Update On Danielle

[pmsmom]

Hooray that Tahlia is home! \ 0 / May she continue to have a great recovery!

Marian

[gillespie]

Hi Lisa and Mary Ellen
No Danielle is not wearing a brace either. She is doing very well each day gets a little better. She is also so feeling weird pains which is just that the nerves and muscles mending. She is doing better everyday, she is able to sit up herself now and is in much better spirits. I believe the nausea was from the morphine because as soon as they stopped so did her nausea she is now on oxycodone and tylenolol 3s. She did have a bit of a break down today as she misses her friends and social life. She did have bm today after enema (she would kill me for telling you all this). I don't know why they dont just do them it was instant after suffering and stressing for a week and a half. Lisa I know all to well how arrogant and rude some medical professionals can be it is frustrating and they do have to be reminded sometimes that they are only human. Danielles surgeon is owesome in everyway but his resident was a different story to busy to listen or care. I realized yesterday that he was about a day short for pain meds for her before her follow up called her surgeon and got repeats thank god or we would have been at the er tonight for sure. The nurses at the childrens hospital were all so kind, every shift change we would worry we were going to get a bad one but that did not happen I can not say enough about the care she received. We go tomorrow for a follow up and have the dressing removed. Lisa I can't imagine what you have gone through our experience was a good one and was still hell I feel for you but now we are on the other side and isn't it wonderful. One thing that does have me a little concerned is that her one shoulder seems to be dropped a bit will ask about that tomorrow. Take care and bye for now.

[laurieg6]

Our orthotist was never friendly either. He was always unhappy and negative about the implications of the scoliosis and the brace.

[Kitty]

HiCatherine,
Nice to hear from you again. I too worried about the shift changes and getting a "bad" one (LOL!!), but like you, they were all so wonderful. We had the opposite experience with our doctors - the surgeon was very short and sharp, whilst his registrars or residents (or whatever they're called ) were pleasant and managed a smile. Whilst i don't resent our surgeon is cold mannerisms, as he is highly respected and good at what he does, it certainly did not make consulting with him easy. Don't worry, Tahlia had a supp also and it helped enormously and I think us parents need to talk about our experiences.

My journey has been scary and so has yours and others. I will be honest, though, and say that when her her lung collapsed, i began to think the worst and was SOO scared, but lung collapse or not, this is a huge operation that will have all parents fearing the worst. So I dont think that my experience has been any harder than anyone else's.

Tahlia still has half her dressings on. I have to make an appt with the GP clinic next week to have it removed. They told me the tapes curl over and then to just trim them back, but have them removed soon. I don't know why they just couldn't take them off themselves.

Laurie, thanks for that. It's nice to know we're not the only ones

Cheers all,
Lisa

[gillespie]

We went for follow up today. She is completely straight 100% correction which from what I gather is rare. Her dressing was removed and looks good. We also were asked to talked to a family just beginning this journey I wish we would have had that when we were first told. We also were waiting for xrays and there were two 10 year olds that are facing surgery that I think felt better after seeing and talking to Danielle.

[Carmell]

Catherine,

I'm very happy to hear Danielle had a great post-op appointment! Many hugs and wishes for a continued smooth recovery... She's doing great.

[Kitty]

That's great news Catherine. I do envy you though. I don't know how much correction Tahlia has as we'll have to wait and see. However, from looking at her shoulder blades, one is still lower than the other and she still has a hump on her right side. It is noticeably lower than previously, I will admit that, but I am very saddened that it is not straight. The surgeon did tell us that he could not get a completely straight correction so we knew that going into it, but i guess you just hope. The x-rays actually look better than her actual back. And with the brace on, I have noticed that she is pretty much back to where she was when they were bracing her about 4 years ago to halt the progression. I'd say she's around 40 degrees, but that's just my untrained judgement. You can still notice the unevenness in her back and her clothes don't sit as well and I look at her and think she's gone through all of this (surgery and hospitalisation) and it still isn't straight. I haven't told the surgeon this (not that I think he'd care) as I don't want to be ungrateful, because i know there is an improvement and Tahlia feels better and is happier and it (hopefully) will halt the progression. So I am grateful for that, but when it is your child, how can you not want a completely straight spine.

Sorry. I just needed to get that out.

Glad to hear Danielle's getting better.

Lisa

[Carmell]

Lisa,

I'm glad Tahlia is home and recovering there. I hope her recovery moves smooth and speedy now that she can rest at home.

I understand your comments about this being YOUR child and not seeing the benefits you had hoped for. I know that may weigh on you, emotionally. Try not to dwell on this, tho. Is she breathing better? That's the #1 reason why she had the surgery (internal organs needed better space to function). If this has improved, then her surgery was not in vain. I promise. She is still so soon out of surgery that you can't make too many long term judgments yet. Many patients need time to get used to their new bodies. Over the next weeks/months, hopefully she'll "settle in" to her body's new position and have better posture and better presence. However, if she doesn't, she still needs your praise and support for doing so well during and after the surgery. She needs all the self-confidence she can get. Having an 80+ degree curve is huge. Realistically, you can't expect perfection. Tahlia is perfect. The spine/curve may not be. (I know you know what I mean... not lecturing, I promise.)

