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  • #16
    Hi Linda,

    Just wanted to agree with Nikki about a few things...

    1. Pain management is the key. Talk to the Pain Services people BEFORE the surgery. You and Tara need to know what to expect, so you can keep the nurses/staff on the right schedule. If Tara is worried about being in pain after, have her (or you) ask the Pain Services people what they can do for that. Many hospitals allow PCA (Patient Controlled Analgesic) pumps. This allows HER to push a button and administer pain medication on an as needed basis. They are great for the first days after surgery. Like Nikki said, they CAN do something if she were to have breakthrough pain. Try not to let the pain get that far. It is MUCH better to stay on top of the pain med schedule than to let her get too uncomfortable. Her body needs to rest to recover well.

    2. Visitors - if she doesn't want visitors, don't have them. She probably won't remember if they come the first day or two, but, it is still her wish. Respect that.

    3. Moods - if she gets angry and yells at you, don't take it personally. She is scared and hurting, and you are the convenient one to take it out on. YOU need to be rested for the recovery time too. I'm sure she will lean on you more than she or you realize those first weeks.

    4. Post-op recovery - If Tara has anterior and posterior surgery, she will likely have a chest tube (or two) draining the fluid from around her lungs. This adds another level of nursing care. Most posterior-only patients don't need chest tube drains. Most patients who have surgery that lasts 6+ hours will be puffy from laying on their stomachs for many hours. The swelling should go down. They will also watch her hemoglobin levels to make sure she isn't anemic or has any other blood problems. Braydon needed a blood transfusion 48 hours after his rod placement surgery. Within a few hours of the transfusion, he was a completely different child, and very well on his way to a smooth recovery. Before then, very different story. Don't be alarmed by her "look" post-op. It is very temporary. Also, don't be afraid to ask what things are for. The staff should let you know everything about what they are doing.

    I hope Tara does well, emotionally. We met a mom who's 21 yr old daughter just had scoliosis surgery at our children's hospital. Her daughter was not happy about being there, and fought them the entire recovery time in-patient. Her emotional state will determine some of how well and how quickly she recovers. What makes her happy? What kind of relaxation things does she like? What music does she like to listen to? Bring things to the hospital that will be for HER. The more comfortable she feels, the better her recovery should be.

    Good luck and we look forward to hearing updates.
    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/

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    • #17
      Hi Linda
      I think a bit of fever after surgery is pretty normal - Genevieve has always tended to run one for a day or two anyway after surgery (she's had several ops over the years although this is way the scariest).
      Tubes and monitors and such are a shock when you first see them but it's amazing how quickly you get used to them. You watch your child so closely when they start disconnecting monitors - they get to be quite comforting.
      Still no date for us - I'm going to phone up tomorrow. We've actually had lots of time to stress as we did get a letter at the end of January saying Genevieve would be admitted in 6 to 10 weeks with pre-op 2 - 4 weeks before that. My stress levels have been rising ever since.
      They tell us they only need a day for the pre-ops. It's not normal practice in the UK to donate your own blood for ops so we don't need to put her through that at least.

      Can't really say anything about the modesty issue - Genevieve is entirely dependent for her personal care etc anyway so it's just never been an issue for us.

      Good luck.
      Lorrie

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      • #18
        Thanks for all the info. It is so helpful and I'm taking notes in my "surgery book" on everything you guys tell me. When I saw someone mention a journal I decided to start one right away.
        Lorrie, I can understand your stress if you have to be ready in a day's notice. I would be calling as well.
        Carmell, Tara is having posterior surgery fusing T6-L3. So hopefully she'll have fewer tubes then. So if Braydon needed a transfusion 2 days later, did he have a tube in his incision site and is that where he lost blood? How was it that he was different before the blood transfusion?
        Emotionally, Tara will do great. She's been in a lot of pain the last 3 years. Especially this past year. So she is definitely ready for this. She's just so layed back about it all that I feel I have to remind her it's major surgery and will be a difficult haul. I think where she is nervous is not being in control of herself post op. She thinks she is going to be taking summer classes 3 weeks post op and be back on the soccer field Aug. 15. I hate to have a negative attitude, but everything I have read here tells me that is a long shot. Her physical therapist at the pre op appointment I think prepared her a little more for the idea that maybe she should reset her goals just a little. Better from him than from me.
        Nikki, I think it is awesome that Crystal is so excited about her prom dress. I remember shopping for those perfect dresses and I'm the only one who Tara would trust to shop with her because I would make her turn around first thing to see how her back looked in it. Most moms were checking out the cleavage! I was checking out the back! There were so many dresses we had to turn down. I always loved the one's that laced up the back and she just couldn't get away with it. I hope Crystal has a wonderful time!
        So, how soon does the puffiness go away and how high does the temperature get?
        About the pain management. Who is this pain management team? Is it different than the nurses? Who do I discuss the post op med protocol with in advance?
        Also, they told Tara to take an iron supplement. She is taking a vitamin with iron which is giving her 100% of the RDA. Does she need more than 100%? As it is, it is giving her some constipation problems and this is another concern of mine when she is recovering as well. If she is already having problems, what can she expect when her intestines start working again?
        Thanks for all of your insight.
        Linda
        Last edited by Tiny; 04-06-2005, 07:18 PM.

