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16 year old daughter just had surgery.....help

My 16 year old daughter had her surgery on Friday, 7/12. It has been HORRIBLE. She has rods from T2 to L2. She is still in the hospital and in constant excruciating pain. They took her off the morphine drip today and she is taking percocet every 6 hours, morphine injected into her IV every 2 hours and Valium. She literally trembles and shakes all over with the pain and does nothing but cry. No position helps. The pain meds only take the edge off temporarily.....for like, an hour. We knew this was going to be bad but I honestly thought the pain would be more controlled, especially in the hospital. :( The surgeon acts like this is all perfectly normal and said something about releasing her on Friday!!! She can't walk by herself, or go to the bathroom without help, or sit up in bed. How in the world will I even transport her home in our car?!! I am ashamed to say I did not prepare for this enough. What can I do to help her when we get home? What pain medications worked best for those that had the surgery? I need advice and reassurance that this does get better. My baby is in so much pain and I can't do anything to make it better, her father and I feel so completely helpless.

Thanks for reading.


  • jlrfryejjlrfrye ohioPosts: 1,110
    edited 07/17/2013 - 11:43 PM
    Before the release DEMAND that the pain Dr on staff at the hospital be seen before she is released. Her Drs are not giving her the proper meds to reduce her pain. Be very assertive and do not take no for a answer. All hospitals have one on staff and explain to her docs that you feel this a meeting that must take place before she is released. If for some reason they do not comply call her family DR and have a appointment ready for her with the Pain Dr when she gets out. Be pro-active in her care and do not tolerate what you feel is uncomfortable for your daughter. One of the rights as a patient is to have your pain under control and tell the hospital that what they are doing is not helping so now it is time to call in the specialist. Do not take no for a answer even if it mean going over the Drs head and filing a complaint with the Director of the hospital. Sometimes one must be a xxxxx to get things done but it will get it done

    Post Edited for Inappropriate Language by The Spine-Health Moderator Team
  • AllMetalAAllMetal Posts: 1,189
    edited 07/18/2013 - 1:41 AM
    First I just want to tell you how sorry I am that you and her Dad are going through this. Having been the spine patient as a child and adult, there are a few things I'd like to share about my own experiences. Take them as you will, I don't type them to disagree or upset other members or yourself.

    #1 Despite her pain, this is worse on you than her. I have never watched one of my children go through spinal surgery, but I have had experience with medical situations with my own children... and I'd go through EVERY SINGLE SPINE SURGERY I've ever had... TWICE to not have to watch my kids suffer. It's horrible, all of us parents on here recognize this. Try to keep this in mind with dealing with your daughter. As bad as her pain is (and I know its bad... again... experience) in your heart/mind, its worse, that's natural as a mother I think.

    #2 You will set the entire tone for her recovery. You will. It is important that through out this process (and its a long healing process) that you remain positive, assertive, and "no non-sense". Despite what you hear from the doctors/nurses, don't disagree with them in front of her, take it back to the nurses station. It's important that she feels like everything is under control and despite the pain progressing on track. Fear will not help her. It is also important to make her do everything the doctor says to do despite the pain (again, if you think its causing more pain then it should, or you are concerned about it, by all means, talk to the doctor/nurse, you are her best advocate, just be sure you keep the tones as positive as you can in front of her and if possible have any of your fears discussed not in her presence.

    This leads me to #3.... This is NOT the time to become her BFF, this is the time to remain her mother. Once she has healed you can discuss with her any lessons you thought you might have "stolen" from her during this time... IE speaking up at the hospital etc. I know I HATED my mother during my recovery from my first spine surgery. I thought she was horrible because she didn't in my opinion show a lot of sympathy etc... she was like a drill Sargent putting me on a schedule with walking/etc. She didn't tolerate me complaining... heck, through it all she never even cried (in front of me)... Clearly she didn't love me right? Clearly she didn't understand.... It wasn't until I was older that I realized how hard it was for her and how much worse my healing would have been without her. Now clearly, this doesn't mean you shouldn't be compassionate to your child... just remember, be the mom, not the friend.

    #4 Expect a moody teenager for awhile... expect it... Try not to take it personally as best you can.