I try not to think about this with Braydon. His back can't ever be normal. It wasn't "normal" to start with. Hopefully he stays healthy and strong and continues to be as balanced as possible, with an equally balanced emotional state of mind. That's what I continue to hope for.

My best you (still!) and Tahlia for a continued smooth recovery.

[Kitty]

Hi Carmell,

Tahlia is very happy with the surgery and outcome and mentioned to me that she is no longer wheezing and breathing better, so yes that is a great outcome. Believe me, I have not lost sight of Tahlia's emotional well being here and have consistently advised her that I am very happy and that her back looks so much flatter than before and is generally better overall. She is not aware of my feelings reflected in the comments above. I am satisfied, i just wish her curve was straighter and I do feel some envy when I read (or see) about others' straighter spines post-op.

It's strange though, prior to surgery, I had fully accepted Tahlia's back for all its' curves and twists. Tahlia was just Tahlia and as you say, she was perfect and aesthetically, her back did not bother me (obviously the lung function and heart-related probelms were an issue), but i could accept it then, but am having greater difficulty now. I sense that's because perhaps my expectations following this surgery were greater than the results delivered.

Nevertheless, I will remind myself of the benefits and the potential consequences if she didn't have the surgery. I know that it would have only gotten worse and her lung function would have deteriorated.

Lisa

[laurieg6]

I know what you mean Lisa. My son's curves are still in the low 30's and his back isn't "perfect" - but of course he, himself is, Carmell.

He still doesn't have perfect posture, one shoulder remains higher than the other and, unless reminded to do otherwise, he tends to lean a little forward and on one hip. However, he feels great, is so relieved and proud to be such a survivor, he's regaining his strength and he can do almost anything. It just still bothers me that with all he's been through, he still doesn't look as straight as I thought he would.

Hang in there though. Your daughter's surgery was so recent that anything is possible with regard to her posture. I'm sure her shoulders will even out somewhat, if not fully and she's still probably swollen from the surgery. When the swelling goes down, her rib hump will decrease too.

[WNCmom]

Lisa--

I appreciate your being so up front with your feelings of disappointment. Sidney's back doesn't look straight, either--at least not yet. With all my gratitude, I am also worried that it won't "settle" and ultimately look straighter as Carmell is describing, even though a number of people have said there's a good chance it will. I'm still hoping for that, but at the same time worried it won't happen for him.

Sidney is only 13 and before surgery was less body concious than most his age. I just want HIM to be okay with how he looks, however it turns out. He can see he is not quite straight right now(he's just mentioned it once). I guess all we can do is wait and hope and accept, and support and love our children.

Just want you to know I'm understanding you...

Mary Ellen

[Pooka1]

Catherine, very good news on the correction.

Lisa, I'll have to try to find that article again but the bottom line was that there was no difference in future back pain (and IIRC other back issues) between folks who were corrected to near straightness and those who were left with a moderate curve.

If that proves to be universally true over large populations then the larger corrections are "grandstanding." And I say that as someone whose kid was corrected down to ~5*. I won't see our surgeon until March 2009 but will try to nail this down.

Any stabilization of a curve is AMAZING in my book. Surgical fusion is the only way to stabilize a spine as far as I know. We are so lucky this treatment even exists.

sharon

[Kitty]

Thank You

Hi Mary Ellen and Laurie - thank you both for your comments. It is good to know I am not the only one who feels that way and you can both relate to how I'm feeling. I do hope that there will be continued correction with the brace. And I hope too, Mary Ellen, that Sidney's curve will straighten as well. Tahlia has looked in the mirror a couple of times and says she can actually see her back now, which is good because before she couldn't because her shoulder blade was sticking right out. I guess we just have to continue to remind them of the benefits (both aesthetically and medically) of having the surgery, regardless of how worried we continue to be.

Laurie, when did your son have his surgery?

Sharon, i'd be happy to read the article if you can find it?

Thanks,
Lisa

[pmsmom]

Catherine and Mary Ellen, I'm happy to hear that Danielle and Sidney are doing so well!

Lisa, I am so happy for you that Tahlia is doing so well, too! She has had so many other medical issues--God bless her for what she has had to go through!

To all moms who've posted, if nothing else, I'm sure you are so proud of your children and the strength they (and you) have had through their scoliosis journeys.

Please tell them for me that I am drawing hope from all of your stories.

Marian

[WNCmom]

Lisa--

How long does Tahlia need to wear her brace?

M.E.