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        • #19
          Linda,
          I just hope all of our comments are helpful to you.

          I hate to upset Tara, but soccer will be absolutely out of the question for at least 9 months, and most likely 12 months. Crystal had to plan her surgery around her basketball season.

          Swelling. Crystal's swelling went down in a couple of days. She looked pretty normal by day two-three after surgery.

          Temperature. Generall speaking, it's low grade. Nothing to be alarmed about and very normal after surgery.

          Pain Management Team. Can be a special group of people that all they do is pain management and nothing else. Or it can be the Registered Nurses. It depends on each individual hospital.

          These are all very good things to ask during your pre-op appointments.

          As far as the iron goes, call your doctors office and talk to his nurse. She should have a good answer for you. Crystal didn't have to donate blood and didn't require any iron before surgery.

          If Tara is having only posterior surgery, she shouldn't have to many tubes hooked up to her.

          The hospital will want her digestion system up and working before they let her go home. They will monitor it closely.


          Isn't it interesting that when you have other things your daughter worries about, cleveage is no big deal. Backs on dresses have always been an issue for Crystal. Now she is so excited to not worry about it. I can't wait to you guys are there. It is a great reward.

          Love and prayers.

          'til later,
          Nikki

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          • #20
            Nikki, since Crystal is starting school again keep me posted on how that goes. Tara needs to take a 4 hour Chemistry class this summer which would start 3 weeks post op. It's a 4 night a week class for 6 weeks. I'm just not so sure she'll be ready for that, so it will be helpful to follow your experience.
            Also, do they start an oral antibiotic before surgery, or just add one to the IV? Is there swelling in the spine area? Thanks
            Linda

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            • #21
              Linda,
              There were antibiotics put in Crystal's IV, but I don't remember if they started it right before surgery or after surgery. Some of that real immediate stuff is a blurr to me. But, I do know it was started right away.

              There was swelling in the tissue around Crystal's spine area caused from the incision, but it went down in a few days.

              I really don't think Tara will be able to handle a 4 hour class 4 nights a week at three weeks post op. Some of these decisions she will come to on her own. Right now she is at that invincible stage and nothing is going to slow her down. Don't worry to much about it though. It will solve itself. She will probably be upset about it too. Crystal goes stir crazy. She spent about two hours yesterday getting up and down and pacing around the house.

              Crystal decided yesterday that Monday was a huge day for her. It absolutely took all her energy and she has been trying to recoup the past couple of days. So, she isn't planning on going back until next Monday. I told her a day at a time was fine.

              Hope I answered your questions. If you have more, just ask, ask, ask.

              'til later,
              Nikki

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              • #22
                Hi Linda,

                Braydon needed a "boost" transfusion 48 hours post-op because his blood count numbers just weren't bouncing back to normal. The actual blood loss during surgery was minimal (they didn't tell me exactly how much, but it wasn't enough to warrant an immediate transfusion). During the first 48 hours, he was still intubated and sedated. When they tried to prepare him for extubation, he was lethargic and didn't look good (coloring, eyes, etc.). When they did the blood work and saw that his blood counts weren't quite what they needed to be, they transfused him. Within a couple of hours, he was fully extubated, sitting in bed and hungry.

