Hey WNCmom!

[WNCmom]

The funny (odd) thing, Pam, is that Sidney had nothing, not even water, post-op until he passed gas (he insisted he did, and we had to take his word for it--we could definitely hear bowel sounds), and he still has this issue. So, it must be just an individual reaction to anesthesia and other meds. I'm hoping that when he finally does break loose, it won't be traumatic, but maybe that's too much to hope for.

Okay--I'll try not to talk about this again. Enough is enough!

Mary Ellen

[malka22]

Congrats on the wonderful progress that Sidney has made. Welcome home. Based on all you said, it's clear that he is definitely the 'POSTER CHILD' for spinal fusion surgery! I'm not saying that it's a race, but, he surely has broken all records, in my book. Way to go, Sidney & mom!!! I'm so happy for all of you.

Happy Thanksgiving & may he continue to have a smooth & speedy recovery!

[WNCmom]

Sidney at 2 weeks post-op

Hello everyone--

Sidney is doing fine at two weeks post-op. He cleared the BM hurdle a few days ago and doesn't seem to be in any pain, although he still holds himself very gingerly when he walks. We have started to walk to the high point of our driveway, a moderate uphill, several times a day--it's less than 100 yards one way.

I have noticed two things: that when he walks, he still holds himself in the old position with one shoulder higher than the other. When asked to, he can lower one shoulder and he looks straighter. This is worrisome. I have read that posture often changes for the better as the muscles settle into thier new positions, and I hope this will be true for him.

The other is that he is emotionally fragile. He has been doing so well physically and was so strong throughout the surgery and immediate recovery that I think we forget that his 13-year-old spirit is still processing all that has happened. In the evenings when he is most tired, he has several times been in tears. He also has lost a lot of weight. Very thin to begin with, he is downright gaunt now. He seems to be getting his appetite back, but eats small meals about 6 times a day, because he says he doesn't have enough "room" for the portion sizes he would have eaten before surgery. I also think his body is burning calories so quickly trying to heal itself that his blood sugar can dip pretty quickly without warning.

He's keeping busy reading, watching DVDs, occasionally using the computer, and napping--and eating, of course.

Thanks for being out there--just had to report on his progress to someone who would understand. Hope you all are having a happy holiday.

Mary Ellen

[Pooka1]

Mary Ellen,

In re the old posture, Savannah had the same issue and it upset her a lot. I searched for testimonials and found some that said it would need a few weeks to settle into the new posture. She was also very upset that the area around her right shoulder blade which was hurting prior to surgery was still hurting a few weeks post op. I'm sure she was wondering if it would ever go away at that point.

At the six week check up, the surgeon assured her that her posture would improve and that the pain was muscular and would go away. He was right on both counts.

In re the emotions, as I just mentioned, Savannah had some difficulty gathering herself over those issues and others in the immediate post op period. She was emotionally fragile I would say. Sidney and Savannah are old enough to know that this was no cake walk. I was glad she was showing some emotion because she had a pretty flat affect in the run-up to surgery. She still doesn't like talking too much about the surgery and that's fine. I'm sure she is still processing it.

She mentioned today that needs to somehow stop feeling guilty about bending/lifting/twisting now that she is off restrictions. At least she was trying to respect the restrictions. It's a hard road.

Things will get better and better and get back to normal or close enough.

Best regards,
sharon

[JenniferG]

Jeepers, I feel like crying for him. It's such a huge thing for anyone to go through, let alone a child. I am yet to experience it but I feel sure there will be plenty of tears ahead.

Sidney has done so, so well! Even so, it must be overwhelming. A man I met elsewhere on the net who's been through this twice, said he suffered from depression for six months after each surgery. I realise everyone's different, but perhaps this is something that needs to be watched for? Though I suspect it's more to do with being overhwelmed with the whole shebang! It'll be interesting to read what others who've been through it, say about this.

I'm sure someone with experience can help you with the posture question.

[WNCmom]

Sharon--

It is a huge relief to read your response. I had been thinking and worrying about the posture issue so much over the past few days that I had a bad dream about it last night! It didn't help to see his dismay when he looked in the mirror before getting into the shower the other night. I, too, remember reading it takes some time for the body to adjust, but it's really nice hearing it from you, who have such recent experience. Thanks.

JenniferG--

Although I have read some mentions of it, mostly by adults, I think the emotional aftermath side of surgery for kids is something that perhaps could be talked about more--just the fact that it is part of recovery?

Mary Ellen

[Singer]

Mary Ellen,

The emotional side of surgery was a huge surprise for me. I cried more in the 6 months following surgery than I had in 20 years, and I'm a reasonably level-headed middle-aged adult -- I'm sure for a teen-ager it's doubly daunting. Physically, I believe the lasting effects of anesthesia and drugs have a lot to do with it. But when you look at the intensity of this surgery, the anticipation of it and just muscling through it, I think it's only natural that some of us have an emotional reaction when it's all over and we can "let down" a bit.

As far as the posture issue goes, remember that a lot of muscles have been cut and while they're knitting, you hold yourself gingerly and awkwardly for a while. I know it took me almost a year for my body to relax into its new shape. I'm sure it won't take Sidney nearly as long. He's doing great!

Best wishes.

