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Thread: new mom preparing for surgery

  1. #1
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    new mom preparing for surgery

    I'm logging in on my daughter's post. She posted a few times when she first found out she was to have surgery, but got busy in school and so I'm taking over because you mom's have been a wonderful source of information and inspiration as well as your daughter's and son's. So Thanks for all of your insight, and congratulations to those of you on the recovery side and good luck to those of you preparing for surgery and continued prayers for all of you.

    Tara(Tiny) had her first set of pre op tests on Friday and the reality sure set in for me. Tara is so layed back and takes it all in stride and doesn't really care to talk it to death, and I on the other hand think about it practically every hour of the day. Nobody in the family gets this, so Thanks to all in the forum in advance for the questions and venting that may follow in the next several weeks. Her surgery is May 16. Thanks again and good wishes.

    Linda

  2. #2
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    I know what you mean about thinking and talking about it as a mom. My daughter doesn't want to talk it to death, and I have to be quiet around her. She seems to think if she doesn't talk about it, it is easier to handle it. Since we have 2 months yet until her surgery, and I don't want her to chicken out, I don't talk to her much about it. That is good that your daughter, Tara, is eager to share on the net. Maybe mine will get there as surgery gets closer. Take care, Kris

  3. #3
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    Linda & Kris,
    I think all of these kids avoid talking about their surgeries. It doesn't seem to make a difference if they are boy or girls. They just don't want to discuss it. Crystal had surgery 3/15/05, and she finally talked about it at her pre-op appointment the day before her surgery. The doctors and nurses were great with her. They talked directly to her and not to my husband and I.

    Linda where is your daughter having surgery?

    You will find that as you get closer to your daughters dates, you will get more keyed up. That is perfectly normal. Everyone of us mom's has been there on that. You'll feel like your having to pull yourself up by your bootstraps, at least I felt that way. I got to where I was only sleeping a couple of hours at a time. I finally slept well the final three nights before surgery. I cried when they took my baby from me into the surgery suite and cried when they returned her to me in recovery room. There are a lot of emotions that absolutely run wild and you can't control them. Then, after surgery you take this huge deep breath and are so relieved to have your baby back.

    If you have any questions about anything, please ask, ask, ask. There are some incredibly wonderful mom's here. And, all of them know how you feel at the moment and know how you will feel when surgery is over.

    Our prayers are for all of you entering this scary time with your child.

    'til later,
    Nikki

  4. #4
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    Sending best wishes to Linda and Tara - we'll be thinking of you on May 16. Surgery will be here before you know it. Let us know if you have any specific questions.
    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/

  5. #5
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    Quote Originally Posted by Tiny
    I on the other hand think about it practically every hour of the day.
    My daughter's surgery is scheduled for 2nd May. It's slowly becoming basically all I think about. I get up and go to work and run the house and so on, but I'm absolutely just faking it. Underneath all that calm, grown-up behaviour is a hysterical screaming person going NOOOOOOOO!!!!!!!!

    Realised I wasn't actually faking it all that effectively when, in staff meeting last week, I practically took somebody's head off for behaving in just their normal annoying way. Been putting up with it for years, but at this point, I could have gladly turned the hose on them.

    I think this is all actually pretty normal. Mums are biologically designed to be vigilant about danger to their children, and that's all we're doing. If we had to rescue them from a burning building, this focused hyped-up state would be just right. Since what we really have to do is sit in the waiting room, it's not so adaptive.

    But you're for sure not going crazy, or anything. Or if you are, so is every Mum on this forum as the surgery date gets this close.

    Hang in there.
    Patricia
    Scoli Mum from New Zealand
    Daughter Caitlin's surgery 2nd May 2005
    Posterior fusion T3 - L1

  6. #6
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    Thanks all

    for your comments and thoughts.
    Patricia, it is mind consuming and comes through as irritability for me too. Especially the day of the pre op stuff and there wasn't really anything intimidating at all. I guess you just want to know how your child is going to handle it all and that's why I cling to the success stories here. Your daughter's surgery is coming up soon. I'll be thinking about you guys.