                Having a low-grade temperature is normal because the body is in such a massive recovery mode. So much of the body has been disrupted and a temperature is a defense mechanism. If the temperature stays high for a few days, not good. That usually means there may be infection somewhere. Braydon would spike a fever when his pain would go out of control. Once the pain was controlled, the fever would go away. Everyone is a little different.

                The puffiness depends on how well they begin recovering. Most the time, within 24 hours most of the puffiness is gone because they are no longer face-down.

                At our children's hospital, there is a Pain Services Department. It is made up of anesthesiologists and nurse practitioners who's only job is to control pain for the patients in the hospital. I'm sure most hospitals have some type of pain services group. Call and ask. It is very important, I promise! These would be the people in charge of the pain management plan that the nurses would be enforcing. Talk to them (the Pain Services people). Have them make sure there will be someone in their dept on-call in case you need to have them check on her at a time when they don't normally check on patients. This would be for YOUR peace of mind. You need to know what to expect so you can make sure Tara gets the best care possible. Those first few days post-op can determine how well her recovery will be.

                You mentioned Tara is taking a vitamin with an iron supplement, and its causing constipation problems. Honestly, the worst post-op problem she'll have will probably be her constipation and getting her bowels moving again. This is Braydon's biggest problem, always. In addition to the pain meds, make sure they order/schedule a stool softener for her to start taking as soon as she's able to keep liquids down. Constipation and bowel issues are a huge problem if you don't stay on top of it from the beginning. Braydon also requires a laxative because of his slow motility normally. This is something to talk to the docs about. Talk to the docs who will be ordering the medication for her post-op recovery.

                The antibiotics are usually given every 8 hours during post-op recovery, via an IV. She probably won't take any before the surgery, unless she has a medical condition that requires prophylactic antibiotics.

                Good questions! I hope you are doing well and that everything will go smoothly.
                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/

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                • #23
                  Hi Lorrie
                  I am new to this forum and noticed that you are also from the north east of England are you under Mike Gibson at the Freeman?? My daughter is scheduled for surgery (posterior fusion) in July......she will be pre donating blood 3 to 4 weeks before her op
                  I tried to send you a private message but was unable to.
                  Hope to keep in touch with you via this forum
                  Olwynx

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                  • #24
                    Linda,

                    I'll try to address some of your questions, but if I miss some, please ask again. Jamie was swollen when I first saw her, and the nurses in the recovery room said the swelling had already gone down by about 50% before I saw her. I didn't mind the swelling, but it was a major shock to my mom and I had warned her that she would be swollen. I could literally sit and watch the swelling go down. Tubes and things--there were two things that surprised me and forgive me, but I never remember the proper names for them. There was an I.V. type thing (they used this to administer meds and also to draw blood) in her neck and also a tube down her nose going into her stomach to drain stomach acids. I know not everyone has the tube done their noses, so I really wasn't prepared for that one. She also have a regular I.V., catheter, drain tube and she had an ice pack on her groin area for something they needed to use during surgery. They tried once to start an I.V. before surgery and we were told they would start it once she was asleep. Jamie later told me they started it before she was asleep, but they asked her first if she minded if they tried again. Jamie had an antibiotic started in the O.R. and received them through her I.V. for about two days after surgery.

                    Mary Lou

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                    • #25
                      Marylou, wow, she had a lot she was hooked up to. Did she mind, or was she too out of it to realize it? I jotted all of it down, so I can ask to see what may be the possible tubes she'll have. I'd rather be totally prepared. I don't want to lose it the first time I see her. Was she awake when you first saw her in recovery and how soon was that after surgery?
                      Carmell, thanks for the explanation on the transfusion. I didn't know how they were able to determine if one was needed, but it's actually from a blood draw. Do they take blood a lot when they are in there? Tara has been taking 2-3 stool softeners a day and probably 1 or 2 laxatives a week since she started the vitamin with iron, which has been a couple of months. So I'm sure it will be an issue when she's in the hospital. I'll defiinitely make a note to discuss that.
                      Nikki thanks for the input about the class. I had a feeling it would be pushing things. I'll let her know and see what else she can work out. Other than the energy it takes physically to go and sit through class, would you think she would be in a mental state of mind to study...for example an online class or a TV class, or will she still be taking too much medication?
                      OK. Lots of great information here. Thanks tons. It helps tremendously.
                      Did your kids lose weight during this whole process and have they put it back on? Did they get an appetite in the hospital or once they got home, or does the medicine they are taking mess with their stomachs too much?
                      Thanks.
                      Linda

