PostOp

[susannajon]

Hi Jennifer, How's Nicole doing today? Neuwirth, one of the five surgeons we are considering, cancelled our appointment last Friday. He had emergency surgery. My daughter was so depressed. She has been looking forward to our adventure "in the city". After the cancellation she was really acting out and obviously depressed.

My daughter acts so grown up and in control when it comes to issues around the scoliosis. When we talk about surgery and doctors, she behaves in a calm and adult manner. Then, I get the calls from the teachers, saying she's not doing her homework, and seems very flip and unconcerned. In addition, she's really struggling with her spirituality (questioning her faith, the existence of a higher power, her place in the universe, etc.) I have to assume that this is normal behavior for someone facing major, potentially life changing surgery.

Anyhow I'd be curious to hear from other moms about their kids' behavior leading up to surgery.

Susanna

[lrmb]

Hi Susanna,

Something you wrote really rang a bell with me. After a traumatic few months, I've now decided to wait for another few years before having the scoliosis surgery. But the whole experience - and the back pain I experienced - was really challenging for me in terms of my faith. I've dealt with other difficulties in life, but perhaps none so difficult as feeling like my prayers were for some reason going "unanswered" and not understanding why I would have to go through this. I think one of the worst things in life is really worrying about _yourself_, and are you really going to be okay in the end. Having come out the other end of the tunnel (so it feels!) I think I would have found it very useful to talk through these issues. One other thing that was also very useful to me was to have people emphasize the things that would continue after I had surgery; to realise that life goes on afterwards, and it's something you have to get through and over rather than an end point. Depending on your daughter's age, perhaps you could help her find something else to focus on or distract her a bit, by thinking about or planning (maybe a new hobby/learning a skill/talking about college or what sort of job she would like, etc). It's so easy to obsess about scoliosis and surgery! But for the ones in our charge, distraction might be some of the best help we can offer.

Take care and good luck. ~Laura

[MaureenA]

Hi Mamakay,
I am new to this forum, but was glad to see some similarities with my daughter's surgery and yours. Laura had surgery on Nov 18, so we've been home for only one week. She is in a lot of pain and seems to have insomnia. I called the docotor today because her pain meds are gone (oxicodin) and they will give her tylenol only. I gave her TylenolPM last night and it didn't help at all. She is 16 years old and had a anterior/posterior entry for congenital kyphosis. She also had a rib removed for the fusion and is having pain at that site and where the chest tube was. Any suggestions? Is the pain and discomfort normal at this point? I think your daughter's recovery is a couple of weeks ahead of my daughters, so any imput would be really appreciated.

[jc3]

post op

hi maureen
i thought i'd post to you since my daughter is 14 and also had surgery the same day as mamakays daughter (nov 3) You are a few weeks behind and at 1 week at home my daughter was still in a considerable amount of pain. It does get better! I promise. We are now 4 weeks post op and she is doing so much better. I think each week she felt somewhat better, not by the day, but each week you will see a difference. I'd say after the 3rd week there was a big difference. The first week at home was tough on her. Just hang in there it really does get better. My daughter also had ribs removed as well.

jennifer

[Carmell]

Hi Maureen,

I wanted to send my best wishes to you and your daughter for a continued smooth recovery. Hopefully each day will bring more good moments than bad. And soon, you will have more good days than bad.

I also wanted to mention that bone surgery is one of the most painful surgeries to recover from. I would call the doc back and see if they could give her something a bit stronger than just Tylenol for pain. When Braydon (age 9) has surgery, he comes home with Lortab (Tylenol with hydrocodone) to keep his pain manageable. There are several options for pain medications. Her surgery was very recent. I would hope the doc would consider helping her be a bit more comfortable.

Good luck and please keep us posted. (Maybe on another thread since this one is pretty long already.)

[mamakay]

Hi Maureen,
I just read your mail here on your daughters surgery date and pain medicine.
I cannot believe she can make it with out any real pain drugs!!!
This is ridiculous, you should demand ,cry,lie and and do whatever to tell that Dr she IS in alot of pain and remind him of what all she had done!!Even bother the on call Dr.
Sometimes I think they test us to see if we are babies and can really do without.
I would post his name so other children will not have to go through unecessary suffering, this is the year 2004!
My dr said recovery can vary from 2 weeks to 6weeks..and this "surgery is like getting hit by a train". Now you get on that phone for your daughter and absolutely demand some medicine!!!! No wonder she has insomnia, she is hurting.
Let me know and don't give up!!!
kay

[mamakay]

Carmell,
Thanks for the plastic surgeon advice, I think that is a good suggestion I just hate to keep exposing that area. Do those type wounds take a long time to heal as her surgeon said?
Did Brandon have something like that?
I am not worried about the cosmetic look of it as it is high on her neck, just keeping it healing asap and clean is my main concern now.
Did you have Brandons monitored by a plastic surgeon and the Dr ? What was your concern?
And now as she lays down she gets nausea and has been throwing up for 3 hours, Has any one had the nausea lasting this long? They say it is her medicine but she has not had any for 8 hours, I think she has the flu?