    Nikki, Tara is having surgery at Children's Mercy in Kansas City. She'll be the big kid on the block. She's hoping for a private room. Does anyone know if that can be requested?

    Linda

  7. #7
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    Hi Linda
    We're waiting for surgery too so I really understand what you mean when you say it's all you think about. Even when I think I'm concentrating on something else there's a bit of my brain going round and round and round it and I'm not really being a rational person at the moment. We still haven't got a definite date - last we were told was mid-April - and it's making me crazy not to be able to get anything organized. My husband teaches and it's not so easy for him to just take time off work. If we don't hear anything in the next day or two I think I'll have to phone up and hassle them some more - otherwise mum is going to be in the locked ward!
    Best wishes
    Lorrie

  8. #8
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    Linda,
    I know at Shriners Hospital's they try to put their spine patients in private rooms. That is because they have to come in with them to turn them from side to side so often and don't want to be distrubing others. However, if they get a lot of patients in, you do stand the risk of losing your private room. Crystals only had one bed, but had room for a second one if needed. Crystal got a private room with a view, believe it or not. It was so funny because as we were on the elevator, going up to the ward, she said it would be neat to have a private room with a view. I don't know if private rooms are something other hospitals do for spine patients.

    You could call the hospital and ask, but there is also a possibility that your insurance won't pay the full rate for a private room and spine kids are in the hospital 5-7 days. That could end up being a big chunk of money you have to pay. Check with the hospital and the insurance and then decide if you want to pay the difference.

    Our prayers are with you as you get closer to your dates.

    'til later,
    Nikki

  9. #9
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    Lorrie, that would drive me crazy too, since that could be just a couple of weeks off. The brighter side is you won't have as much time to stress over it. Wouldn't they have to give you at least 3 weeks to get the pre op work done and the blood donated? I hope you find out soon.
    Nikki, thanks for the info. I will call the hospital and the insurance company and look into that.
    How do your kids handle losing their modesty in the hospital? Are they just too out of it to care? And what about medications that they are on. How do they take daily meds if they can't eat or drink?
    Linda

  10. #10
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    Linda,
    The nurses, whether they are male of female, are very good a helping the kids with their modesty. They are very respectful of their privacy. Crystal had a male nurse several times, and he actually became one of her favorites because he really respected her 16 year old privacy.

    Crystal has her asthma meds that she has to take daily, orally. They do let them have them. Crystal even took hers the morning right before her surgery. But, be sure you let the doctors, nurses, especially the anthesiologist (Sp) and anyone else that your child has daily medications they have to take. They do make provisions for those medications. We took Crystal's with us, and they put them in with her meds behind locked doors. That was for our protection and theirs. They were very good about giving them to her every day. We only had the one nurse that was a problem. She said there was no doctor orders for them. I told her otherwise because Crystal has to have those medication to just get along in a day. One of the other nurses told her that if the parent brought them in and they were prescription that yes they were to be given.

    Let me know what you found out about your daughters room.

    'til later,
    Nikki

  11. #11
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    Linda,

    Our children's hospital has all private rooms, except for the infant unit. They have two beds to a room. It is SO NICE to have a private room to recover in. This is a HUGE surgery. It's nice to be able to be in peace, as much as possible.

    Even tho Tara is "older" I would call the hospital and talk with the Child Life Dept. Has Tara ever had other surgeries recently? She may want a tour of the hospital so she is somewhat familiar with what to expect. The Child Life people are great to help ease the stress and worry about surgery.

    Good luck and keep us posted.
    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/

  12. #12
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    Hi Carmell. Tara hasn't had any surgeries, and she expressed some concerns about her being a little older to the Physical Therapist when we were there for her pre op work. He was really good about setting her mind at ease. I think it might be a good idea to schedule a tour with our next appointments.
    Linda

  13. #13
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    Linda,
    You have mentioned how old Tara is.

    Yes, I would most definitely schedule a tour at your next appointment. This might set Tara at ease. Did you call your hospital and insurance and find out about a private room. Like I mentioned, sometimes spine patients automatically get a private room.

    Let us know if you have any questions.

