View Full Version : upcoming surgery
28th April 2005, 05:08 AM
Hi there. I haven't been to this site in a couple of months, but tonight I thought I'd just check in and see what's been going on. Well, my little girl is scheduled for surgery on the 26th of next month. They are going to be doing a partial fusion on an area where she has a 70 degree kyphosis. They're also going to be removing a hemivertebrae. Her doctor had hoped to perform a complete segmentation of the vertebrae (4 of them) that are congenitaly fused together, but now he doesn't seem to feel as confident as he once did. I guess that's because he didn't realize how quickly her curves were going to increase.
I'm dreading the surgery more than I can express. I don't like the unknown. Has anyone out there had a child that was in a body cast after a spinal surgery? I am so worried about how I'll be able to take care of her. She's only 17 months old and is still in diapers. I guess they'll show me how to care for her diaper area while I'm with her at the hospital. I've just been wondering if it's going to be as difficult as I've worked it up to be in my mind. Any words of wisdom from someone who's been through this sort of thing would be greatly appreciated.
Please remember my litlle Lindy in your prayers.
28th April 2005, 06:57 AM
Lindys Mom, I have been having a time of it lately with my scoliosis but then I read your post. God love ya. What a brave Mom you are going to have to be. Scoliosis in a child is heart wrenching. There are lots of Mom's here that can help you through some of the stuff - the rest of us can have the best thoughts and prayers for you. Its also a good place to just talk. Oh yes. I almost forgot we are definitely a crazy bunch but Welcome. Welcome!
28th April 2005, 09:45 AM
I posted in another thread.
I had my fusion at 11 months. I wish my mother wasn't self-conscious about being dyslexic... I can't get her to join the message board, and she's a real veteran. Anyway, I'll ask her for details regarding the care (bathing, diapering, etc) of a toddler in a body cast. In fact, I'll copy your post and email it to her, then post her reply.
Who is her surgeon? Are you in the U.S.? Have they considered alternatives (besides casting)?
28th April 2005, 11:35 AM
I think with 70 degree kyphosis surgery is your only option.
There are plenty of mothers here with experience of caring for a child in a cast.I wore one post op myself but I was in my teens.At least they're comfortable.It's good that finally Lindy will have her surgery over and done with.Anything at all that we can do to help, just let us know, we're here for you through the good times and the difficult.
28th April 2005, 12:12 PM
Hi Holly, nice to see you here again. Surgery or anaesthesia on a child is certainly very scary, and I can't speak for having gone through the surgery bit, but I often find with our hospital visits, the worry and nerves beforehand are worse than the actual being there and doing it. I'm sorry that this has come to surgery, and the others have spoken about looking for alternatives if you haven't already, but I'm sure she'll do great. I've lived with a child in a cast for the last year and it's really not that bad. I don't know if post-surgery casts are the same as plaster jackets that Erin wears, but you quickly get used to it. Nappies (diapers) are tricky at first, but they will show you the best way of putting them on and then you'll adjust that to suit yourself. The main thing is to change them more regularly to stop the cast getting wet or soiled, but there are bound to be accidents and when there are, you just clean the cast as best you can. Never be tempted to use a hairdryer!!
I don't know how long Lindy will be in a cast, but I've just potty trained Erin in hers and it can be done too, so don't worry that she'll be delayed because she's in a cast. She'll learn to climb, bend, and do everything she does now with the cast on, although she will have to adjust to doing things differently. eg if Erin wants to pick something up, she won't bend to get it, she'll squat and pick it up between her legs. She'll certainly have strong legs!
Good luck with the surgery. Feel free to pm me if you have any more specific questions or if I can help at all.
Take care. You'll both be in our thoughts. Make sure you put the date in the calendar so we're reminded of when it is and can keep her in our thoughts and prayers.
28th April 2005, 10:39 PM
As I said I would, I shared your post with my mother. She replied with this:
Hi, My name is Barbara, I am Kimberly's mother. Kimberly got her first cast when she was 6 weeks old. She was in and out of cast for about half of her life from birth to two years old. Her curve was so severe this was the only way they had to try to slow the progress. At 10 month she had her first surgery and a second at 19 months. The biggest problem I had was the diaper area got wet no matter how hard I tried to keep it dry and Kim would have a case of diaper rash. They give me some mole skin material to put around the area. I was changing this all the time and it did help. I also found that leaving the diaper open when I could would let things dry out some. They changed the cast ever 4 to 6 weeks which helped. Finding clothes that fix over a body case was another problem and then Kim decide that she was going to walk around in her body cast this was harder for me than the diaper rash. I was so frighten she would fall and hurt herself. Also for the second surgery the incision broke down and was not healing well due to the cast. The doctor cut windows over those areas so I could care for them. But she survived the diaper rash, the walking, and wound breakdown, and so did I. I know you think you can't do this that you don't' have the skills. You begin to think that you need a nursing degree just to care for you child. But you will surprise yourself. You will be able to handle this. The biggest issue for me was how to raise Kim in a society this so fixated on a persons appearance to have a good self image and healthy self esteem. I know you manage this and some day your daughter will be this great young woman that you are very proud of just like I am of Kim.
