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  • PostOp

    Hello All!!
    Thank you everyone for thinking and praying for us on surgery day. My prayers and thoughts went to you all as well.
    I was so glad to hear everyone got to get their surgery complete as I know we all were worried something would get in the way.
    I thought of everyone here and wanted to let you all know how we were doing.
    Finally 6 days after surgery we drove the 2-3 hours back home.
    It is scarey bc I'm afraid of infection and we can't just run up to the Dr office to have him check things. She is better but the vicadin made her sick and now on Tylenol 3. Still taking it every 3-4 hours.
    The nightly torture of rolling and vital signs were as you all warned me. So many things posted here helped me prepare.
    The posterior surgery took 4 hours.
    Her hip graft has given her alot of pain but we are now getting in bed on the opposite side which helps alot.(I don't know why I didn't think of it sooner.)
    Now today is her worst day(and mine)bc her neck at the top is throbbing and says it feels like something is trying to poke out!
    I am watching bc I'm so scared of infection as the nurse told me to be careful of...
    Please keep me posted of all your progresses and advice. I know we have a long journey ahead but thank God we are post op.
    untill later, mamakay
    now 16 yr old daughter
    with worsen 65 degree upper curve
    surgery Nov 3, 04

  • #2
    I wanted to add a few things, as I've caught up on all the posts I've missed the last week,it reminded me .
    Ste had her morphine and catheter and dreessing and drain (scarey) pulled out all on the 3rd? day. It was alot bc she overwalked also.
    They gave her one unit of blood (my husband and I donated a total of 2) during the surgery and the next day she was so pale and blood count was low so they gave her the 2nd unit on the 2nd day.
    Did they take blood everyday the first 3and4 days from anyone? They did her.
    She had a rough start but did good on her walks.
    Also got her hair washed on 5th day which had to feel better, but wore her out. Brought pillows to the salon designated for patients! Don't miss this opportunity.
    Make sure you get a wheel chair and check the salon hours bc this was a great thing to have done there and not at home.
    It has been hard but I keep remembering and reading (Peggy) advice to see the positive side and know with each day it will be different and hopefully better.
    Yahoo!!mamkay
    now 16 yr old daughter
    with worsen 65 degree upper curve
    surgery Nov 3, 04

    Comment


    • #3
      postop

      mamakay
      i am so glad everything went okay. I was waiting to hear from you. Now the three of us are all home and all went well. I know how she feels with the pain. Nicole had blood taken from her everyday until the day we left. Nicole on the third day was very pale and they said she was anemic from the surgery and were going to give her blood, but they ended up not needing to. we will have to all go through the recovery together. I know it is going to be a very slow process. Nicole was on vicoden after the morphine, but it wasn't strong enough so they have her on percocet. Don't worry about infection she will be fine. Does she have steri strips that just fall off on their own? nicole's surgery took 4 hours also, which i thought was pretty quick. Well, we all made it that day. I cried for 4 hours i think until the surgeon came out. It was a rough day.
      write when you can and keep me updated on her progress
      jennifer

      Comment


      • #4
        Jennifer,
        So glad also to hear your day was much like mine.
        I thought the 4 hours was good too. Did Nichole have any ribs taken out or bone grafting at hip?
        I cried so much before the surgery and even cried the day we wheeled her down to get loaded in the car bc I was so thankful it was done and we were GOING HOME!!!!!!
        It was hard to sleep in her room with all the disturbances and knowing she was in pain. Also some nights my 19 year old stayed too so we were zoombies but rotated at the hotel where my husband stayed and one of us slept while the other was up.
        It only worked that way for a few nights since she had to come back to Austin to go to school and work.
        I hope you are right about her back healing ok. She is finally sleeping this eve.
        How long do you think they will give our girls the pain killers??
        I don't see my daughter getting close to even cutting the dose in half yet. Did Nichole learn how to swollow pills? That sounds like a good strong drug, your lucky her stomach can handle them.
        I was afraid the tylenol 3 would not be strong enough for Ste but seems like I have to give them to her frequently. I hope they're not bad for her liver like the motrin were said to be since she was taking so many of thembefore.
        Did they offer Nichole the liquid vicodin? I wish Ste could've handled the vicodin.
        Yes she has the steri strips and some have come off. I got some extra and have put some back on bc I don't want the incision to open too soon, also maybe it will help the scar to heal smaller.
        I think she is fused from T4 to L2 with metal,some hooks and more screws, how about Nic?
        Well it's great to hear from everyone here and yes I will continue to keep you posted.
        Bill's mom how are things??
        Take care,mamakay
        now 16 yr old daughter
        with worsen 65 degree upper curve
        surgery Nov 3, 04

