's a link to a yoga relaxation exercize:

    http://openmindbody.com/guidedrelaxationscript.htm

    As far as my daughter's recovery, we are doing pretty well. It has been a rough road, but every day gets a little better. She goes for her follow up visit to her surgeon on Thursday, and he'll decide if she's ready to go back to school the week of the 18th, maybe for half days. We'll see, as she's definitely not ready right now.

    She's sleeping about 15 hours a day, sitting in the recliner 6-7 hours or so, but not able to be sitting up or walking around more than an 1-2 hours a day, but she is going 4-5 hours between doses of pain meds which is a big improvement. The last couple of days she is more alert and her humor seems to be coming back. She still needs help in the shower, and gets dizzy when she stands up too quickly, but she's getting better with each passing day. Today, for the first time she went in the kitchen and made herself a snack, and stepped outside for about a half hour to hang out in the back yard with her friends.

    Her back is so straight and beautiful, I can't believe the difference. I just hope she has less pain than before the surgery once all is said and done!

    Susanna
    Susanna
    ~~~~~~
    Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

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    • #32
      Okay, I guess I'll let all of you in on a little secret--I still have a stereo with an 8 track player in it! lol

      As for exercises, swimming and physical therapy and walking are the only things Jamie is allowed to do right now and p.t. just ended. In therapy, they had her in the pool for about 40 minutes and then upstairs for the regular therapy for about an hour. In the pool, she did mostly work on her legs, but she did do two upper body exercises with floats in her hands for added resistance--1) she would spread her arms out the whole way towards either side and pull them back in until her hands touched and then back out again-30 times; 2) she would then hold her arms out straight in front of her and pull them back until her hands touched her chest-30 times. Upstairs, she did I think three different things using a stretchy type strap attached to the wall to do upper body things. 1) she would hold the handles of the strap and pull downwards with her hands towards her hips; 2) same thing except pulling towards her chest and 3) same as in the pool-stretch arms out as far as possible and back in until her hands touched in the front. She also did "crunches" while lying on the table. We laughed the first time they told her to do crunches, because that is one of the things we figured out before surgery that she wouldn't ever be able to do properly. Actually,all they really want her to do is tighten her stomach muscles, because with her long fusion, that's all she can do, really. We are expecting a home program later this week, so I'll have to let you know what's in that program.

      Mary Lou

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      • #33
        Hello:

        Mary Lou: The swimming is also good to know about. We have a summer membership at a local pool, but we may need to look into something for the fall. I know runners who have injuries do water running because it is no impact, so I bet the swimming and the exercises would be very helpful. Let me know how that goes.

        Nikki: I didn't think about the creek possibly being a "toilette" for the cows! I once got giardia from just rinsing out my mouth when on a hike at Mt Hood. I told the dr my dog drank a lot of water and didn't get sick; he looked at me and said "dogs eat poop". Pretty funny. How is Crystal's week at school going? And is your daughter with the brace doing ok? Does seeing her sister go thru surgery make her better about her brace, or was she good with it from the beginning?

        Susanna; you are very sweet. Thank you for the mom vote of confidence. It sounds like your daughter is slowly getting better; if she can fix her own snack, that is a good sign! The yoga site seems interesting. And I guess I didn't think about the kids backs straightening out so soon. That is a good thing.

        Thanks again!!!

        Gigi

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        • #34
          Gigi,
          Hmm. My daughter with the brace. Now that could be a long story. She's better about it since Crystal's surgery, simply because she has both Crystal and I ragging on her about wearing the brace. She wears it everyday, but somedays she doesn't put in all her hours in the silly thing. She has hated this brace from day one. If she ever gets out of it I may have it bronzed like a baby shoe. She has an appointment at Shriners on the 20th of April. So, we will know more then. I am hoping the measure some improvement, but I am afraid she had a major growing spurt during the last 30 days. Her brace seems a lot shorter now. I had it checked while we were at Shriners for Crystals surgery, but that was three and a half weeks ago. I don't know if a kid can grow that fast or not. I just really noticed it looked a little short this past week.