    #5 What tools does she have to take her mind off the pain? This is a huge key in healing. For now, does she have a laptop/Ipad? More importantly, I was taught and firmly believe that the more you can use your hands the less you think about the pain. Does she know how to knit or crochet? Do you? If not... consider buying one of those "teacher yourself" kits... lots of stores have them and they aren't too expensive. Ask your daughter about it, learn together. Remember you are her mother, so you can in some ways demand she try it at least... and if this is so not your thing... what about cards, UNO etc... if she doesn't want to play with you, call her friends and explain the need for her to use her hands and have them come over to play cards, or even put together puzzles... anything you can think of that will make her use her mind and hands.

    #6 Make time for YOU... time for you to cry/destress/get out. The better your frame of mind, the better you will be able to help her through this. Go out and get a mani or drinks with a friend. You need to do this regularly.

    #7 Car ride home..... Wait until just after she receives her meds to leave. Let's say she has just received her meds and then they tell you she is going to be cleared to leave which can take an hour easy... ask to remain until she gets her meds again, especially if they don't seem to give her a long amount of pain relief. She can recline the seat, and just do the best you can getting her home. Have her Dad go ahead and get her Rx so she doesn't have to wait at the pharmacy with you, etc. It's best to get them the day before if your doctor allows this, mine always have but I've had to ask for it because usually they are given at check out. Invest in a quality ice pack (by quality I mean you can google ice packs, I have one that costs around $25 and is blue), I know that's expensive for an ice pack, and maybe she won't use it much... but they last YEARS... and I've certainly got my $25 out of mine. They are more comfortable to lay/sit on then the cheaper kind.

    Unfortunately, it will be awhile before you can take care of herself (restroom, showering, etc) If you are concerned you can't handle this at home then ask your surgeon if she could be released into an inpatient rehab facility. Your surgeon probably doesn't think this is necessary, but if you request it, he might decide to allow yall to try it. Do you have things at your home she needs? She will need at minimum a potty chair thing that raises the seat (can't remember their official name) and probably a shower chair. I know my family made it work with a lawn chair, but the shower chairs are more stable. The truth is your home will have more "pain distractions" and she will probably be more comfortable at home to heal. Consider buying her some "silky" sheets to help her move around in bed easier or the "silky PJs", don't get both though (static).

    Please feel free to private message me any questions/concerns/rants. I'll keep your daughter and you in my prayers. Thoracic surgeries are brutal... they truly are... but I have found once you get over the initial "hump" they tend to have a less affect on the patient's life... she will still have lots of mobility in her spine, and that's a good thing... just got to get over this worst part. Best of luck to you all.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • thoracic spine painthoracic spine pain Posts: 566
    edited 07/18/2013 - 3:31 AM
    You do need to get her pain under control. I agree with everyone, they were going to send me straight home after I damaged my thoracic, but ended up being in hospital for around 10 days. Broke lots of other stuff too but the thoracic pain is the worst pain I have ever felt.

    Worse pain than when the IV drip wasn't actually going into my body after another major surgery.

    Just check that the IV is actually in cause they tape it and don't notice if it has pulled out as I kept pushing the pain killer button - must have wasted a lot - heard them talking about how much I was using until they realised the needle had come out and had no pain relief for about 6 - 7 hours, straight out of the operating theatre.

    They only checked cause my family came in and made a fuss.

    There is no reason she should be in that much pain - I agree demand they increase it until it is manageable. They'll use the excuse she'll be on it for a while and they don't want to give her too much to start as she will get used to it but really who cares. Do what it takes to get her pain relief - get the meds up now, worry about the rest later. I also found distraction like watching movies distracted the pain a bit.