    'til later,
    Nikki

  14. #14
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    Nikki, Tara is 20. It really puts her at the upper end of being able to treat her in a Children's hospital, but we've been with this Dr. for a long time and she trusts him and we were happy he would still do it. I did finally hear back on the room and they are set up as private rooms. So I'm happy for that. She has already said she doesn't want visitors until she is home. And she made me promise not to take pictures, which will be really hard for me, but I will respect her wishes. I tried to get her to let me get a couple of back shots the other day and she wouldn't let me. She is very aware that her back looks bad and has worked hard on her posture to make it appear as good as possible.

    I do have a couple of questions. Someone mentioned one day about their daughter having a fever. Is that a common thing, and what causes that?
    Also, I haven't really heard anyone mention that they were alarmed at how swollen, puffy, and attached to tubes they were when seeing their child for the first time. Is it not all that bad, or are you just prepared?
    Linda

  15. #15
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    Linda,
    Tell Tara our prayers are with her. She has every right to be uptight about this surgery. Any surgery is scary. And, this is a big surgery. I am so glad Children's Hospital is still going to treat her. That is wonderful. She will get wonderful care there.

    Crystal had a few visitors in the hospital, but she kind of slept right through them. Since we were five hours from home, it was friends that she had in the Portland area and direct family members. We still kind of keep the number of visitors limited at home. She still gets tired quickly. She is almost off of pain medication, other than regular tylenol. I think I am going to have to get one more refill on codeine and then that will be it.

    Crystal ran a fever soon after surgery, but they quickly get on to that. I think it is pretty normal. I was almost in a panic about it and the nurses reassured me that was normal after such a big surgery. It is just the body trying to fight everything off. They gave her tylenol for the fever.

    Crystal wasn't hooked up to a lot of tubes when she came out of surgery. She had an IV in each hand, an oxygen mask, and a heart monitor. She was swollen, but still very recognizable. The reason they are swollen after surgery is that they are placed face down on the surgery table and all the fluids in their body go to the lowest points, unfortunately is their face. Crystal has a posterior fusion only. I understand that anterior fusions are more involved and the kids have more tubes and stuff coming out of them. Crystal didn't even require a drain in her incision.

    Pain Management. Don't tolerate any nurse telling you they can't do anything for pain until Tara's time is up for her next round of pain meds. They can and should do everything in their power to keep Tara from having too much pain. She won't be 100% pain free, but they can keep it tolerable. If the medications make her sick they can give her phenigrin for that. If you don't like what a nurse tells you be sure the let another nurse know or the doctor. We only had one problem and I got in the middle of the nurse and it never happened again. The next nurse coming on shift asked what happened and I told her. She actually told me the other nurse was out of line and to let the doctor know if it happens again.

    I guess I went in expecting the very worst and saw, what I would call, the best. My daughter still looked like my daughter, even with a swollen face. When you go into recovery to see her before they transfer her to her room, if you have questions ask. The recovery nurses are very good at explaining what things are for.

    I am so glad Tara has a private room. That will make things so much easier. She won't have to worry about staying composed. Don't be alarmed if she lashes out at you. Two things are causing that: 1) the pain and 2) the drugs. I still hate it when Crystal has to take a codiene during the day. She can get pretty wicked on that one. She tries to only take it at bedtime, then the wickedness is gone by morning.

    Crystal, at 16, can really understand how Tara, at 20, feels about her back. She has always worked hard to stand up straight. Her back hurt her all the time. No matter how hard she tried to stand up straight her back was still crooked. She is so proud of her back now. She has her prom in two weeks and is wearing an open back dress that laces part way up. I asked her if she wanted to hide her scar. She said "Nope, I am not ashamed of my back anymore." Please pass this one on the Tara. It may help her along.

    Crystal has wanted this surgery since she was very young, 8 or 9. So having this surgery was a dream come true for her. She not only stands up straight now, but she is 2 and 1/4 inches taller now and feels great about herself.

    Well, now that I have written a book for you to read, I better get on with my day.

    Love and prayers to you.

    'til later,
    Nikki

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