[Carmell]

Hugs to you, Mary Ellen,

I agree with everyone else. The emotional roller coaster ride post-op is a tough one. All the reasons mentioned above, plus who knows how many more. He's just starting his teenage years - that alone is reason enough to be patient through the emotional roller coasters. Don't anyone try to tell me teenage boys don't have emotional highs and lows - it's not just the girls who get that. Braydon is in-tune with his body enough to recognize this. A few times he's told me that he just needs to cry and doesn't know why. Then he'll say he knows why - being a teenager sucks (pardon my/his language). Add the HUGE emotional and physical trauma of back surgery and it's a wonder ANYONE is sane after this surgery. If he gets worse, it may not hurt to talk to the family doc (for starters) and maybe even a counselor who knows teenagers and kids with medical issues. Most Children's Hospitals have access to these kinds of counselors. For as many surgeries as Braydon has had in 13 years (30 and counting) he's doing quite well. But, he's also benefited greatly from talking with a counselor twice. Twice has been enough (so far) to help him know that anxiety is part of his life. He has learned techniques to deal with pre-surgery anxiety. This isn't the right answer for everyone, but it's somethings else to keep in the back of your mind while you watch him and help him.

Keep up the good work.

[mariaf]

More hugs to you, Mary Ellen,

As tough as it is to see our kids suffer any physical pain, it can be equally difficult to see them in any sort of emotional pain. My son is only 10, and for the most part he has handled the past several years of bracing, surgery, etc. pretty well, but he HAS asked me questions on occasion and they always have the same "theme" - why? Not in a "poor me" way or anything - but genuinely wanting to know why he had back surgery, or why he had to wear a brace, and none of his friends/classmates did. Why there was/is "something wrong with my back"?

My point is Sidney is surely having similar thoughts and feels isolated from his peers in this way. What about a scoliosis support group? I know, for example, Mary Lou and her daughter run such a group in PA (way to go Mary Lou!), and Shriners in Philly also has a group called "Curvebusters". So I am hoping that you can find such a group in your area.

Just a suggestion of course :-)

Hang in there and please keep us posted.

And remember "this too shall pass" (helps me sometimes!)

More Hugs,

[WNCmom]

Thanks, all of you, for your kind responses.

Actually, I think Sidney is doing okay. He seems to be holding his own and is in generally good spirits. He's never been a child who wanted to be particularly physically close, but he is actually asking for hugs a few times a day, taking care of himself in that way. He knows he's not ready for school yet and misses his classmates, two of whom he has seen since he arrived home. The prospect of having to wait to go back to school may be the hardest for him. And as Sharon pointed out, I think it's good that he's shed a tear or two. It makes me realize how steady he has been through this whole thing. Always good to keep the outside help option in mind, though.

Mary Ellen

[Pooka1]

I, too, was greatly worried about the posture and the pain. I thought it would be a very raw deal indeed if she had to go through surgery and come out with similar problems on the other end.

IIRC, the shoulders evened out before the six week appointment but the pain at the shoulder blade was still present at that point.

Most of the battle is just acknowledging it's an emotional roller coaster for months and for everyone. And doing your damnedest to honestly reassure your kid even when you don't know what's ahead yourself. For us, it was mostly just listening coupled with looking up testimonials when relevant.

You just have to trust and hope that it gets better. And if it doesn't, you have it redone. Matter of fact. That's how I tried to approach it.

With Willow, I'm just going to tell her to talk to Savannah! Or just look at her. Just kidding.

sharon

[mariaf]

For us, it was mostly just listening coupled with looking up testimonials when relevant.

You just have to trust and hope that it gets better. And if it doesn't, you have it redone. Matter of fact. That's how I tried to approach it.

With Willow, I'm just going to tell her to talk to Savannah! Or just look at her. Just kidding.

sharon

Sharon may have been kidding, but I was about to say that sometimes all it takes to help them emotionally is to let them see somebody else who has gone through the same surgery - and see how well that person is doing 3, 6 or 12 months post-op.

That's why I mentioned a support group - because it might be helpful for any of these kids, right after surgery, to see others and how far they've come. In your case, Sharon, you would not have to go far because you have your own proof right there in Savannah :-)

In fact, right after David's stapling surgery, a mom I had been talking to (whose daughter had the same surgery about a year before and who lived right outside of Philly) dropped in with her daughter to visit David. She said she wanted me to see for myself that even though David was, at that time, still recovering, that down the road he'd be fine. He may have been too young to benefit (5 years old at the time) but it was helpful for me.

[Pooka1]

Well I was kidding in that I certainly wasn't going to just keep handing her off to Savannah and not talk about it with Willow if she wanted to talk!

But I agree that seeing her twin go through this is a good thing. Willow is mentally on board. I'm sure she doesn't realize the extent of the pain or emotions in the immediate post-op period but nor do I. But that's okay. She'll deal.

[mariaf]

Hi Sharon,

That's what I actually meant (sorry if it didn't come out sounding as I intended) - that just the mere fact that she saw her sister come through the surgery and do so well will be a big help to her, should she ever face surgery.

[WNCmom]

Sidney 3 weeks post-op

We've arrived at what I've heard is the magic three weeks. Sidney is doing well. He's walking farther, sitting up in a straight chair longer, eating more, doing some school work, putting on/taking off shoes by himself, even sitting cross-legged on his bed. He has bent forward a few times without thinking, and we're having to remind him not to. Generally speaking, he's doing more for himself each day. And eating almost constantly. Generally he is in good spirits.

He still walks gingerly in what looks like his old position, but I do think his body is beginning to relax some.

He has had a few isolated rib pains and stitches (like you can get running), and these usually come after he's taken a long walk. I think that's a good sign, because to me it signals that the muscles are being asked to move into new positions. Other than that, no pain to speak of, which seems amazing.

I think mentally he is ready to go back to school, but he knows that physically he's not ready. His blood sugar still drops quickly and he gets tired. I feel I'm finally beginning to catch up on sleep and energy myself, so I'm sure he has a way to go yet--not that I'm in any rush for him to go back!

Just had to give a little update.

Mary Ellen