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                      • #26
                        Me again! (Hope you aren't bothered by my ramblings)

                        Another thing you may want to ask about before the surgery is if they will be able to inject LOTS of numbing agent into the incision directly. This helps reduce the post-op incisional pain. This may also be a factor in how "awake" she may appear when you get to see her. Since she's having posterior-only surgery, she probably won't be on a breathing tube, and she shouldn't have a chesttube drain. Both are good things, since they can be kind of overwhelming in the beginning. Tara herself will probably not be aware of the first couple of days. They usually do a good job to keep them pretty medicated. She won't be aware of her appearance at all unless someone gives her a mirror.

                        Again, since she's having posterior only surgery, they probably won't test her blood quite as often as they would if she were to have anterior surgery. Its just a bigger deal all the way around. Ask them. Find out how much they monitor the blood during the first day or two post-op. With Braydon's expansion surgeries, they don't draw blood at all. Its an individual thing, I'm sure.

                        Braydon is prone to being very nauseaus after surgery, so we've learned to give him lots of anti-nausea meds. This actually helps his appetite. As soon as he's alert enough to recognize he's hungry, he'll usually eat quite a bit of something, then go another 24 hours or so without eating anything. This can be complicated by the constipation too. Just keep an eye on things, and don't worry about pushing her to eat. Drinking is more important than eating.

                        She may or may not lose weight. That's a very individual thing too. This is a HUGE surgery. Her physical body will be easily exhausted with any amount of effort or exercise (even walking up stairs or down the block). Her appetite will depend on how well she feels. It may not hurt to have some supplements on hand for her if she doesn't want to eat. Boost drinks (or the like) are great to give them calories without much effort in chewing or eating. Just a suggestion.

                        The pain meds she will go home with will also complicate the constipation. Most narcotics slow down the GI system and cause havoc with their bowels. Keep that in mind if she complains about having a stomachache, but is taking her pain meds. Constipation can be a problem for a long time if you don't stay on top of it (I know, a repeat of what I've already said).

                        Another thing I didn't mention before, and I didn't notice anyone else say, is that some patients have issues with muscle spasms. The incision is cutting into MAJOR back muscles. Braydon needed to take Valium (muscle relaxant) for a couple of days post-op to keep the spasms to a minimum. You know its a muscle spasms when the pain is a sudden, sharp pain in a general area of the back. Some docs don't think muscle spasms are important enough to give medication for, but, its something to ask about.

                        All done now
                        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/

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                        • #27
                          Move over Carmell, it's my turn to ramble again! lol

                          Linda, Jamie didn't mind all of the stuff she had coming out of her right after surgery except the tube going down her nose and that was mostly the way they had it taped. Oh, I forgot to mention the heart monitor, but that isn't a scary thing and they usually have a clip type thing on their finger to monitor their oxygen (?), but those are the easy things. Jamie spent one night in the Intermediate Care (no need for ICU, yeah!) and the heart monitor and tube in her nose were removed the morning after surgery before going to a regular room.

                          Some say it takes days for the stomach to wake up after surgery and start making noise. Jamie's was making noise the night of surgery, but she still wasn't allowed to eat for several days, which from what I understand is a good idea. You don't want to push them into eating too soon, or they will just get sick.

                          Yes, she lost a few pounds, but only maybe 3-5 pounds so it wasn't too bad. I'm not sure if she's gained it back or not, but she doesn't and never did look sickly from the weight loss. Like Carmell said, the stools can be a real problem after surgery. They continue on the iron pills, plus they get pain meds which don't usually help the situation. Because Jamie's bowels hadn't moved we had to stay in the hospital an extra day until they did start working.

                          Was Jamie alert in the recovery room? Ha-here's the first thing she said to me in the recovery room-"your hairs a mess". Yes, she was awake enough to comment on my hair and after waiting so long, I really didn't care what my hair looked like, but as a teenager, I guess it mattered to her. I did mention to her as to whether or not she's seen her own hair lately and she said she didn't care about that 'cause she couldn't see it! Our conversations were brief. She slept off and on most of the time in recovery.

