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Pooka1
11-11-2008, 03:42 PM
Dear Mary Ellen,

I saw you logged in.

How is it going?

Best regards,

sharon

WNCmom
11-11-2008, 04:35 PM
Sharon--

I had just written a post and chickened out deleted it and logged off, and then I saw your post to me, so I have to respond.

We are in Philly and just finished our preop with Dr. Cahill at Shriners. Sidney is cleared for surgery, with the exception of the results of an MRI that was done today, which we still do not have. I am very sad to say that the x-rays showed dramatic progression of his T and L curves since he was evaluated in June (T57). Now they are about T75 and L50. There is some concern that the lumbar is actually more structural than originally thought. They had planned to go from T1 or T2 to L1 or 2; now they plan to go to L3 or 4--most likely 4. They were taken by surprise; there was no indication the curve(s) would progress this quickly. We actually had an x-ray done in Atlanta in August; it showed no progression.

I am in shock and feeling very bad. Sidney will lose more flexibility than we expected and his hoped-for correction will be much less than we expected; his back will never be even close to straight (I know that cosmetics is not an issue, really, but I was hoping for something in the 20s, anyway). I am trying 1) to be grateful that it's possible for the curve to be stopped, 2) not to feel guilty, 3) to believe there is a reason for why this happened. Also, I know I need to focus on supporting Sidney through surgery and not on the negatives.

Dr. Cahill said that it is possible that if the surgery had been done earlier, the lumbar might have continued to progress, necessitating a second surgery. I don't know if he is right; I don't think he was just trying to make me feel better. We will never know.

We still are waiting for the results of the MRI to be sure there is nothing there that shows an underlying cause (two previous MRIs showed no change in a small syrinx; the last was done over a year ago). Also, Sidney has no kyphosis; for the first time I heard Dr. Cahill say it would be a challenge for him to build that back into his spine.

I'm sorry I'm not in a place to read other posts and see how others are doing; I just need time to adjust to this change for the worse.

Sharon, I did read the first bit of Savannah's check-up report. Glad to hear she's doing well. Any encouraging words from parents whose children have been fused that low or adults who have been fused that low would be welcome.

Thanks for being there. Sidney will be admitted tomorrow.

Mary Ellen

discombobulated
11-11-2008, 06:53 PM
Hello, Mary Ellen.

I'm so sorry to hear the news wasn't what you'd hoped. I'm not a parent of a child with scoli, but I had my 2 fusions when I was younger (12 & 14 yrs). I was one of the ones who had to have a 2nd surgery to correct a lumbar curve that progressed very rapidly after my thoracic surgery, even though they thought it was just a minor compensatory curve. I know fusion is a big surgery, but I would have preferred to get it over in the one surgery.

And I can only speak for myself, but I didn't find the extension fusion limited my movement much (the full thing runs from T3 right down to the lowest vertebra & anchors into my pelvis). Flexibility is affected, for sure - but that's definitely not to say that my everyday *movement* is much affected. Obviously there would be problems for say, a gymnast, but I doubt that most other sports would be much affected (once restrictions are lifted, of course).

I may be facing a not-so-great correction with my next surgery, either - but there will be at least some improvement, and the curve/rotation will not progress any further....and for me, that's an important thing, too...though, of course, it's very easy to feel down about the prospect of less-than-perfect correction. I hope that for both of us, things come out better than we could ever dare to hope :)

Now I'm just really rambling (sorry!), but I wanted to add one other thing, from the perspective of being the kid/teen going through a big surgery like this. Your son doesn't want or need for you to feel guilty about this, and there's no reason for you to (though I do understand that it's the first natural reaction!). The thing that's important is that his family - his Mum - will be there to help him through the surgery, cheering him on. And when it comes to it, I just know that that's what you and your family will be doing. Please don't forget to take care of yourself, physically and emotionally. My Mum (& to a lesser extent, my Dad & brothers) have always been with me through many surgeries...and to know that they're feeling guilty, it only makes me feel terrible that I'm putting them through this. I don't say that to make you feel worse (& I sure hope I didn't!!), but I hope that a different perspective will help you to move on from feeling so down, to concentrating on getting through this. And I have no doubt that you ALL will make it through this.

It's great news that Sidney's syrinx has stayed small; and also that it sounds like you trust your surgeon. That's a great start.

Best of luck to Sidney and your family. And remember we're all here to support you - no need to chicken out on posts again ;-)

Take care.

Pooka1
11-11-2008, 07:35 PM
Dear Mary Ellen,

I'm sorry to hear about the recent news you received.

Please don't feel guilty. There is not one single parent on this board who hasn't made every effort to help their child at very turn. You have clearly done a great job. You were blindsided and so were the surgeons. There can be no blame in your situation.

I don't know what your doctor told you but maybe you shouldn't give up hope on how Sidney's back will look. Willow has at least a 40* curve at this point and it is barely noticeable (except when she bends over). Also, Savannah was quite obviously cranked around and not expected to have the amount of rotation correction she achieved. So there is hope I think.

In re a reason why this is happening to your beautiful son, I don't think in those terms. But as I said in the other thread, the scoliosis alerted me to the possibility that my girls might develop Marfan's at some/any point. That alone and all by itself is a huge benefit from this scoliosis business in my opinion, irrespective of whatever correction my girls will get. It is not out to lunch to suggest the scoliosis may have saved their lives.

In re long-term on a long fusion, I hope other parents weigh in. But I want to say three things...

1. folks with shorter fusions not extending far into the lumbar are back in the general population but that does not mean they will have no back problems. A lot of folks have back problems. Maybe most. I'm ostensibly in the general population and I have two lumbar vertebrae that are fused (withOUT benefit of morphine... 0 - 10 - 0 on the pain scale for a few months until the disc dissolved.) I would spontaneously yell out in meetings when the nerve was being crushed. I have no known back pathology otherwise and yet my lower back is getting worse in terms of ability to stand for any length of time without pain/stiffness.

2. It seems to me folks with most of the lumbar fused successfully might experience LESS total back pain than the general population over their life because they can't develop disc disease and crushed discs and naturally fused vertebrae and such. That's how I would look at it.

3. Folks with long fusions will likely never need another operation to extend the fusion. If I knew there was a very high chance that Savannah would need to have her fusion extended in 10 or 20 years let's say when she is an adult and working a career, and was given the choice of having it fused in the original operation I would ask her but tell her the latter is not out to lunch as an option in my opinion. The idea of a second operation in that short time period is mind-boggling. If Dr. Cahill is correct, Sidney will only have the one operation ever.

Mary Ellen, I have great confidence in you. This will be okay. You are in expert hands which hold the state of the art. And that art is amazing. :)

I'll be thinking about you.

Best regards,
sharon

WNCmom
11-11-2008, 09:17 PM
Sharon & Dis:

Your kind and wise words are incredibly meaningful, especially because you both have experience with this subject. A few details: Cahill is predicting a correction of ~45 degrees. I remember when Sidney's curve was at 45. He actually has always worn his curves so well that only recently have people noticed he even had one. I am worried about the lack of kyphosis, however, and am praying Cahill will be able to build it in.

You are helping me put things into perspective. I do feel guilty, and I know I have to put that aside, because as a friend pointed out to me, I have much more important things to do right now.