Maureen,
Another thing about the pain managment, to help you know how much pain your Laura is in tell her to tell you on a scale of 1-10. Yes the bone area is painful and discomfort is unevitable , so discomfort but NOT constant pain is what I would expect, just be there and baby her as much as possible, pillows compassion and maybe a small gift once in a while to let her know you know this is a big thing and you care.
Good luck, Kay

[jc3]

post op

hi kay
just wanted to know how steph is? Is she feeling any better. Hopefully it is the pain med's making her stomach sick, i hope she doesn't have the flu or a virus. That poor baby. Let us know how she is doing.

jennifer

[MaureenA]

Thanks Mamakay, Carmell, and Jennifer!
We've had a tough day today, but your replys made such a difference. I called Laura's Doctor, and she was prescribed vicodin. The tylenol was not working. (Say a prayer it doesn't make her sick!) I told her about your responses and it was such a ray of light for her. She had a tutor here for about an hour today and it seemed to get her mind off the pain. In some ways, she seems to be doing fantastic. She showers by herself, goes up and down the stairs several times a day, and even sits at the table for meals. Once she gets a handle on the pain she should do great. Thanks again and I'm so glad your children are doing well.

[jc3]

post op

hi maureen
my nicole was on percocet and they just switched her to vicodin. I think the vicodin is not as addicting as the percocet and nicole has been doing fine on the vicodin. I'm sure you will see a difference from the tylenol. Nicole wanted to try tylenol last week but it didn't do the job so we went back on the pain meds. Hang in there things will get better real soon, but she sounds like she is doing excellent already!
we're all here for you
jennifer

[mamakay]

Hi Jennifer,
Thanks for wishing Ste better.
I inserted a phynergram (poorr thing) and it made her sleep most of the day, then she woke up with a horrible headach (which scared me) so I called the Dr and he wasn't sure why she is sick, maybe the flu? So he prescriped some oral pills for her nuasea (sp?) and MORE antibiotics. He wants to see her next week to check on the incision not healing.
I still want to go to a wound specialist plastic surgeon as Carmell suggested, so I may call around and see if I can find someone here and at least talk to them.
I am happy for Nichole and Laura getting along so quickly and they had so much done!! Ribs and Laura anterior too.
Thankgoodness Laura got some pain medicine, I wish Ste could've taken the vicodin, she is still taking the Tylenol 3 but not as much.
Keep in touch, kay

[Carmell]

Sorry to keep adding to this post, but I had another thought. Braydon has to take Valium for a few days post-op because of muscle spasms. "I" think his muscles spasm more than most because he's so lean. The muscles don't have much support. Maybe some of the discomfort is coming from muscle spasms... just a thought.

Kay - you listed several very good reasons TO BE SEEING a wound specialist. A plastic surgeon will be able to help the incision heal in the best manner, including being as narrow and flush with the skin as possible. It may take months, but it is a do-able thing. Braydon's "problem" incision a vertical incision is on his leg/ankle. His shoe and sock rubs it constantly keeping it more painful than it should be. Also, he is supposed to wear a brace on that leg at night. Not at all possible with the pain and discomfort of the incision/scar. The plastic surgeon/wound specialist is helping a great deal. He has been able to wear the brace about 4 nights in the past week - much better than not wearing one at all. Keep calling the docs and asking questions. You will be able to help her more by giving her answers from the docs who know her.

My best to all!

[MaureenA]

Hi Kay,
I hope your daughter is feeling a bit better. That poor child. Laura had some stomach cramping the other night and it scared her a lot. Hang in there!
Thanks for all of your help with Laura. She had a good day today. She actually laughed at something I said! It must be the pain meds. She slept about 4 hours last night-a big improvement-so I'm hoping she'll sleep well tonight. I found out that the office contact that I called on Monday never told the Doctor about her pain!! When i called yesterday, he took care of it immediately, thank goodness. I can see how these kids really need as much help as they can get. Her ribs are feeling better too. Thanks for all your great advice! Hope you all have a restful night. Maureen

[Peggy]

Maureen & Kay,
You guys are doing great! I think there should be a special award to all the moms (not leaving out dads..) of scoliosis kids. All the love and effort and caring that really pull these kids through. Being moms we always put ourselves down on the list. But thumbs up to moms everywhere dealing with all of this daily. I am so proud of you! Hang in there, stay positive and tough. Its been 8 months since my daughter had surgery. I check in here every so often to see how everyone is doing. Remembering all of you daily in my prayers of thanks for getting thru this ordeal and praying for the same result for all of you. Know that you make a world of difference to your kids. Love does conquer alot of things. Best of luck and continued successful recovery.