        Comment


        • #5
          post op

          hi kay,
          Nicole is also fused T4-L2, so i guess they should have the same amount of flexibility. Nicole had ribs removed for her graft. Do you know what degree curve they got her down to? I don't know yet, i'll find out at out appointment. Nicole doesn't think she is feeling any better but last night she slept all night without a pain pill, so she has to be doing better. She still cannot get up and walk on her own yet. When i spoke to the hospital the other day they said to start trying to have her go longer on the pain med. I'm sure they will give you them as long as you need them. Nicole can not sleep in her own bed yet. She is more comfortable on the couch. Nicole never learned to swallow a pill, they had a pill crusher that makes it into a fine powder and they mix it and i bought one for home and she does it. Last i heard bill was doing very well. I think he was moving around more than nicole. I haven't heard again.
          write when you can. - hope you have a good day today
          jennifer

          Comment


          • #6
            Hi Kay and Jennifer,

            First off, welcome back Kay. We were wondering how things were going for you. So glad that you made it home.

            As for Bill - he is doing really well. He has not had any more bouts of depression and is pretty much off of his pain meds. (Yesterday he sat up for too long, so he took a pill last night, but that's the only pill he's had since Friday night.) I think the reason that his recovery may seem quicker is that he did not have any ribs removed and he had donor bone for his fusion. I think that makes a big difference in pain and in recovery time.

            We had our first post op appointment this morning. His curve is now 28 degrees which is a big improvement from 63, but - of course - I worry about what the future holds...

            For now though, all is well. The doctor said any time he feels up to it, he can go back to school. (That made him moan!) So I'm thinking maybe he'll start half days the week after Thanksgiving.

            Hope things just continue to improve for your girls.

            Susan

            Comment


            • #7
              post op

              hi susan,
              i'm so glad to hear bill is doing so good! You are very lucky. I wish i could say the same for nicole. She is okay if she is sitting on the coach or laying on the couch, but once i have to get her moving that's another story. She is still in alot of pain. She doesn't want to shower in fear of getting her back wet so we are having a tough time with her. She does not get up often and walk around saying that it hurts too much. I hope things get alittle better soon.
              Tell bill to keep up the great progress!
              jennifer
              I am wondering how kays daughter is doing i haven't heard from her since they got home.

              Comment


              • #8
                Hi Jennifer,

                Sounds like your daughter needs you to kick her in the tail a little, and get her out of bed and walking a little. She counts on you to take the hard road, and play the "toughie". From what you've said in previous posts, she needs you to take control, and let her know she will be better off if she gets moving. I like to let my kid take the lead, but your little one sounds like she's waiting for you to take the upper hand and get her moving. Sounds to me like she's working the guilt factor just a tad... Just my two cents, and by all means trust your gut.

                You've been right on target so far, but maybe you need to lead the bull by the horns and get her off that couch and moving a little. Did the doc recommend any PT?

                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!

                Comment


                • #9
                  Jennifer, I'm sorry to hear Nicole is still having a hard time. It is just as hard, if not more so, on the mom so I really feel for you. Its not easy seeing our kids struggle. Have you had an opportunity tell the hospital, when they call, what is going on and see what they suggest? Or perhaps, and this is just something that popped into my head, maybe she's a bit traumatized by the experience and would benefit from talking to someone to work though her feelings about it? Just a thought. Hang in there and email me if you need a shoulder. Carol

                  Comment


                  • #10
                    Hi jennifer

                    I think one of the hardest things after surgery is that you (I'm speaking from the patientee here) are scared. Your scared that you'll break something or damage something. Its strange in lots of ways, that you move differently, that you can't bend the right way. Its also hard to come out of the hospital having been in so much pain in the hospital and told to be "normal" and that things will go back to the way they were before.