Sidney's attitude is actually great. He sees no sense in looking back; he is already giving my husband and me advice on what to do during the surgery: "It's okay to sleep. Reading is good. And DON'T watch the clock." Wise advice. I hope I can be there for him as he is for me right now!

Thanks for the votes of confidence.

Mary Ellen

Susie*Bee
11-11-2008, 09:42 PM
Mary Ellen-- just want to send my best... I'll be praying for Sidney-- and for you. It sounds like he has a wonderful outlook on this, and some wise advice for his parents. ;) Big hugs, Susie

mariaf
11-11-2008, 10:06 PM
Hi Mary Ellen,

I just wanted to say I was thinking of you. I'm sorry you have the added stress of these new developments. Hopefully your son's spine will be flexible enough that they can still get a pretty good correction. You know he's in very capable hands. My thoughts will be with you in the coming days and weeks and I'll be waiting to hear some good news from you.

txmarinemom
11-11-2008, 11:33 PM
WNCMom,

I'm also amazed by your strength in the face of tough decisions. Like disc, I'll say I'm not the parent - and I hate that you're feeling any guilt (and hope you never do) over your choices. You did the best you could - and continue to do so.

I'm sorry Sidney *may* not achieve the correction for which you hoped, but like Maria said, you never know. You and Sidney are in the best of hands ... and Dr. Cahill will do his best for your kiddo in the short and long term. You might be surprised ... and I'll keep crossing my fingers you will be!

There are many thinking of y'all as you walk this trail. You may feel alone, but as long as you need us, you'll never be.

Best regards,
Pam

txmarinemom
11-11-2008, 11:40 PM
... I am worried about the lack of kyphosis, however, and am praying Cahill will be able to build it in. ...

Mary Ellen,

I wanted to show you my *absolute* lack of kyphosis - and what Hanson was able to sculpt. See the attached pics ... it IS possible!

Regards,
Pam

WNCmom
11-12-2008, 07:43 AM
Thanks Pam, & Maria. You too, Susie. I hope you are right, and I thank you all for your thoughts and prayers.

I need to ask Dr. Cahill today, but I think his concern is that with straightening such a large curve, he may have trouble building in kyphosis. He did say the rotation hadn't increased all thatmuch.I don't think remember anyone saying it was outrageous to begin with--but definitely there, in any case.

My challenge is staying positive. Sidney has to get through the surgery okay, then we'll worry about the "details" of kyphosis and fusion level. I'm saying this to myself as much as to you!!! You all are helping.

M.E.

pmsmom
11-12-2008, 08:14 AM
Dear Mary Ellen,

You all are in my thoughts and prayers.

Please do not beat yourself up--I agree with what several others have posted--I think most parents do because we love our children so much and would do anything not to have them go through any pain. We would gladly take that pain upon ourselves rather than see our children have it.

I would say to be thankful that you are going ahead with the surgery. Sidney is in good hands.

Take care of yourself as well!

Please check in when you can!

Marian

scoliboymom
11-12-2008, 09:18 AM
Hi Mary Ellen,

Just wanted to say that Patrick had a lack of kyphosis to the point of having lordosis in his thoracic spine. You can search lordoscoliosis to find my post with x-ray pictures. It was not expected to be corrected with surgery and wasn't. At one and a half years post-op he seems to have no problems with it. Patrick's curve was over 80 with large rotation at time of his surgery and perhaps this might have a bearing on ability for the surgeon to create a kyphosis. Or it's a boy thing?
We'll be thinking of you.
Ramona

WNCmom
11-12-2008, 10:00 AM
Ramona--

I was hoping you would post. I thought I remembered your son having a large curve. Thanks for checking in. Sidney has reduced lung function, so I think that's why Cahill is hoping to be able to build in some kyphosis. I looked up your son's correction, and it was encouraging to see it was 20 degrees. I'm hopeful, but don't want to set myself up for disappointment.

I hope flowerpower will check in; I noticed her son's fusion was down to L4. Maybe she can give me some reassurance.....

We will just have to see how it goes and hope for the best. That's all there is to do. I'm just hoping to stay calm. We still do not have the results of the MRI. Off to the hospital in about an hour.

Thanks for everything...you all are the greatest.

Mary Ellen

jillw
11-12-2008, 12:44 PM
MaryEllen, I've been thinking of you and Sidney this week and can only imagine how it felt to get that news. I'm sorry to hear it, but am glad to hear from the posts of others who have experience with similar circumstances that things turned out OK. The next few days will probably be long ones for you, but soon the surgery will behind you (yes the road to recovery will still be there, but the worse will be over) Hang in there! I'm praying for great results!

sccrm08
11-12-2008, 07:39 PM
Mary Ellen,

I will be praying for you and Sidney. We will be thinking of you during the surgery and hoping for a great correction. My Dr. was very conservative with what he thought he could get for a correction and He got me down to less than 10 degrees. Best of luck, I will be praying for the best.

WNCmom
11-13-2008, 10:23 AM
Sidney is now in surgery. We last saw him at 8 am and the actual surgery began an hour ago. I feel like a basket case--very rattled. He kept his sense of humor both before and after they gave him sedation in the OR holding area. A strong and brave kid.

Thanks for all your thoughts and prayers--we need them. I'll update you as soon as I can. We were told it would be late this afternoon before we would see him.

Mary Ellen

pmsmom
11-13-2008, 10:57 AM
My dd and I said a prayer for you all this morning. You will continue to be in our thoughts all day.

Please keep us posted!

Marian

scoliboymom
11-13-2008, 11:14 AM
His strength and positive attitude will get you and your family through this. Please know that I am thinking of you today.

Ramona

jillw
11-13-2008, 12:12 PM
MaryEllen, Praying and hoping for Sidney.....

Sherie
11-13-2008, 12:56 PM
Best wishes Mary Ellen, your family will be in my thoughts today. Stay strong!

laurieg6
11-13-2008, 02:11 PM
Hi Mary Ellen,

I wish your son all the best. You are now in surgery still, I believe, and this is the hardest part. You are almost on "the other side" and it will only get better. After the first few days (a week or two for some) post-op, your son will start to be feeling and doing things like his old self.

My son had a long lumbar fusion (to L3) with only about a 50% correction because of his hemivertebra. He looks and feels so much better now. He was never really flexible and isn't flexible now either so I can't speak to that. But his outlook on life is so much happier now that the surgery is over. We all just hope and pray that a second surgery won't ever be necessary.

Hang in there and try to stay calm. What helped me during the surgery and the whole hospital stay was keeping a notebook and writing down everything that happened - Dr's. names, names, times and doses of meds, anything. Alexander really likes to read about it still today.

flowerpower
11-13-2008, 02:46 PM
Hi Mary Ellen,

I've not been on much lately, but just checked in and saw your thread. So sorry surgery became a necessity but my thoughts and prayers are with you and Sidney for a successful, uncomplicated surgery and recovery. Our sons situations are similar, Joe's curves progressed so aggressively and rapidly he also had to have surgery much sooner than planned. I know it's hard not to feel guilty, but realize you've done everything you could as a parent, surgery is something we all want to avoid or put off as long as possible and this spine condition can be so unpredictable it still surprises even the doctors. I know Joe's dr. was surprised by how quickly Joe progressed.