    If you are in pain you can't advocate for yourself.
  • MamaBear76MMamaBear76 Posts: 3
    edited 07/18/2013 - 6:43 PM
    Oh my gosh, thank you all SO much. I needed to hear all of this. My husband and I are both very reserved, non-confrontational people but I am going to ask for a consult with a pain specialist tomorrow before they release her. The surgeon wanted to release her today and I did say no way, she is not ready. His comment about her pain was "this is as good as we can get it". It was better today. She is completely off the morphine and taking percocet, an anti-inflammatory and an anti-nausea. I just went on Amazon and overnighted a toilet seat extender with handles, a shower chair and ice packs. Has anyone ever tried a body pillow? Not sure if that would be helpful? I was also going to ask for a peri bottle for bathroom cleaning. She started her period today (great timing right?) and is horrified that nurses have had to help her with that. She still will not eat. She is drinking water and has had a few bites of broth, applesauce or pears....in a week. Also, her feet are really swollen and puffy!! The nurse said it's normal and just fluid retention from all the IV fluids she had. I am so glad I found this site. Again, thank you all so much for your kind words and advice. I feel better having a plan. :)
  • I can't sleep without my body pillows... I take them on every single trip. I just buy the ones at Walmart and they seem to work fine. I know when I was pregnant I spent lots of money on specialty pillows and in the end, didn't like them as much as I thought I would. The body pillows at the store aren't too costly so I think if you don't have one at home you should pick one up. If after a few nights she is still unable to sleep, you can revisit the pillow idea. You might find may more pillow options under "pregnancy pillows" than "spine pillows" (and yes, I know your daughter isn't pregnant and doesn't need belly support, but they also work with alining the spine). Also sometimes simply using more pillows can help, even the ones you have around the house, pull them out of the closets, etc. Something else you might want to ask the pain specialist about is a muscle relaxer. Yes, it's another "powerful" drug usually, but I found that they helped me immensely after surgery. It's an option you should ask about for sure if you feel her pain is not improving. She also needs to be on a stool softener (she'll love that...lol)... but seriously, that is important and I'm shocked they haven't already started her on one. Another medication she can try is a nerve medicine. They don't generally work right away, they do have some side effects (what med doesn't?) and I know they can cause more mood swings, but if her pain isn't improving, its another option you should be aware of. Try not to worry too much about the food issue. I think this is common for many after surgery to not eat. I know personally I wasn't able to eat until after I had greatly reduced my pain meds. Nutrition is important in healing, but the first couple of weeks I wouldn't stress too much about it one way or the other. After that fruit/veggie smoothies are an option and I'm sure many of us could give you tons of ideas about what types of foods might work, even for teenagers, but you might see a big improvement in her appetite in another week.

    And bless her heart about her period. I'm sure she was horrified. Heck, I was HORRIFIED to need help with feminine issues after my C-Sections and I was 27, I can't imagine being 16. Hopefully it will pass quickly.

    Fluid retention is normal, I think you'll find this to start to reduce in a few days, but if you don't be sure to call the surgical nurse to let them know. Also be sure to ask for a follow up visit next week with your surgeon. I know many on here don't see their surgeons until the first month, but with all she has had to go through I don't think it should be out of the question for you to see him next week or early the following week. It will give you a chance to discuss your concerns as well as your daughter's concerns.

    Please assure her that many women went through these surgeries as children/teenagers, continued life, completed college, have all types of different careers, families, hobbies.... it will get better.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • Put a pillow in the car for ride home.It made a difference for me.I also had a nurse and therapist come to my house the first 2 wks.The dr ordered it.Also a walker I got a prescription from dr for it.Your daughter will get through this ,the pain will get better.Ice packs were and still are my savior.You are not alone.kathy
    Kathy B
  • thoracic spine painthoracic spine pain Posts: 566
    edited 07/19/2013 - 4:37 PM
    Look up her medication on Wiki and find out what it is all for. For me really strong painkillers didn't work until they were combined with a muscle relaxant. Just realised All Metal has advised this as well but it is really important. Otherwise your muscles spasm so much that you can't get any relief. So please make sure she has a muscle relaxant as well. I take Rivrotril - probably called something else over there - I'm in Australia, but Valium works better, the problem is they are addictive, but I would worry about that later. Also there is a drug called Kalma, look it up on Wiki - it has a different name overseas and they are just changing it to a restricted drug in Australia but you should still be able to get it over there.

    As All Metal said a stool softener is really important as well. She needs that straight away. I have to take something everyday because of the medications. At first if she hasn't had her motion, you can buy enemas from the chemist, or even better ask the hospital if they have given her one or get them to give you a couple to take home. Don't know which country you are in but in Australia they will give you them for nothing. They are not hard to do - bit embarrassing - but that is important - or otherwise buy some normal stool softeners from the Chemist.

    There is one you need to be careful off, I have part, shortened about this laxative from another site ' when I said Miralax to my Internist he jumped out of his seat saying that only 3 days ago he received Red Flag on this drug b/c its right now under watch for being very toxic. The main ingredient of this product is Polyethylene Glycol which is simply... antifreeze the agent we use in cars.' (Quote of full post below). I noticed they were still stocking Miralax at my chemist so DON'T use that.

    I always research any drugs they give me - if she has a reaction to any of them you must contact your Dr immediately as some drugs can make you sicker so I stop taking these immediately and call my Dr.

    If she hasn't been given fluid retention tablets I would also ask for some as that can be pretty painful too. She only needs to take them for a short while until her feet go down.