          Crystal had a great day at school on Monday, but it absolutely wore her out. She slept most of the day yesterday. When Craig and I had to go doctor on baby calves that had scoures last night, she wanted to go along to see the calves. She hadn't been to the ranch for over three weeks. Beings we had to rope calves from the back of a pickup while trying not to run over other calves or hit cows that wouldn't get out of the way, it got a little western once in a while. For Crystal's sake, I am glad my pickup has good shocks. I was going to have her sit in her dads pickup so she didn't get jarred around. She finally admitted this afternoon, after being an absolute grouch today and taking very little pain medication, that she was pretty sore. I asked why she didn't take any pain medication. She told me she is very concerned about becoming reliable on the silly things. I told her I keep a good eye on that stuff, so if I thought she was taking to much I would cut her off from them. She finally agreed to take a codience about 8pm and then took a morphine at about 10pm. Hopefully, she will get some much needed rest. She was pretty upset that she let herself get so sore. I told her next time to let me know and we would start with the mildest, regular tylenol, and work up until she felt better.

          Well, Crystal is up because she can't sleep. So, am going to coddle her for a little while. Don't do that to her very often. I kind of think she needs it tongiht.

          'til later,
          Nikki

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          • #35
            Susanna,

            Good luck with the follow-up appt. today. Let us know how things go.

            Gigi,

            The pool worked very well for Jamie. When she started p.t. she was about two months post-op. Up until that point, she wasn't allowed to do anything--not even bend--so I couldn't imagine starting regular p.t. without using the pool first. We chose the facility we did because they have the pool. I was glad they continued the pool therapy even once they started the regular therapy. One of the best parts of the pool therapy was the use of the jets afterwards to massage her back. Some people say their kids really have a hard time with people touching their backs even months after surgery. Jamie doesn't have that problem at all. She hasn't actually done any swimming at this point, but I am trying to convince her to join an indoor pool to get some exercise between now and when we open her grandma's pool in the summer.

            Mary Lou
            Last edited by ; 04-07-2005, 06:31 AM.

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            • #36
              hope recoveries going ok

              Hi folks. I think I may actually have time this aft to go look for the body pillow. It has been one of those weeks, and even the evenings...I am sure you all know how that is.

              Nikki: I was wondering about the pain meds after as well. Griff is reluctant to even take a tylenol, so I can see him pushing himself like Crystal, but on the other hand, my side of the family has some "addictive personality" issues, so I am concerned, too. I think, after the worst of the pain is over, to start with an OTC to see if that is enough is really smart. And you said your calves have "scoures"; what is that? And, on another note, when is the prom?

              Mary Lou: how does the PT thing work? Does your dr suggest certain exercises or refer you to a PT? I know they helped my older son when he had a bad ankle, so I think it could be beneficial. And maybe if you let Jamie get a new bathing suit (they are already out in the stores!!) she will want to go swimming!

              Susanna: how did the appointment go? And do you do yoga classes?

              Better run; take care and prayers to all

              Gigi

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              • #37
                Gigi,

                When Jamie went for her two months checkup, the doctor had her bend from the waist and immediately said she needs some p.t. to work on flexibility. She has very tight hamstrings which keeps her from bending as much as she should. The doctor handed me a prescription for p.t. before we left the office. I chose where to take her for p.t. and it wasn't at the hospital where the surgery was performed. There was two main reasons for going where we did: 1)the pool and 2) the facility is located two blocks from school as opposed to 20 minutes away to the hospital. In the beginning, I took her to p.t. during gym class. The first appt. was an evaluation to see what needed to be worked on, but they were in touch with the doctor as well.

                A new bathing suit. Hmmmm....that's an issue right now. We've been shopping for over a month and can't find one that suits her. She wants a bikini, but they are cut way too low to suit her (of course I'm not complaining) and she has now set her mind on one with a bikini bottom but more of a tank top on top, but we can't find what she wants. She loves to swim, but I think she might be a little nervous. I know once she gets in the water, she'll be fine.

                Mary Lou

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                • #38
                  Gigi,
                  I understand the addictive personality. I have it on both sides of my family. A whole line of drug & alcohol abuse. I monitor Crystal's prescription pain meds very close because of that. I try to let Crystal make the calls on her pain meds. She knows about the addictive personality issue in my family, so she is very alert to it. I try to get her to use regular tylenol if the pain isn't too bad. However, there are times we do a little to much and she really needs a pres.pain med. So, you just have to really watch it. Try to explain to Griff that it is okay to use them as long as they aren't abused and you will be sure to watch that they aren't. Crystal's last prescription of 30 pills lasted two and a half weeks. She had some tough days in there and she had some great days. She usually only uses her pres.pain meds at night anymore. She tries to use OTC's the rest of the time.