With Joe, while his T curve was corrected to 17 deg., the rotation had progressed so much that he had and still has, quite a bit of a rib hump. That may not be the case with Sidney though, if the dr. said his rotation has not increased. So a correction of 45 can still possibly be something you can be satisfied with if there's not much asymmetry to begin with. It may be hard to tell at first. It may take a while for the body to "settle" into position. I can't help as far as kyphosis, that was never an issue for Joe. As far as flexibility and mobility, Joe does fine. He bends at the waist or knees to pick something up off the ground. He has no trouble looking over his shoulder when driving a car. He can twist his body, just not as far (hey, that rhymes, anyone want to brainstorm for a scoli limerick:D:p) ok, back on topic; Joe is as active as he "wants" to be, he has no limitations except for contact and extreme sports (which wasn't on his agenda anyway). He may get some soreness from a long day on his feet (he's in marching band), sleeping on his stomach, etc. He's gone to Disneyland and rode everything he wanted except for maybe like Space Mountain (too dark, unpredictable and jarring).
He had even taken a really hard spill this past summer (collided with brother who ended up in hosp. with concussion and skull fracture:eek:) and was ok even though his back slammed up against the curb.

Hope this was helpful. If you have any other questions, feel free to ask. Please keep us posted when you can.

Take care,
Renee

Pooka1
11-13-2008, 04:14 PM
Thinking of Sidney.

Take care,
sharon

Susie*Bee
11-13-2008, 05:28 PM
Sending hugs and prayers your way. --Susie

jillw
11-13-2008, 05:32 PM
MaryEllen, hopefully you are in with Sidney right now after hearing from the doctors about a successful surgery. Hopefully you are all on "the other side" now and can focus on recovery.

Kitty
11-14-2008, 04:27 AM
Hi Mary Ellen,
Please know you are in my thoughts and I wish you and Sidney all the best. I hope you are both doing well.

Please let us know how it all went.

*HUGS*

lisa

Cheryl M
11-14-2008, 09:54 AM
My prayers go out to you. I pray for a successful and fast recovery. Please e-mail me if I can help out with any advice. I've been through this twice.

Cheryl

WNCmom
11-14-2008, 10:51 AM
Thank you all for all your wonderful words, thoughts, and prayers.

Sidney is fine. Surgery was 9 hours. He is fused T2 to L4. Dr. Cahill must be a magician; when he showed us the x-rays at about 5:30 pm, the correction looked nearly straight to my unpracticed eye. He was also able to build in kyphosis that is, in his words "just about normal." In addition to being very good at what he does, I think he's a master of understatement--very low key.

Sidney is in PICU and doing very well. Oriented, calm, complient, and using sign language until he got the breathing tube out. He even asked to have photos taken before he was extubated last night. Face swelled as to be almost unrecognizable (he could not open his eyes at first); it is much better today, but he has a ways to go.

He used the three units of blood that he, his father, and I gave, during surgery. There was mention of a possible post-op transfusion, but that is looking less and less likely. He is sitting up now and will walk today. A little bit of lung congestion today, but sitting up will help that. They are hearing a few gurgles in the intestines, and he is desparate for water, but Dr. Cahill is very strict about nothing at all until gas is passed. We know how important that is.

I'll try to send more later today. This is the first time I've been able to access the internet, although I think we may get that in the PICU today.

Thanks again for being there.

Mary Ellen

P.S. I'm sure this will be no surprise to you, but we were unable to follow Sidney's instructions while we waited. We did not sleep, I could not read, and we most decidedly DID watch the clock.

mariaf
11-14-2008, 11:07 AM
WHAT GREAT NEWS, MARY ELLEN!!!

You must be sooooo relieved and I could not be happier for you!!!!!!

flowerpower
11-14-2008, 12:02 PM
Glad to hear everything went well. Sounds like Sidney is doing amazingly well for just going through a 9 hr. surgery! Welcome to "the other side" of surgery! Keep us posted -

Renee

Pooka1
11-14-2008, 12:26 PM
Excellent result!

These surgeons are AMAZING! They are spine artists!

Best regards,
sharon

laurieg6
11-14-2008, 01:14 PM
Congratulations on a successful surgery. I'm so glad to hear that Sidney is already sitting and will stand up and walk a little today. It sounds like his correction was amazing. I am really happy for you. Even though the first few days after surgery can be stressful, esp. in the hospital, it only gets better for all of you from here on.

CarolinaGirl
11-14-2008, 02:14 PM
I'm so happy to hear about Sidney's successful surgery. I knew that Dr. Cahill would "work his magic!" I will continue to keep Sidney and you in my thoughts and prayers for a very speedy recovery.

Renee
Sam's Mom - VBS in Feb '08 with Dr. Cahill

pmsmom
11-14-2008, 02:58 PM
Glad to hear that the surgery went well!

God bless you all! (esp. Sidney!)

gillespie
11-14-2008, 03:07 PM
Mary Ellen
I am so happy hear all went well. It must be such a relief. I can not wait to post the same news 10 days to go. Hope recovery goes well and I look forward to reading your next post. God Bless !!!

jillw
11-14-2008, 04:16 PM
MaryEllen, that is Great news - the results are as good as they get! Now its time for a fast smooth recovery!

Kitty
11-14-2008, 06:10 PM
Hi Mary Ellen,
I'm very happy to hear all has gone well and you have maximum correction. I cried when i read your post, because I so desperately want to be where you are and at this stage, i feel we may not get there. We have surgery in less than 72 hours and i am SO NERVOUS.

But very very happy for you and Sidney. Well done to all of you.

Keep me posted.

Lisa

WNCmom
11-14-2008, 10:44 PM
I just realized I haven't posted since this morning, which seems ages ago. Sidney is still in the PICU. He is doing fine--he sat up in a recliner today for 5+ hours and did quite a bit of routine breathing therapy. No walking, because the sitting wiped him out. Dr. Cahill said he did more than the requirements today.

I think they are keeping him here because it was such a long surgery and they just want to keep an eye on him. They don't move anyone out of PICU after 5 pm on Friday, so he will be here over the weekend. Fine with me; as the nurse said, "he gets a private room, one-on-one care, and a great view of the ghetto." The hospital is in North Philadelphia.

Lisa, I know how hard it is to be in waiting mode. I'm not sure how I got through yesterday; I read short articles in magazines (al my attention span could handle), paced, and did a lot of writing--the story of Sidney's scoliosis, my fears, all my worries about the new larger curve. And when I ran out of that, I wrote out from memory a long Buddhist prayer I learned years ago. That took me a couple of hours. Somehow writing helped me disidentify from my fears a little and calm down. Still, it was excruciating. Sometimes I had to literally take it one breath at a time. I know you will find your own way to be there for your daughter. You will make it. Also, I desperately wanted to hope for a better correction than predicted, but was afraid to, even though I'd read it often happens. Sidney's main curve only reduced to med 50's on bending, so it was very stiff. I don't have a measurement, but I know it's a good correction. It happens, and it's not rare. I think there is hope. I pray you and the surgeons can decide on a plan you feel good about.

Although I am on the other side of surgery, it will be few more days at least before I feel on solid ground--Sidney is still heavily medicated, although so far his pain has been under control. Even now he has a low grade fever-not uncommon, I'm told, but still it concerns me.