*wipes tears* I'm so glad I was the patient and not the parent. I can't imagine what she went through... and what you're going through.
28th April 2005, 11:16 PM
I seriously have tears rolling down my cheeks after reading your mum's reply Kim. Her last two sentences just about summed up my fears about raising an imperfect child in a perfect society. I can only hope I do as well as she did.
29th April 2005, 01:54 AM
I've seen Erin in person, Andrea... she's as resilient as me. You've done so well with her, already. Just keep doing what you're doing, because you're on the right track. *warm smile*
I'm SO glad I'm not the parent.
29th April 2005, 06:53 AM
Sorry to hear that Lindy has to have surgery, I know how worried you must be. Like Andrea, I have only expereince with my litttle girl being in a cast without surgery, and I have far less experience than Andrea with that. Niamh adjusted quite well to her cast, the most difficulty she had was sitting down from standing up and standing up from sitting down. As Andrea said they find their own way of doing things. We were advised not to force her into doing anything a particualr way, just to let her find her own natural way of adjusting. Changing diapers is a trial at first, but you get used to it. What they advised us to do for night and it worked really well was to get newborn diapers and to cut them own to fit inside the usual diaper, like a pad. I am mortified to admit that I actually did not have to cut them down, they closed on Niamh fine, she really is so skinny.
I can't think of anything else at the moment, but if I do I will post later.
Kim, your mother's words are really lovely, and I really hope that I can bring up Niamh to be as generous of spirit and self assured as you are. She did a great job.
29th April 2005, 12:14 PM
Hear Hear. Parents really do have the hardest time - I realise what my parents went through now that I have a child approaching the age I was when I had open heart surgery. But Holly and all the other moms and dads, please take inspiration from the fact that ALL of us have overcome our scoliosis to live full and fulfilling lives. While physical perfection is rated highly today, the thing about not being *perfect* is that your friends/partners tend to be of the less shallow variety. :P
Even more importantly, scoliosis treatment is so much more advanced now that in was 20-30-40 years ago that your children are likely to avoid some of the worst longer term scoliosis related problems (lung function impairment in particular).
29th April 2005, 02:51 PM
Appearance wise, nobody is perfect. Sure there are a few models out there that come pretty close BUT are they truly happy ???? :-D
You're such a sweet girl, do you have a boyfriend right now ? I'm sure you know appearance isn't everything, although health is VERY important. Take care of yourself "K"
30th April 2005, 12:15 AM
*wrinkled nose* I do not. I have an ex-boyfriend who would like to remove the "ex" from our relationship. But that is not going to happen. I would rather be single. Meanwhile, I have no potential suitors. At least, none that I know of.
But that's more my fault than the scoliosis. I'm incredibly picky. After a few months of dating, I realize he's not going to fit in with my family, or I just don't enjoy his company enough, so I break it off.
4th May 2005, 11:21 PM
Wow, Kimberly. I'm still wiping away the tears. Please thank your Mom for her message. I appreciate her honesty more than I can say. I really needed someone to tell me what it's like caring for a child in this situation. I need to know what to expect so that I can be prepared and better able to care for my Lindy. I feel a little more prepared now that I've read her words. She sounds like an exceptionaly strong woman. I hope to follow her example. You must be very proud of her; with good reason!
Lindy's surgery is scheduled for three weeks from tomorrow. As each day passes I find myself getting more and more afraid. I don't know how I'm going to be able to hand my preciouse baby to those doctors and walk out of the room. I become gripped with fear every time I think about it. I try not to dwell on it, but I can't lie, it's always there with me. Knowing that other mom's have had to do this too helps me though.
Please pray for us. We need it now more than I ever imagined we would have.
5th May 2005, 10:45 PM
Just to let you know we are thinking of you and Lindy.
5th May 2005, 11:08 PM
Let us know when the surgery date approaches - I'll be sending lots of good thoughts Lindy's way. You'll be surprised at how quickly she'll bounce back from surgery, it's quite remarkable ! Good to hear that they aren't planning to fuse too much of her vertebrae. Are they doing an excision surgery ? If so, I've heard very good things about that type of surgery. Take care of yourself :squeeze:
6th May 2005, 07:20 AM
I've almost got my mother willing to join the message board (she's very self-conscious about her dyslexia... and if she does join, she's going to see that I wrote that, darnit). I did pass along to her your appreciation, and she was very glad she could be of some comfort. Let me know if you have any other questions that my mom might be able to answer for you, or if there's anything that she didn't cover. We're both keeping you in our thoughts.
6th May 2005, 04:16 PM
Kimberly, you should really encourage your mom to join the message board. Tell her not to feel self-conscious about her dyslexia. Her spelling errors won't be any worse than mine and I don't even have that sort of problem! I have no excuse. Ha! I really believe that she has a great deal to offer other people out there that could benefit from her personal experiences. I know I did. Well, good luck and keep working on her.
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