    As All Metal said a pillow is a great idea. I slept on my back for years, as I couldn't get comfortable and still now can only sleep on my left side - I do use a pillow between my knees as well, seems to work better and I got the advice from this site.

    Hope she is doing a bit better, I had a TV and CD in my bedroom and got all the TV series, Chapter after chapter cause I couldn't sleep so sometimes used to stay up all night watching movies to take my mind off the pain. A bit old fashioned I just realised.

    A laptop would be better as All Metal said. There are free movie channels that you can get to see movies for free legally. There is a site called ask Bob where he lists all the legal free movie sites. I use the Sony site (can't remember the name) one but you have to put up with ads if you want to watch the movies for free. There are also lots of other sites. Just type in free movies legally and Ask Bob comes up then search through his site.

    She also needs something to make her sleep, as it's really hard to heal without sleep. I had to do all the research myself I hate to say. Thoracic is not as common so there is not much information.

    There is another person on this site who is posting information about his thoracic surgery so that might be worth reading as well. It's under the thoracic pain forum. You can personal mail (PM) people on this site so you could PM him as well for any advice.

    Everyone is different and ice didn't work for me. They say ice first then heat. Only heat worked with me - don't know what the ice did but it is supposed to take down the swelling, it just didn't work but heat wheat packs or hot water bottles wrapped in a Tshirt really helped. I own lots of wheat packs. Also when you put a heat pack in the microwave make sure you put half a cup of water in the microwave with it as otherwise the wheat can burn.

    To end on a good note - read some research that chocolate is good for pain.

    Hope she is doing better today.
  • flowerpotsfflowerpots Posts: 379
    edited 07/19/2013 - 4:01 PM
    Are you kidding me,ive been taking IT since surgery!!!!!
    Kathy B
  • It is one of the sticky notes on another health site at the top of the page. Under back pain forums. Will PM it to Ron and he might be able to put it as a sticky note on this site.
  • thoracic spine painthoracic spine pain Posts: 566
    edited 07/19/2013 - 4:29 PM
    Stop Miralax (laxative) ASAP
    Hello to all!

    Being on pain medication myself I know what kind problems it causing when it comes to bowel movements (sorry to talk about it, but it every day struggle for many).
    I was on Miralax for years and despite it's nasty taste, it served the purpose.
    I had to go and see my Internist and he asked me about all medications, vitamins I am taking. When I mentioned Miralax he jumped out of his seat saying that only 3 days ago he received Red Flag on this drug b/c its right now under watch for being very toxic. The main ingredient of this product is Polyethylene Glycol which is simply... antifreeze the agent we use in cars.

    It may cause severe kidney damages; neurological issues, Autism in children (!!!!) and so much more.
    Despite it all, for some reason pediatricians prescribe it to very young kids, as young as 3 years old.
    So once again, it takes many people with kidney and other damages, destroyed lives to take it off shelves?

    Knowing that many of you may be on Miralax, I decided to share with you what I learned.

    I have PMed Ron with a copy of the above post (sticky note) so hopefully it will be posted as a sticky note here.
  • Im stopping it.Thanks for the info.
    Kathy B
  • MamaBear76MMamaBear76 Posts: 3
    edited 07/20/2013 - 11:14 AM
    How bad was everyones fluid retention/bloating after surgery? My daughter has literally not eaten for 6 days but has gained 10 pounds! Her feet, stomach, buttocks and back are very squishy and uncomfortable.
  • She may find having those areas lightly, very lightly stroked. If she permits, see how much you can increase thestroking to gently rubbing or massaging those parts. It should help the fluid retention to break down and move on.

    Is she home now? Remember to take time for yourself.
  • JenGJJenG Posts: 232
    edited 07/20/2013 - 8:39 PM
    You've just been through a horrific ordeal but you've received some good advice here. Yes, swelling is normal, and if she's been given extra lordosis, her organs will be pushed forward. This can take months to settle but is normal.

    I'm unhappy with her surgeon telling you "this is as good as it gets." They can relieve pain, if not completely, a lot better than what you describe. The advice for you to stand up for her is good and in fact, can be life-saving on occasion. But the worst is behind you now and she's ready for home, if not there already. If not, I always give the advice to tell staff to give her extra pain meds before the journey home, bring lots of pillows for her comfort and preferably, have her able to lie down.

    I think you'll see a remarkable recovery (teens do very wel) in the next few weeks. Best of luck. Jen
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