Lisa, hang in there. I'm thinking of you; we all are.

Mary Ellen

WNCmom
11-15-2008, 06:54 PM
It was a big day today for Sidney. He's doing as expected and on schedule, but his walking is very shaky. He walked twice with lots of support: once to the PICU doors, and then again 10 steps to the toilet to try to have a bowel movement (no luck). He was up in the recliner again for about 5 hours in between. They have removed the morphine pump and PCA and he is now on oral meds. He is drinking water, juice, and eating jello. No nausea, but some stomach distention.

Last night felt very long. Although his temp today has been normal, it was just slightly elevated last night off and on. He also has had oxygen prongs in off and on. His face is still slightly swollen. One of his lungs had slight collapse yesterday but is fine today; his breating exercises have gone well.

I think Sidney may actually have a rather high tolerance for pain, but he doesn't know it (if that makes sense). For him, the thought of pain is usually worse than the reality. He is uncomfortable sitting up and isn't really motivated to walk (although the nurses aren't pushing him to do a lot because he is shaky). His back is very stiff. We haven't measured yet of course, but he has gained several inches (he was 5'8"+ tall going in; he now seems to be over 6 ft.). I can only imagine how much his muscles have been stretched. I think he's in for quite a bit of discomfort in the short run, at least, as his body adjusts to the correction. This, along with the long surgery, makes for slow going.

I have been looking back over posts on immediate post-op recovery for children, and it has helped me know that all this is part of the deal. The nurses all assure me he is progressing well. With such a long fusion and surgery, I'm sure al this is to be expected. Tomorrow he will be sitting up all day, and walking more.

I'm somewhat sleep deprived, but I found that an evening nap makes it worse (then I can't sleep as well at night when things are usually quieter), so I napped this morning and that felt wierd, too. I hate to miss anything during the day.


Mary Ellen

Susie*Bee
11-15-2008, 07:42 PM
Mary Ellen-- just wanted to say you are doing a wonderful job of explaining this early recovery time that will benefit other moms who wonder what it will be like. Everyone's hospital time and recovery are different, but when you read through a few, they sure give you a lot of insight as well as an understanding that, even though it's a tough time, you do get through it all ok.

I've been so glad to read how well Sidney is doing. Dr. Cahill had such a nice manner when he saw me during my hospital stay. I'm so glad your experience is going well. It won't be too much longer till Sidney will be eating normal food again-- and probably longing for some of your home-cooking. ;)

As far as those naps go, remember that you are going to need your strength for the long haul, so try to not get to the point of exhaustion. Eat well, try your best to catch enough zzzzz's to keep you going ok. Sidney will need your vigilance more once you get home-- right now he has other eyes keeping watch over him as well. Ask them to wake you if he is uncomfortable or awake and wanting your "awake" presence with him.

Big hugs-- and keep us posted with the progress. :) Susie

Pooka1
11-15-2008, 07:56 PM
Mary Ellen,

It's great to read your updates. I know this information will benefit others.

Your mention of Sidney's height triggered my memory of the first time Savannah stood post-op. She seemed so much taller though she didn't gain nearly as many inches as Sidney.

Take care of yourself. I know it seems impossible to think about yourself but I had to learn that lesson also.

Best regards,
sharon

scoliboymom
11-15-2008, 09:25 PM
Hi Mary Ellen
I've been following your posts and so happy for you and Sidney that this stage is now behind you. Although you both still have your work cut out for you it's that relief of being on the other side that I remember so well.
He seems to be doing very well and will be out and running again before you know it.
As Susie and Sharon say take care of yourself too and we'll be here for you.
So glad too that they could build some kyphosis in. Patrick's just wasn't to be
but we knew that.
Wishing Sidney a fast recovery

malka22
11-16-2008, 02:28 PM
Mary Ellen,

Sorry I'm weighing in at this "late date," however, better late than never. I read all of your posts & am so very happy that all went well. Welcome to the other side!!! I'm interested to know what Sidney's curves are now & I would bet that the correction is MUCH better than Dr. Cahill originally predicted. What I found is that the surgeons like to predict not such a great correction & then you are pleasantly surprised at the amazing correction they WERE able to achieve.

Also, keep in mind, that although we feel "stuck" on the #s, I know I was, overall the most important thing is how Sidney is feeling, how free of complications he is (I pray there are none!!), & how successful the surgery was. From what I am reading, your family has truly been blessed with all of the above!!!

As far as Sidney's breathing function, I can't wait to hear the good news. If he had difficulties pre-op, I'm sure you've noticed the difference now that you're post-op. My daughter had a thoracic lordosis as well, & her breathing was compromised. After her fusion, she stopped taking those extra breaths/stopped having SOB. What a miracle! I can't wait to hear the same about Sidney.

Healing prayers & love,
Martha

P.S. That's awesome that Dr. Cahill was able to build in just the right amount of kyphosis. I knew he'd be able to! I know you will look back, read your old pre-op posts, & cry with joy at the wonderful outcome!

WNCmom
11-16-2008, 05:17 PM
It has been a challenging day for Sidney. Last night he's gotten the most sleep so far (and so has mom), but the general consensus seems to be that the meds are so effective on him that they not only dull the pain, they make it difficult for him to walk well. The odd thing is that he seemed more "with it" on the morphine than he does on the oral meds, which make him somewhat glassy-eyed and a little groggy. To try to clear his system, he's had no pain medication since last night. He has not been in bed since he got up this morning, and sitting up in a chair has been tiring and painful. However, he has walked several times today, the last time pretty far and without support by nurses. His blood oxygen levels are holding well, which means his breathing is effective (this was a concern, and the reason why he has not been allowed to be in a prone position or even reclining today until now).

The last hurdle is one he has not yet crossed: the big bowel movement. His belly is tight and painful, and he has had laxatives and prune juice, and lots of water. It will come; we just don't know when. Still has the foley catheter in. I don't know when we will leave the PICU or be discharged, but I feel sure Sidney will be among those who take more than 5 days to be ready to go "home" (we will go to a nearby RMD house because we live so far away and want to stay nearby for a while). The plan was for him to leave Monday 11-18. I have a feeling the BM will make a big difference.

Martha, Renee, and Ramona and all--thanks for sharing the results of your childrens' surgeries. For those who are fused to L4 (you, too, Susie--your fusion is the same as Sidney's), I'm interested in how flexible you are and what the limitations are. I know I can't do much about the fusion, but I guess I just want to be prepared.

I did take a nap today, Susie, while my husband was here (he is here all day, and only sleeps away at night). You are right, I know, about being prepared for the post-hospital duties.

Thanks for being out there. Even with a care page so I can hear from friends at home, I think I would feel very alone unless I was in contact with those of you who have walked this road. Lisa and Tahlia will be in my thoughts tomorrow.