                    A lot of things take time, and a lot of stuff sorted out in your head (so to speak), as time goes on you realise that you won't break something, that the pain is starting to go away, and that you don't need to be so "careful anymore"

                    A hard thing is also that no-one really "gets it" (I don't mean to sound harsh here), that unless the person has been through the surgery themselves they don't quite understand what its like. Then it gets more frustrating when they tell you "its ok, I understand"

                    Could you perhaps see through the hospital/the surgeon and see if she could be "teed" up with someone whose just had the surgery/a bit further along in recovery. Even if its just for a chat/swapping stories. I know that some hospitals organise it that former patients(if they want), talk to new patients about what its like, how you feel etc.

                    One of the things my Mum did was get me out of the house on a little "excursion" each day. It was for nothing major, sometimes a trip to my friends house, and often a walk down the street to buy a roll and an Ice-cream for lunch. It encouraged me to be up and about, because if I wanted it, I had to go and get it. It also helped keep my sanity in check and get "out in the fresh air.

                    With the shower thingy, could you perhaps replace the shower head with a hand held one. And for the moment have her sit down in the shower on a seat (if she isn't already). You can make the flow on the heads pretty low, and it means that Nicole has complete control over the shower, and how much gets wet.

                    I wish you the best of luck, you will get there

                    Alison

                    Comment


                    • #11
                      post op

                      hi susanna,
                      i read your post to my husband and he thinks you are right on target. Nicole i think does need a push. When she has to get up and makes a whole production out of it i sit there and wait until she's ready, which she drags the whole thing out. Then when she takes too long i call my husband to help and he makes her do it right away and she does it. So i think she is the type of kid who needs to be pushed.
                      thanks for all your great advise. I'll keep you updated on her progress.
                      jennifer

                      Comment


                      • #12
                        post op

                        thanks carol and alison for writing me. Everyones support and suggestions are so helpful. Alison, my shower does have the hose that you can take off and i do have a seat, but she is just so scared for water to go on her back at all. I gave her a shower with the hose and we just washed the front of her body but she made me be so careful not to get her back wet.
                        I am hoping today is a little better. Yesterday was a pretty good day and hopefully today will be too. I just have to get her up and around more.
                        i'll keep you all updated on her progress.
                        jennifer

                        Comment


                        • #13
                          Hi Jennifer,

                          You've had great advice from everyone else. I hope Nicole will soon be an easier patient - easier on you. It is so hard when they are miserable. You are doing great. Keep up the good work.

                          One thing about the shower... are her incisions covered with steri-strips? If so, its been long enough that some water should be fine (remember to ask the surgeon first, but still). As long as she isn't soaking in a bath or tub of water, she should be fine. The steri-strips will protect the incision from the little bit of water that would get on her. I'm sure her back is getting itchy, maybe. A little water to rinse off sounds like a good idea to me. Braydon is allowed to take a shower 5 days after surgery, as long as the water doesn't run on his back continuously. After 8 back surgeries, he's never had an infection. Maybe a good shower would help her spirits? I hope so.

                          Good luck and know we've been sending our best your way.
                          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


                          • #14
                            post op

                            hi carmell,
                            today was a pretty good day and nicole finally invited her friends over. They have been calling her everyday to come over and see her and everyday she says okay and then changes her mind later on and tells them maybe tomorrow. So finally she had them over and she seems to be having a good time with them. I hope it lifts her spirts and motivates her to get moving a little more. She still is not moving around alot and yes she has steri strips on her incision but still won't take a shower It will be a major milestone when she does. I will be so excited.
                            anyway thanks for writing it helps
                            jennifer

                            Comment


                            • #15
                              Hi Jennifer,

                              Sounds like you guys are turning the corner! It's amazing how quickly things change at the two week mark after major surgery. I am so glad Nicole felt up to a visit from her friends.

                              I think Alison was right on target recommending you guys pick something Nicole really wants to do outside the house. Maybe a shopping excursion or a special treat like ice cream or Starbucks will help. Anything to get her up and walking and out of the house! Fresh air and sunshine, no matter how trite that sounds, are such a healing influence. Remember, after childbirth, how much better you felt after a walk?

                              We finally settled on our “final five” last week, and made all our initial appointments. The list is Boachie (HSS), Neuwirth (Beth Israel), Lauerman (Georgetown), Roye (New York Presbyterian) and Moskovich (NYU). Our first appointment is Neuwirth on Friday! Wish us luck. Maybe one day when Nicole is feeling better we can meet for lunch in the city…

                              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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