Kimmy's Post-Surgery Status

[ca-native]

Hi Everyone,

I’ve been trying to figure out how to post Kim’s progress. It has been 11 days since her surgery and most of the time she acts like she never had surgery. My initial elation with her resilience has now been tempered with fear that she might injure the fusion area, I am even afraid she might have already done so. This Wednesday we'll see the doctor for her two week post-op visit and I'll ask him if he thinks she might have done any damage to her back. Let me explain a little further.

She was fitted for a brace for protection because her autism can cause her to have impulsive behaviors. I was hoping she would only have to wear the brace when we were out and about in the community, school, etc. but now I have been putting it on her as soon as she wakes up in the morning. It became too nerve wracking to watch her movements out of the brace because she was so fast: I would catch her twisting, bending side to side, even trying to pick something up off of the floor (she was sitting in a chair when she would do these movements). I would stop her as soon as I could (someone has to be with her constantly) but the bottom line is because of her developmental disabilities she doesn’t have the mental capacity to understand these movements are bad for her healing back. I just hope any damage hasn’t been caused before I realized she had to wear the brace during all of her waking hours.

She doesn’t like the brace, think Xena the Warrior Princess style, but it does give me much more peace of mind when she has it on. It's hard to watch her cry when it is put on and then asking for the brace to be taken off (more tears) throughout the day. I’ve had to give her Ativan (anti anxiety med) on a couple of the days to calm her down when she is in the brace.

For parents that are struggling with typical children who are very upset with the pain (and that is very difficult to watch our kids suffer), the upside to that is at least they are being more conservative with their movements and hopefully communicating with you much, much better than my over-active/pain resistant Kimmy.

I was so flipped out over the surgery and now realize I should have been more prepared for the post-op period; making sure I understood the type of brace she was going to be fitted for and working with a behavior specialist to invent strategies to help Kim get adjusted to this bulky device.

Sorry for the long post but I know this is the one place where I have friends who really “get” what this is like. Thank you for listening and I’m sending cyber hugs in gratitude for your support.

[Wishing]

Dear Elaine,

Congratulations on Kim's wonderful correction. You sound like such a loving, devoted mother. I hope you are able to take care of yourself so you don't burn out, and hope you have some family to help you at this time. You need to be able to get enough rest and replenish yourself to be able to offer the best to Kim. Take care and good luck with Kim's appointment.

[Susie*Bee]

Been wondering about Kimmy--so thanks for posting!

Elaine-- isn't it funny how we can expect one thing to be the major problem (post-op pain) and it turns out to be something entirely different that causes the problem instead. It is such a relief that Kimmy didn't experience the pain you imagined she would, and not be able to understand it. I don't know too much about what can happen if you overdo that quickly post-op, but hopefully she won't have done any damage before you realized she would need the brace full-time. Wish I could give you some suggestions about the brace... I wonder if finding photos of others wearing braces would help any. Or in some way helping her to feel happy about her brace--- having ownership in it some way, maybe you could draw fun pictures on it and write her name while she's asleep????? I wore a TLSO brace for 5 months post-op, and I'm sure markers would have worked well on it. I'm just trying to brainstorm and not doing very well at it. Sorry!!! Maybe someone else will come up with GOOD ideas.

[trulyaries]

Elaine -
Don't beat yourself up too much for not anticipating the post-surgery challenges. In spite of my having had four surgeries, it's surprising to me that everything has been so different after each surgery - different pains, different drug reactions, different instructions, different issues.

You have quite a challenge with Kim, and it sounds like you may have to think of creative ways to keep her compliant with the brace. I'm sure you'll have a lot of questions for the followup appointment; hopefully your surgeon will have some suggestions as to how you can cope or where you can get some assistance. Best of luck to you.

[Mom37]

Kimmy

I don't know that I can give any real advice, but I wanted you to know that I am here for you and know that you are going to get alot of great support on this forum as I have in the few years I have posted on this forum. My daughter wore a brace and has had surgery as well. She didn't wear a brace after. She did amazingly well and went to school after 3 1/2 weeks with restrictions. She is very careful, but did get full clearance at her 6 months to do anything we allow. Her doctor and nurses encouraged her to do more physically active things even earlier than 6 months. I think around 3 months or so she was given clearance to swim laps and we were cautious, but she did really well. She has been swimming again since December along with the stationary bike, treadmill, and elliptical machines. I do somewhat understand having a child on the autism spectrum myself, how much more difficult it must be for you. My child has PDD-NOS which is different, but she does have some autistic mannerisms. I have said I couldn't imagine her going through this. Hang in there. You are there for her, and that is what she needs. If you haven't I would ask the doctor if there is anyone with autism they have treated with scoliosis and surgery and their advice, or if they have any peer support. I was called for peer support for another parent who has a daughter getting surgery, and she could ask questions by phone to me, and we talked and I recommended the forum too. You are probably already aware, but just in case there is also an autism forum where you could see if anyone there has gone through scoliosis surgery or scoliosis bracing. The local chapters for autism may provide help too. It is so tough. Kudos for you for trying to find out more to help her. I wish you the very best and feel free to private message me too if you want, and if you want my email or phone number just to talk private message me. If you need the forum for autism I will look it up for you. Take care and hope you get any advice that may help you.

[mariaf]

Elaine,

I agree with what everyone else has said. You are doing a GREAT job so please don't beat yourself up over anything.

And perhaps try to focus more on the positives (the great correction, the fact that Kimmy is NOT experiencing much pain - all blessings for a very special girl).

Please keep us posted and know we are all here for you.