Mary Ellen

Susie*Bee
11-16-2008, 05:52 PM
I think comparing Sidney's and my fusions would be like comparing apples to bananas... age changes the picture entirely, plus I have arthritis and DDD, etc. There have been some younger people with long fusions though, so maybe you can hear from some of them if you start a thread asking about it. I'm glad you got some sleep last night. Hopefully Sidney will be feeling better soon, especially since they are working on the pain med dosage. It was explained to me that they want you feeling ok enough so that you feel like doing things, but it easily crosses over into the area where you are too doped to function well. There's that "just right" area where you aren't in too much pain and you are able to think ok and manage yourself. He'll have success with his bowels sometime soon... but that first one can be a challenge. (Isn't it funny how this becomes a BIG THING after this surgery. Just like those first little blurps of gas are such a victory! Worth cheering about at the time!) :D

malka22
11-16-2008, 11:28 PM
Mary Ellen,

What helped Laura achieve her first BM were those Metamucil cinnamon wafers (& colace). Here's another tip: mix the prune juice with some milk to make it creamer & less bitter. Since you don't have a stove, heat it in the microwave for a few secs.

I'm so glad to read that Sidney's blood oxygen levels are holding well. Remember to have him blow into that portable spirometer as much as he can, to help his lungs get back to normal, so that before you know it, he'll be able to get the right combination of resting in bed AND being up in a chair & walking.

What oral meds is Sidney on? After the morphine pump & IV morphine, Laura switched to oxycodone oral meds (& tylenol) & it did not make her groggy. Of course everyone is different & respond differently to meds, & I'm sure there's an excellent pain management team at Shriners, however, I just thought I'd mention the oxycodone.

Don't forget to keep yourself hydrated, get proper nutrition, & nap whenever you can. It's amazing what food, drink, & sleep can do for caregivers!!!

Hang in there & keep us posted!

Martha

WNCmom
11-17-2008, 06:30 AM
Martha--

Thanks for the note. Sidney urinated on his own (they removed the catheter last night) this morning for the first time. Yay! Now we just have to clear the BM hurdle. He slept well last night, and so did I.

The pain meds they were giving him were oxycontin (sp?) and percoset. The oxycontin is long-acting and seems to be the culprit for whacking him out so much that he has trouble staying alert, so he is doing percoset only, which seems to do the trick. He's just getting a half a pill as I type this. Pain seems to be under control, with tummy still bloated. thanks for your ideas on loosening things up. I'm hoping today will be the big day.

He is hungry and asking for food, but juice only for a while yet.

I see your daughter's fusion starts at T2 as Sidney's does, and that she also had an upper thoracic curve as he did. Guess I'm just looking for situations that are at least a little similar.

M.E.

mariaf
11-17-2008, 09:10 AM
Hi Mary Ellen,

I think all things considered Sidney is doing GREAT!! I'm so glad to hear is pain is being controlled and he only needs the percoset. I'm sure that is every parent's biggest fear - that their child's pain won't be managed afterwards.

I can't tell you how happy I am that everything has gone well for Sidney so far!!

Best regards and although I am not good at following this advice - take care of YOU too :)

WNCmom
11-17-2008, 05:40 PM
I can't believe this is the 4th day! Time has flown since surgery on the 13th.

Sidney slept 5 hours at a stretch last night with essentially no meds at all. Mom, of course, slept just as well. It was the last night in the PICU; he was moved to the regular surgical floor right after lunch.

Despite lots of liquids, another laxative tablet, and a "fleet soda" a few hours ago, the bowels are still stubbornly resisting any movement. He has been up and walking the loop around the floor.

We are to be discharged tomorrow, we are told, as Dr. Cahill feels he is on track. The only concern is the left lung, which still shows slight collapse. This afternoon S. has developed a mild fever, which is odd because for two days it has been normal.

When we leave the hospital we will be discharged to a Ronald McDonald House here in Phil. We had planned to stay until a final clinic on Nov 25 because we live so far away, but now our final clinic will be this Friday, and we will leave that day. I'm hoping he's feeling much better by Friday! He doesn't really feel bad, just stiff and tired after moving and walking--all to be expected, I'm sure. It's the lung and the temp that need to be addressed between now and then. I'm sure they won't let us go if there's an issue on Friday.

Mary Ellen

mariaf
11-17-2008, 06:32 PM
Hang in there, Mary Ellen!

I agree with you that if there is any issue at all I would want to stick around past Friday just so they can monitor Sidney, although I'm sure he'll be just fine. I just feel it is better to stay a little longer (not just in Philly, but in terms of being discharged from the hospital) and have them keep an eye on things.

I know it's up to Dr. Cahill and I am sure he will not take any chances - if he feels he needs to keep an eye on Sidney for another day or two, I'm sure he will :)

malka22
11-18-2008, 01:02 AM
Mary Ellen,

I ditto everything that Maria said in her last post.

Yes, Laura is fused starting at T2. I doubt that the extra 2 lumbar vertebrae that Sidney is fused will make that much difference as far as how Laura & Sidney will be able to move in the long run (flexibility-wise). Based on the other posts on this thread, it sounds like it's a great idea to fuse to L4 from the get go, to avoid having to extend the fusion in the future (G-d forbid for my daughter). Today Laura is 7 months post op. Before you know it, Sidney will be there too!

What's the reason why Sidney can't start solid food yet? IMO, that will help him have a BM. Also, stopping the oxycontin will help, as it is very constipating. Any moment now......

How far away do you live? Going to the RMH is a great idea. Best of luck tomorrow on discharge day. Keep us posted once you get settled.

Did Sidney have PT & did he do the steps yet? Can he get in & out of bed without help?

Again, I'm sorry to hear about his lung & the fever. I am praying that they will both be resolved ASAP.

Pooka1
11-18-2008, 07:28 AM
Mary Ellen,

I wasn't too worried about the BMs with Savannah. It was a few days after her discharge that she finally was able to go if I recall correctly. Of course she ate almost nothing in the hospital and only was able to drink or have ice after the third day as I recall when there were significant belly sounds. As someone said, I think it's correct that the narcotics will slow the bowels.

Overall, it sounds like Sidney is recovering on schedule and you will be home sooner than you thought. That's wonderful.

Best regards,
sharon

WNCmom
11-18-2008, 02:58 PM
We had been planning to leave today but they decided to keep Sidney another night. His bowels did move last night (it was up and down for about 4 hours), and now he is pretty wiped out. They want him to stay until tomorrow and regain his strength and intestinal stability. He is relieved, as he did not feel ready to be released.

He did go for x-rays today and the wonderful thing about that was that in the waiting room I met a 19 year old young woman who had been fused at the same levels as Sidney three years ago here at Shriners. She'd had an even longer surgery than Sidney. She was straight and very tall and moved very well. I asked her and her mom if I could ask them some questions about her flexibility and she said, "Sure" and proceeded to bend over easily and touch the floor with her fingers, with her back flat. I was SO happy to see what is possible. She did say she had to work at it, but she takes yoga classes in college and only some of the poses is she unable to do. She made my day.

To answer questions: Sidney is eating solid foods, is getting out of bed a lot, and is on minimal pain meds--about 1/2 percoset 2x /day. I'm tired, but we're fine. I think I'll let my husband stay with Sidney tonight so I can get an uninterrupted night's sleep.

Mary Ellen

JenniferG
11-18-2008, 03:26 PM
Minimal pain meds at day 5? That is amazing.

No mention of his fever, so I guess that's good news.

Mary Ellen, I hope you are fast asleep as I type!

Jen

pmsmom
11-18-2008, 06:18 PM
Hooray for Sidney's progress!

Hope you get some well needed rest!