                  What are calf scoures? Every ranch wife's nightmare. It is an extreme case of the squirts. It is generally problem this time of year. The grass is starting to grow and get lush, the rich milk from the mother cows, and too much rain are the causes of it. We have actually been lucky. We haven't lost any calves and only had to treat three of them so far. But, we really keep a close eye on them. A calf can dehydrate and die within 24 hours of onset. The other part of it is that when you are done treating them you have to come in, shower and immediately wash all the clothing you had on while treating them. It can be transmitted to humans. So we are so very cautious with it. Luckily our utility room has a shower in it. So, its in the door, strip off the clothes, and get everything washed and scrubbed down.

                  Crystal's prom is next Saturday. She is so nervous. Her dress is beautiful, her back is straight (that's the best part), her date is a handsome senior, so how much better could it get.

                  Well, got lots to do to. Have to go get groceries, ugh.

                  Prayers to all.

                  'til later,
                  Nikki

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                  • #39
                    hello

                    I found the body pillows at Fred Meyer (hope you have a good store to go grocery shopping at, Nikki-I do big shopping at Winco) and there were cordoruy ones and plain cotton ones. There are also those arm rest type pillows. Any specific recommendations?

                    Also, I have read some of your posts on other threads; and this made me wonder; do you have a suggested presugery checklist? Now that you have been through this, a list of questions you recommend we ask? Things like pain meds and how it is managed and how long will the catheter be in and how much weight can he pick up and when and should he have physical therapy and will he have pt....you see how it seems so scattered?

                    So, instead of reinventing the wheel (or going quietly crazy), I thought I would check with you all first.

                    And how are all your kids doing?

                    Gigi

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                    • #40
                      Gigi,
                      As far as arm pillows go, we didn't buy any. Crystal has so many pillows on her bed on a normal day, I don't know where we would of put her. However, there are moms here that have bought them for their kids. I do recommend a neck pillow, it is one of those u shaped pillows.

                      As far as questions, there are lots of them. Let me do a little writing down and then I'll post some for you. I am sure others will post questions for you too.

                      As far as what you take to the hospital. You will take way more than you need. Crystal packed everything but the bathroom sink, and that is because I wouldn't let her take it. She's a 16 year old girl and you know how that goes. Any how, I brought home more dirty clothes than she did. You will most definitely want to take elastic waisted pants, like sweats or warm ups, loose fitting shirts, underwear, socks, non-skid slippers, robe, a few magazines, cd player, cds (Crystal used hers alot), batteries for CD player, tooth brush, toothpaste, comb, mouthwash, and anything else boys need for their daily rituals. For yourself, everything like you were taking a trip away from home.

                      As I think of more, I'll post for you.

                      Love and prayers.
                      'til later,
                      Nikki

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                      • #41
                        Gigi,

                        It's okay that your thoughts are scattered. You sound just like the rest of us right before surgery. That tells me you are trying to be as prepared as possible, which is great. I had my family prepared for the worst, as far as the amount of pain to expect, the length of the hospital stay, etc. and we ended up with the best. It is better to be over prepared, if that's possible, than totally unprepared.

                        I think the most important questions to ask right now are 1) how long does the doctor expect the surgery to last? 2) can you stay overnight with your child in the hospital and if he goes to ICU, is there a lounge close by for you to spend the night if you're not allowed to stay in the ICU? 3) about how long will you be in the hospital and things like that. I wanted to know ahead of time where the bone for the fusion was coming from, because I knew he wasn't removing removing any ribs or taking the bone from her hip.

                        As for the amount of time needed for the catheter, it depends on the doctor. Most kids get rid of it in a few days, but they don't like to take it out too soon, because sometimes they need to reinsert it and they don't like to do that. Your son should be very careful in the beginning to obey his weight lifting restrictions. My daughter is four months post-op and still only allowed to lift no more than 5-10 pounds and that has been from the day of surgery. In other words, nothing heavier than a gallon of milk or less. As for the need for p.t. you can ask those kind of things at your first follow-up appt. after surgery. Start of list of questions for that appt. now whenever you think of them. My best advice for your hosptial stay would be to 1) keep track of the pain meds and 2) don't be afraid of speaking up for your child even if it means hurting someone's feelings or getting someone in trouble. Good luck.