Hugs,

[Carmell]

Hugs to you - You are doing a great job. I wonder if she should try sleeping in the brace too. I know that sounds OVERWHELMING emotionally, but if she can be comfortable in the brace 24/7, it will help protect her. If she sleeps in it, it won't seem like a punishment to her. It just something that has to happen. Especially during this critical healing time for that fusion area. I'd ask the doc for his opinion, reminding him about her lack of reasoning and compliance with the post-op instructions. Hopefully someone can help. Please take care of yourself too. Easier said than done. I know.

[Aussiemum]

Hi Elaine,

Pam was filling us in on Kimmy's progress whilst in hosital, I'm so glad for you both that at least you can put the surgery anxiety behind you.

Kimmy likes Princesses?? Can you get some other type dress up clothes and play dress up's every morning. Like, Snow white, who wore a bodice?? (The brace being the bodice) Maybe a Tiara and cloak. Crazy suggestion but gee it's a difficult one Elaine because even the kids without Kimmy's problems can be difficult to get them to wear it. I can attest to that.

Maybe you could put it on loosely first thing in the morning and then just gradually tighten it??

Show her pictures on the net of other kids wearing theirs and tell her how special she is to be in the "club".

Oh well, dumb suggestions maybe, but if everyone throws some ideas around maybe we can come up with something!!!

Cyber hugs
Del
xx

[CurvySAT05]

Susie was talking about drawing on the brace, so I just wanted to say that dry erase markers work the best (come off easiest). Many of the Spinekids have tried it in the past, lol.
I hope that Kimmy is able to adjust to her brace soon and that you dont face too many more trubles as a result.

[Pooka1]

Hi Elaine,

That's great news about the low pain levels.

I don't know what to say about the brace beyond the good suggestions already advanced.

Good luck and best regards,
sharon

[ca-native]

Thank You!

Wow - I've really enjoyed reading about all of the creativity everyone has shared! I'm happy to report that Kim wore her brace all day yesterday and even took a two hour nap in it. This morning when I put it on she didn't cry, I couldn't believe it. I'll give an update after tomorrow's two week post-op visit, I really think the brace needs some adjustment in the bust area but the waist and hips areas seem to fit well.

Thank you again for all of your wonderful support and suggestions.

[ca-native]

Two Weeks Post-Op Visit

Hello Everyone,

Two weeks ago today Kim had her surgery; it feels wonderful to have her operation over and be on the "other side" to recovery. It's true what most people have said on this forum: the time leading up to the surgery is the worst.

We saw her surgeon in San Diego yesterday for her two week post-op and she handled the long ride well (three hour round trip). Her incision looks good and she was cleared to take a shower (no soaking in baths yet). We also had her brace adjusted yesterday while we were in San Diego and I feel much better now about how it should be fitting. She no longer protests when it is being put on and she wears it all day without complaint. Yeah!

I have been slowly reducing the dosage of her prescription pain medication and she is now down to a quarter pill every 4-6 hours with a Tylenol. Today I will be switching Kim over to two Tylenol only every 4-6 hours, if it appears to cover her pain. She seems to have an incredibly high pain tolerance, one of the few upsides to her autism (hey, you have to take the benefits to that diagnosis when you can).

Her school is out next week due to spring break and when it resumes on April 14th, I think I'll start taking her for 1-2 hours visits to see how she does. Everyday we have been going on a walk in the neighborhood and little outings: we go to a tiny "farm" on the nearby fairgrounds to visit the cows, sheep, etc. (she loves that place!) or to a store.

I still have to watch her constantly and am very relieved that she is wearing a brace to make sure her back is protected as much as possible. Yesterday the doctor assured me that she would have to do something very significant to cause any type of major damage to the repair he performed (think falling down stairs) but he does prefer that a reasonable amount of caution be taken, hence the brace for Kim.

Another thing that has been posted on this forum and is absolutely true: everyone is so completely different in their recovery. It has really helped me to be flexible and use the attitude "take it as it goes".

Thank you again my cyber buddies,

[Pooka1]

Elaine,

That sounds like SUPER progress on all fronts.

I like the strategy about how you are tapering the pain meds. I'm trying to collect advice on this.

The daily outings sound so nice... I wish I could come along to the "farm" especially.

Savannah seems to like to get out every day. Today it was the pet store and a walk in the neighborhood.

You sound like a great Mommy, BTW.

Best regards,
sharon

[Mom37]

She seems to have an incredibly high pain tolerance, one of the few upsides to her autism (hey, you have to take the benefits to that diagnosis when you can).

I still have to watch her constantly and am very relieved that she is wearing a brace to make sure her back is protected as much as possible. Yesterday the doctor assured me that she would have to do something very significant to cause any type of major damage to the repair he performed (think falling down stairs) but he does prefer that a reasonable amount of caution be taken, hence the brace for Kim.

Another thing that has been posted on this forum and is absolutely true: everyone is so completely different in their recovery. It has really helped me to be flexible and use the attitude "take it as it goes".

Thank you again my cyber buddies,

Great glad to hear the pain is getting better and understand how high pain tolerance can be a blessing in this case with my younger daughter!

[ElleBelleCurvz]

Yes, see you shouldn't have beat yourself up about htis The positives are the best things to look at and she sounds like she's doing great. Brace's usually are a pain for the first 2 weeks to a month anyway, so she's really adjusting well BEst of luck to continue on your road to recovery!

Oh and one quick question, what exactly are the little circular metal things in the pre op xray and the random nail in the post op? Lol, I haven't read your other posts so forgive me if It's explainable elsewhere. But that just had me wondering...


-Danielle