Carmell
11-18-2008, 06:52 PM
Mary Ellen,

I don't know where I've been. Didn't even pay attention to the fact Sydney had surgery recently. I hope all is going well (still). Sounds like he's doing AMAZINGLY well. So good to hear. Hopefully he has many more good days, and few, if any, setbacks. Best wishes to you both!

malka22
11-18-2008, 10:42 PM
Wow....1/2 a percoset twice a day on Post Op Day 5????? That's incredible,,,if not unheard of!!!!!! Nice going Sidney!!!! Keep up the great work. I'm so happy for you! You'll be home in no time & on to the next phase of this lovely journey! Great story about the 19 year old who touched the floor. I'm glad that helped settle your curiosity on what Sidney will be like down the road, flexibility-wise.

Happy Homecoming tomorrow!

WNCmom
11-19-2008, 03:42 PM
Hi everyone--we got sprung from the hospital after lunch today and are happily ensconced in the Philadelphia Ronald McDonald House. It's a beautiful new facility with many amenities and feels a little bit like heaven. I highly recommend it to anyone using Shriners or CHOP or another local hospital. They cannot guarantee a space, but we were fortunate to get a room there. It is a very comfortable place at a minimal cost.

Sidney is doing fine. He had a little trouble getting into the cab when we left the hospital. Besides being stiff and not being about to slide over once he sat down, he couldn't duck his head to get in the door (he is now taller than his 6' father), so he had to sit in the front seat. It was a short ride, so he tolerated it well. His last blood work showed a slightly low blood count, but that's the only thing to be concerned about. Still has a little bloating and swelling. Still on minimal pain meds, and his spirits are good; he's back to reading a little and is choosing to sit up in a chair to do so.

The lastest travel news is that we will be flying home to the NC Smokies on Saturday, after a final check with Dr. Cahill on Friday. Based on today, I am feeling pretty confident Sidney will be up to that. It will be great be at home for Thanksgiving.

PS One thing I forgot to add last week: the MRI done the day before surgery showed the syrinx that had shown up on the previous two (done in 2006 & 2007)was completely gone! Amazing.

Mary Ellen

Pooka1
11-19-2008, 04:31 PM
Excellent news, Mary Ellen!

I'm so happy for your family. :)

It isn't the same here in NC without you. :D

Best regards,
sharon

ps. I echo the comments about the small amount of pain meds Sidney is on. Savannah was in need of far more at that point.

pmsmom
11-19-2008, 09:53 PM
So glad to hear things are going well! I'm so happy for you all!

Marian

discombobulated
11-19-2008, 09:56 PM
Mary Ellen,

I keep forgetting to post here(or running out of time, or having my computer crash!)...but I've been following all your updates. I'm so relieved for you that Sidney's op went well. I guess it's kind of redundant to say again, but WOW he is doing well!! And it's all up from here :D

Best wishes to you both.

Kitty
11-20-2008, 12:06 AM
Just want you to know I'm still thinking of you and reading when I can. So glad to hear it's been a good recovery for you and that Sidney is out of hospital and you can all now start your journey towards going back home.

Wishing you the best

Love Lisa

WNCmom
11-21-2008, 11:55 AM
Hi all--

We had a full day of rest here at the RMDH (a quiet and relaxing place) before heading back to the hospital for a checkup with the surgeon before heading back home to NC. All is well, although for a few minutes we were in a panic waiting for blood lab results. When Sidney was discharged, his hemoglobin was low, and Dr. Cahill said that if it was any lower, he would have to be readmitted overnight for a blood tranfusion. We all breathed a sigh of relief when the labs came back and showed that the hemoglobin was up.

So we are good to go for the plane ride and looong day of travel tomorrow. Our "excursion" to the hospital took all morning, so it was a good practice run for an even longer day tomorrow. Sidney still has a little swelling of ankles and belly. He is uncomfortable sitting for long periods, although this discomfort is mitigated if he is destracted by a book, a movie, or a computer. He still walks very stiffly and gingerly, and I understand this is also common until three weeks or so. (I add this so anyone whose child is facing surgery will know this is not out of the ordinary).

Oh--and the post-op T curve was measured today--it's about 17 degrees. My husband, who has mild scoliosis, probably has a curve larger than that. His has never been measured.

Mary Ellen

Pooka1
11-21-2008, 12:00 PM
Great news.

It will just get better and better.

Best regards,
sharon

Kitty
11-22-2008, 08:44 AM
Hi Mary Ellen,
Just reading through some of your posts as it helps for me to know what might come next in the recovery road, although I've noticed that Sidney has progressed WAY further than Tahlia in a shorter space of time. Like walking within 48 hours and off PCA pump and only on oral meds in 2 days. OMG - I think that's amazing. Tahlia is still on her PCA as well as taking oral meds although they weaned her of ketamine after about Day 3. It's now 5 days post-op and the physios have had her sitting up twice so far (once per day and gradually will try to extend this each day). But that's as far as we've gotten. Maybe they're going easier on her because of her reduced lung function and prior lung collapse or something!! But I think it's amazing fast how Sidney has progressed.

Would be interested to know what others think about the difference in post-op recovery and the exectations different staff obviously have for patients in different hopsitals/states/countries!!

Glad it's all going well Mary Ellen (and good luck with those poos:p:p:p)

Lisa

discombobulated
11-22-2008, 05:07 PM
Mary Ellen,

I'm just thrilled that the surgery's had such a fantastic result & Sidney is progressing SO SO well! No doubt he will recover in even greater leaps & bounds from the comfort of home, when he gets there. Man...I can't believe he's on so few painkillers! Best wishes for his continued recovery - & take care of yourself, too :)

--

Lisa,

Tahlia's recovery sounds a WHOLE lot more like how my prior 2 have gone. Which is why I'm just blown away by Sidney's progress! lol. I had some reduced lung capacity both times, but not a collapsed lung. I know the going is tough & slow, but she actually sounds like she's doing GREAT. As she gets stronger, the PT will get a little more challenging - sitting a little longer, standing, even walking soon! They will usually time such PT sessions to coincide with the peak of the pain meds' effect, so she won't be in too much pain. The being exhausted / sleeping lots is very, very normal. Besides the huge trauma that her body's had, the painkillers & residues of anaesthetic drugs in her system have strong sedative effects.....but, sleeping's a great way to let the body rest & heal :) And I'm really glad to hear that you're getting some better sleep yourself, away from the hospital.

All the best to you both. Take care.

WNCmom
11-22-2008, 09:17 PM
It was a 9-hour day of traveling, but we're back at home. Sidney handled the two plane rides and two car rides pretty well, but not without discomfort; he took his two percoset doses back to back instead of spaced out. We found a wheelchair in the airport to work better than we thought it would for him, and the design of the plane seat made all the difference when it came to comfort--one was okay, the other not nearly so good. He's now quite comfortable in a recliner at home.

He does seem to be doing pretty well. In response to your comments, Lisa, I will say that the PICU nurses at Shriner's really did expect Sidney to sit up the first day. If he hadn't had such a strong reaction to the oxycontin, which made him really groggy and unstable on his feet, I bet they would have insisted he walk the first day, too. I think they had higher expectations than the surgeon. Also, because his lung was slightly collapsed, they really didn't want him in a prone position.