                        Mary Lou

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                        • #42
                          list making

                          Thanks for the info and suggestions so far. I have started a list and I keep see-sawing between semi-panic about the surgery itself and the immediate recovery, and the long term impact. First I worry about the pain issue. Then it is the cost (I saw on another post...$27,000 for the rods?!?!?! We are not going Shriners, although it seems like an absolutely wonderful option) then it is Griff's activities and what he will be able to do and not. What about playing paintball? I think eliminating that is a good thing; he has only done it a couple of times, and it does not thrill me! But what about roller coaster rides-would the whipping around be bad? Any sggestions are oh so welcome.

                          I hope all your kids are doing well in recoveries, as well as prep for surgery. Nikki; I would love to hear about Crystal's prom! And Mary Lou, thanks so much. 4 months post op i know she has weight restrictions; what other restrictions?

                          many prayers and thank yous

                          Gigi

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                          • #43
                            Gigi,
                            The thing I heard you worrying about was an unexpected cost. Be sure to check with your insurance, get estimates and find out what they are going to pay and not going to pay. Then it won't be so much of a shock to you. We have incredible insurance, but because some of the stuff that is done, they consider some experimental and won't pay for the full amount they are supposed to pay. Rather than be surprised, we went to Shriners. I am very sure your son will get excellent care.

                            Let him keep being himself. I kind of agree on the paintball things. My nephew got me in the leg, I had shorts on, with one. They hurt. Whine, whine, whine.

                            I will let you know about Crystal's prom on Saturday. She looks absolutely stunning in her dress. It's fuchia (sp) with austrailian crystal's and she's a blonde. She didn't get the blonde hair from her dad or I. The best part is how beautiful her back looks now. She also has an appointment on Wednesday with her surgeon. Will let you know what he does on her restrictions. I know she is ready to do something more than just hang around. She'd like to be back out in the barn.

                            I don't know about roller coaster rides, but I know that bungee jumping is out of the question. I have heard that some carnival rides are a no no. But, I don't have to worry about that with Crystal. The Merry-Go-Round makes her sick.

                            My best suggestion is this. Fix your favorite beverage, get a good book, go into the bathroom and lock the door, don't let anyone in, not even hubby. Fill up the tub with hot water and your favorite bubble bath and take a good long soak and enjoy your favorite beverage and good book. It doesn't make it go away, but it helps relax you and helps you to focus for a short (and I mean short) time.

                            Love and prayers to you guys.

                            'til later,
                            Nikki

                            Comment


                            • #44
                              Hi everyone,

                              Sorry it's been a while. I had to go away on a business trip, and I was too swamped to visit the board.

                              Just a little update on my daughter. She went back to her surgeon last week for a check up. She was just about 4 weeks post-op. He said minimum 2 more weeks out of school, and he wants her to start PT 3 times a week for the next 6 weeks. I am researching PT's and will start her doing that shortly. She is going 5 hours between pain pills now, which is good. We are hoping to have her at every 6 hours by the end of the week. It is always tough for a couple of days when we scale back the dosage.

                              Gigi,

                              Don't be too worried about the expense. Ask your doctor to precertify the surgery, including the instrumentation if you have any worries there. That's what my doctor did, and the insurance company pre-approved the titanium instrumentation. Phew! One less thing to keep me awake at night!

                              Hugs to you all. Got to do my taxes!
                              Susanna
                              ~~~~~~
                              Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

                              Comment


                              • #45
                                Gigi,

                                Jamie is still very restricted, but please know that Jamie's case is a little different than most kids. Not only did Jamie have both Kyphosis and Scoliosis corrected, she has a very long fusion and the main reason for her restrictions is that they weren't able to use screws in Jamie's back. They had to use a lot of hooks, wire and clamps, so I guess her back is a little less secure, for a lack of a better word, than most. Her restrictions are no lifting more than 5-10 pounds (set of books at home and a book in each classroom); she isn't allowed to ride the bus; she must leave class after everyone else; no gym; no running, jumping, riding bike, no amusement park and all of this has been since the day of surgery. She is allowed to bend, but wasn't allowed to do that for the first two months.

                                Susanna,

                                I'm glad to hear your daughter is doing so well. Tell her to keep up the good work. As for researching p.t. don't take too long before starting p.t. We found got Jamie's prescription and didn't actually start therapy for about a week and a half. We found out that the prescription was good for six weeks from the day it was written, not from the date we started therapy, so therefore, we missed out on a week and a half of therapy.

                                Mary Lou
                                Last edited by ; 04-29-2005, 02:13 PM.

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