                          How soon after surgery did I see her? If I rememeber correctly, she was going to recovery around 5 p.m. and I saw her around 6 p.m. and we were headed to her room by about 7 p.m.

                          Mary Lou

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                          • #28
                            Linda,
                            As we all try to tell you our stories, try to keep in mind that each of our children, on all of these forums, had difference proceedures, some even have other health problems. No two surgeries are alike. Crystal was in recovery for about 30 minutes before they let us in to see her. She never went to ICU. They took her directly to her room, which is SOP at Shriners. Crystal had an IV in each hand, heart/oxygen monitor attached to her finger and a cathater when we saw her in recovery, and an oxygen mask laid next to her face for a little extra oxygen. The swelling Crystal had was not a shock to my husband and I, she still looked like our daughter, blonde hair and all. So, as you can see we all saw different things when our children came out of surgery. Antibiotics are routine proceedure with these surgeries. Crystal lost a few pounds, but by no means is a skinny girl. She is very fit and athletic. She's 5'7 1/4" and weighs about 130 lbs and is all muscle.

                            As far as taking blood, I don't know. They didn't take any from Crystal when we were in the holding room and they didn't take any after surgery. She didn't require any blood transfusions at all. They use a machine to clean the blood cells and return them to the patients body. Not sure exactly what it is or how it happens, but that is what they did with Crystal. As far as the bone graft for her back goes. They used bone from the bone bank instead of taking it from her hip or rib. Which is one reason she is recovering so quickly. She isn't recovering from two surgeries at once.

                            Crystal had posterior surgery only.

                            Crystal didn't eat for beans in the hospital. Partly, her stomach was upset from so much medication. The other reason is that she didn't like a lot of her choices. By the time they allowed her to eat real food, it was the weekend, and I think they served leftovers. I wouldn't of eaten them either. I finally asked her what she wanted to eat for dinner the last night. She said "PIZZA". So we ordered pizza, a bunch of us on the ward, and had a going home party that night. That was the real first thing she ate, other than two sandwiches a couple of days earlier.

                            As far as her classes go, she may be able to handle an internet class. The problem with a televised class is that she may not be feeling up to it right at the moment it is on. With an internet class, she could work on it until she couldn't deal with it and then rest for a while, then go back to it later. Crystal takes her medication around her study schedule and seems to be doing well. She actually sat at the computer today for 5 hours and worked on her science presentation that is due next week, and it is almost finished. I sure wish we had Power Point when I was in high school.

                            My big concern is that we are feeding you so much information that I am worried you will get wigged out (just a term we use at home). Keep in mind everyone's surgeries and experiences are different.

                            One girl made a statment that goes something like this - We survive this surgery, we come out whole and in a lot better condition than we went in. I thought that was a good one to pass on.

                            Love and prayers to you all as you go through this time of your life.

                            'til later,
                            Nikki

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                            • #29
                              Great comments, Nikki. Each and every person who has scoliosis is unique, and requires unqiue and individualized care. Always remember that. What works for one may not be the right thing for another.

                              And yes, we've gone into lots of detail. Hopefully its being received with the intention it was sent - to serve as a an example of a few experiences. If you are like me, I'd rather know too much than be surprised by something I wasn't expecting. The fear-of-the-unknown is always harder for me to handle. I hope I haven't made anyone more stressed or worried - that wasn't my intention.

                              I wish Crystal would have had a good food option. Our hospital has "room service" for the patients. Anytime between 7am and 7pm they can order from the menu. Not bad at all. It's one of Braydon's favorite parts about being in the hospital (even tho he usually doesn't eat much). The pizza party sounds like a great idea! Good job. Good luck to Crystal with her science fair project. I hope she gets an excellent grade on it.
                              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/

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                              • #30
                                Hey, I love the ramblings! Keep them coming. I'm taking every little bit in. By reading through the other threads as well as this one, it seems that the one most important thing is the medication afterward. So as I understand, when and if she is on the morpine pump, she will most likely be in controlled pain, but it is when she goes to orals that I have to really keep on the nurses?
                                The bone they use for the fusion: Tara's Dr. said they will probably use from the bone bank so she won't have another scar, but I later read that it sometimes doesn't allow for as good of a fusion. Nikki I know you said they used the bone bank for Crystal. What led you and your Dr. to that decision, and any other experiences or thoughts on that?
                                Thanks,
                                Linda

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