Since the enema, he still hasn't had the big "poo," and is on stool softeners. It's tough, because they've also prescribed iron pills for him, and that causes constipation. Dr. Cahill said to call if it hasn't happened by Monday, so the pressure is on! As a family, we typically eat a whole foods, high fiber diet (think beans and brown rice), so maybe now that we're back home with what his system is more used to, things will start moving. It's amazing how focused we become on these basic bodily functions!

Lisa, Tahlia sounds like she's progressing well. You're still in the tough part, and soon all this will be behind you. She has been through a lot, and I'm sure she is taking the time her body needs to recover. Does she have much swelling? I think Sidney still has some in his lower extremities.

Do keep us posted.

Mary Ellen

JenniferG
11-23-2008, 02:25 AM
I am amazed at Sidney's recovery thus far. A 9 hour trip home and he's sitting comfortably in a recliner! You must be incredibly relieved.

As for the big poo, I think being able to fully relax at home (can you really relax at hospital?) as well as the foods he's used to, may be just what he needs for his digestive system to get back to normal.

I wish you all get a good sleep tonight!

pmsmom
11-23-2008, 04:06 PM
Glad to hear you all are home safe and sound. Sounds like he did just great coming home, too!

I think he will continue to improve rapidly--something about being in familiar surroundings! :)

How much solid food is he eating now?

WNCmom
11-23-2008, 04:27 PM
He is eating anything he wants at this point, but we are emphasizing fiber and fruit juices--anything to get things moving. Trying to stay away from things like white pasta and cheese, which tend to stop up the system. He's had no pain meds today, so I'm hoping that will help.

pmsmom
11-24-2008, 01:01 PM
He is eating anything he wants at this point, but we are emphasizing fiber and fruit juices--anything to get things moving. Trying to stay away from things like white pasta and cheese, which tend to stop up the system. He's had no pain meds today, so I'm hoping that will help.

That is wonderful! I'm so glad for you all.

Btw, I wanted to let you know that we've found a product called fruit-eze that you might want to check out. My dd's always had some constipation issues, but this is a product made from prunes, prune juice, dates, and raisins. She takes it daily now and hasn't had any problems for quite some time.

I'm not a salesman for it, but I think it's great stuff. :D

Hope Sidney's up to Thanksgiving dinner! All mine are interested in is the pie!

Marian

txmarinemom
11-24-2008, 01:30 PM
... I wanted to let you know that we've found a product called fruit-eze that you might want to check out.

Marian,

I'm sure it's great stuff, and I can't quite put my finger on *why*, but the name "fruit-eze" is just sort of disturbing ... (shudder ;-)

And Mary Ellen, I'm still just cracking up about "the big poo". No doubt these kids would be MORTIFIED to know what's discussed about them - LOL! Glad to hear he's doing so fantastically!

Best regards,
Pam

WNCmom
11-24-2008, 04:36 PM
Pam--

I've had similar thoughts--I think he WOULD be mortified if he knew what I was telling folks. But I have been more discreet about a few things....

In the BM department, there was a small bit of progress yesterday, but things are still going slow; I know he's still pretty stopped up. Amazingly, he's had no pain meds in 48 hours, and wakes up only once during the night for help getting out of bed to go to the bathroom. Is it going too well? I'm beginning to wonder if I should be nervous about this.

Mary Ellen

txmarinemom
11-24-2008, 05:18 PM
Mary Ellen ...

I can't believe I'm even linking to this (after I never wanted to talk about it in the FIRST place - lmao), but I wouldn't worry yet ...

After waking up barking for food, my cell phone and coffee - and training for a 5K a few days after I got home, I had, um, issues. Note I posted this TWELVE days after I had surgery.

TWELVE.

My story (http://scoliosis.org/forum/showthread.php?t=6878&highlight=talk), if you dare ;-).

Regards,
Pam

pmsmom
11-24-2008, 06:16 PM
Marian,

I'm sure it's great stuff, and I can't quite put my finger on *why*, but the name "fruit-eze" is just sort of disturbing ... (shudder ;-)

And Mary Ellen, I'm still just cracking up about "the big poo". No doubt these kids would be MORTIFIED to know what's discussed about them - LOL! Glad to hear he's doing so fantastically!

Best regards,
Pam

I guess it's called fruit-eze b/c, well, you know. ;)

But it is all natural and helps keep the laxatives away. :)

Not too bad tasting too!

Marian

WNCmom
11-24-2008, 08:16 PM
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
11-24-2008, 09:20 PM
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
11-27-2008, 06:33 PM
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
11-27-2008, 06:56 PM
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
11-27-2008, 06:59 PM
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
11-27-2008, 09:01 PM
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
11-28-2008, 09:08 AM
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
11-29-2008, 12:30 AM
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
11-29-2008, 08:02 AM
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
11-29-2008, 10:39 AM
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
11-29-2008, 11:15 AM
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
11-29-2008, 11:24 AM
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
11-29-2008, 11:37 AM
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
11-29-2008, 11:41 AM
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
12-04-2008, 04:39 PM
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

laurieg6
12-05-2008, 12:55 AM
It sounds like a great recovery. You're over the worst of it and totally on the upswing. Congratulations!

WNCmom
12-11-2008, 02:33 PM
Okay, bear with me--I just have to give you an update on Sidney. I can't believe it's been 4 weeks since surgery.

He's now walking up to 1.5 miles a day at one stretch, and yesterday he went to school to attend a 45-minute geometry class. He's back doing schoolwork and it's the only subject he's had questions about. He is talking about going back to school next week for half-days. We'll see how it goes; he still gets tired easily and also needs to eat about every 1.5 hours. His body is churning through the calories as it heals and he still has lots of weight to gain back.

And he does seem to be standing just a little taller and straighter as we move forward.

Mary Ellen

pmsmom
12-11-2008, 02:36 PM
Okay, bear with me--I just have to give you an update on Sidney. I can't believe it's been 4 weeks since surgery.

He's now walking up to a mile a day at one stretch, and yesterday he went to school to attend a 45-minute geometry class. He's back doing schoolwork and it's the only subject he's had questions about. He is talking about going back to school next week for half-days. We'll see how it goes; he still gets tired easily and also needs to eat about every 1.5 hours. His body is churning through the calories as it heals and still has lots of weight to gain back.

And he does seem to be standing just a little taller and straighter as we move forward.

Mary Ellen

Congratulations! That is wonderful news! :D

How is is post-op pain? What meds is he down to?

Marian

WNCmom
12-11-2008, 03:08 PM
Marian--

Sidney is one of the lucky ones--he hasn't had any pain meds since our plane ride home 9 days post-op. That day we gave him some because it was going to be a long day of sitting. But really, he was on minimal meds from the time they took the morphine away at 2 days post-op, because the valium and oxycontin made him so groggy he kept closing his eyes and could hardly walk. At day 3, 1/2 percoset about 2x a day was sufficient. He went off the percoset at 7 days post-op because he just didn't need it any more. I understand this is almost unheard of. Maybe it's because, before surgery (he's 13), he'd never had pain medication, but I bet it's just the way he is.

The downside of his sensitivity to meds is that (I was told) during surgery they had to really watch the anesthesia, because it was causing his blood pressure to yo-yo up and down. I think at first they had no idea how little he would need to do the job.

In any case, for some reason his pain has been minimal. We're very fortunate.

Mary Ellen

Carmell
12-11-2008, 03:43 PM
Mary Ellen,

I'm very happy to hear a great report about Sidney. Sounds like he's doing wonderful. Excellent news that he's doing school work and feeling well enough to keep moving forward. Hopefully being a teenage boy means his has a healthy appetite (don't all teenage boys eat you out of house and home? mine would if I let him) and will continue to give his body the calories he needs to heal and get back to a healthy weight. Lots more well wishes to him.

Pooka1
12-11-2008, 04:03 PM
Mary Ellen, that is really good news! Things will just keep getting better and better.

sharon

JenniferG
12-11-2008, 04:41 PM
Sidney has done so well. How wonderful that he's had such minimal pain. I wonder why everyone is so different? I want what he's having!

Feed him macadamia nuts. They are wonderful for putting on weight, and are packed full of protein, fibre, vitamins and minerals and of course, the good oils. If he munches a handful of these between his frequent meals, he'll regain his weight in no time. (Which is the reason I stay away from the tasty little morsels!)

WNCmom
12-11-2008, 04:47 PM
JenniferG, what a great idea! Thanks so much for that tip!

I have no idea why he has no pain--in fact, I've wondered if I should worry about that (I worry about everything else...). I suspect when he starts increasing his activity in a few months his muscles will be "more communicative." Every time he says he is a little stiff, I take that as a good sign that things are repositioning themselves.

M.E.

pmsmom
12-11-2008, 09:42 PM
I'm glad to hear that Sidney is doing so well. That's wonderful that he hasn't needed much in the way of pain meds.

Congratulations to you all! :)

laurieg6
12-12-2008, 08:34 PM
It's wonderful that Sidney has such little pain. Alexander had very little too and it always amazed me how quickly he stopped all the meds. I think the walking really helps because we took long walks too. I noticed that when he was a little achy, taking a walk would stop any pain and he'd feel better.

Congratulations on his posture improving and that he's having such a great recovery! I'm sure you're feeling more relieved.

Kitty
12-13-2008, 01:58 AM
Hi Mary Ellen,
That's incredible news! I'm so glad to hear Sidney is doing really well. Now if my maths is correct, 1 mile = just over 1 and a half kilometres (or 1600 metres -wow!!!), that's amazing. Tahlia is 3 weeks 5 days and i just got back from taking her for a little shopping. She got a little tired after an hour and we came back home but she sits down in between walks and i don't move her too much. I am amazed at how quickly she has progressed. When we came home a week ago, she was sleeping and lying down more often than sitting/standing, but she hasn't had to lie down for about 3 days and is completely off any pain meds now that i am totally amazed at how far she has progressed. I am sure you (like me) are so relieved to see your child come so far so quickly.

Hope he continues to amaze you.

Lisa

WNCmom
02-13-2009, 04:20 PM
I'm posting on this old thread just to keep the info on Sidney together in case someone facing surgery wants to follow it.

For Sidney's 3-month post-op checkup, we had x-rays done locally and sent up to Shriners in Philadelphia (6-month checkup will be in person). We just got the word today that they look fine. Here at home, Sidney's muscles still haven't caught up with his straight spine (still has a shoulder droop and a slight list to the left), but the surgeon says it takes 6-9 months for those to resolve. I hope they do for Sidney! I have been pretty down about this lately, so it was good to read his email comments. I'll just have to chill out. But I'm so grateful S. is healing well and as far as I can tell he feels great.

He is now allowed to bend to 45 degrees. Riding a bike, attending a school dance, light jogging, and swimming are also allowed now. Most of those aren't likely to happen at this time of year where we live, but there is a dance tomorrow night, so if he wants to go he can. He's also got the okay to throw a frisbee, which I know he really wants to do. And he can stretch now if bending is no more than 45 degrees.

Hard to believe it's been three months. Where did the time go?

Mary Ellen

Pooka1
02-13-2009, 06:42 PM
Yes that is hard to believe it has been 3 months! Wow.

It sounds like he is recovering well. I agree that it's too early to worry about the posture thing. It will likely even out.

Best regards,
sharon

pmsmom
02-14-2009, 02:06 PM
Congratulations, Mary Ellen! And especially Sidney!

Marian

smileyskl
02-14-2009, 07:51 PM
Mary Ellen,

I was shocked that Katelyns sholder is kicked up on one side and she still has a lean too. I haven't had a chance to talk to her doctor about it but he mentioned it to me just long enough to say that it may or may not fully correct itself but as far as the spine goes the correction is great. I plan to discuss this with him at follow-up. It is very dissapointing to me because I expected it to be completely straight coming out of surgery but I guess I don't understand the process.:confused: Katelyn also noticed but I just played up the fact that her spine is straight and she didn't mention it again, but I know she is dissapointed:(

Sharon

WNCmom
05-11-2009, 07:21 PM
In two days it will be 6-months since Sidney's surgery, and we've just got back from Philadelphia Shriners and his follow-up appointment with the surgeon who did the fusion (T2-L4). All seems to be going very well. His fused curves are 17T and 13L. Despite my worries, x-rays show his pelvis, while not yet quite straight, has leveled significantly since surgery. That was good to hear and see. Dr. Cahill has told us all along that posture issues often take 6-9 months to resolve.

Most restrictions have been lifted. He can lift, twist, bend, carry a backpack, and do most sports. The ones he's not allowed to do he wasn't interested in anyway. Although he easily hiked 9 miles with us on Easter Sunday, he's not had much upper body activity, and he's ready for more.

Sidney is still Risser 0 (he's 13, and 6 ft. tall--very thin), so there's more growth to come. We'll go back in 6 months and then every year thereafter until he's 21.

When I think back on the last 18 or so months it just makes me want to thank you all again for being there. I've learned so much and felt so supported through the surgery and afterward.

Mary Ellen

Pooka1
05-11-2009, 07:31 PM
Mary Ellen,

So glad your son is doing well.

Best regards,
sharon

jillw
05-12-2009, 11:25 AM
thanks for the update. That's a great correction! you must feel better to see radiological evidence that the pelvis is straightening. I'm glad restrictions were lifted (as I'm sure he is). Can he ride roller coasters?

laurieg6
05-13-2009, 03:08 AM
That is great news, Mary Ellen.

I'm really happy for Sidney (and you!).

He is so tall - very cool!

WNCmom
05-13-2009, 08:49 AM
Can he ride roller coasters?

Jill--

We did not ask about that. Since we'll see him again in November, we asked specifically about activities Sidney will be doing this summer: trail mountain biking, backpacking, rock climbing, swimming/diving, kayaking, ultimate frisbee, even a zip line over the lake at camp--all are okay. We rarely go to theme parks and it's not on our schedule for this summer. Dr. Cahill told us he preferred Sidney not dive from a high board (diving from poolside and jumping in feet first if it's deep enough is okay). Motorcycles, snowmobiles, trampolines, tackle football, ice hockey (skating is okay) and jumping on horseback are "never" activities.

The sheet of restriction guidelines from Shriners lists rollercoasters okay at 2 years post-op. I will be sure to ask when we go in November.

Mary Ellen

babachi
05-13-2009, 04:36 PM
Glad to hear Sidney's doing so well. Time really flies.
Bethany