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mamakay
11-13-2004, 07:46 PM
Hello All!!
Thank you everyone for thinking and praying for us on surgery day. My prayers and thoughts went to you all as well.
I was so glad to hear everyone got to get their surgery complete as I know we all were worried something would get in the way.
I thought of everyone here and wanted to let you all know how we were doing.
Finally 6 days after surgery we drove the 2-3 hours back home.
It is scarey bc I'm afraid of infection and we can't just run up to the Dr office to have him check things. She is better but the vicadin made her sick and now on Tylenol 3. Still taking it every 3-4 hours.
The nightly torture of rolling and vital signs were as you all warned me. So many things posted here helped me prepare.
The posterior surgery took 4 hours.
Her hip graft has given her alot of pain but we are now getting in bed on the opposite side which helps alot.(I don't know why I didn't think of it sooner.)
Now today is her worst day(and mine)bc her neck at the top is throbbing and says it feels like something is trying to poke out!
I am watching bc I'm so scared of infection as the nurse told me to be careful of...
Please keep me posted of all your progresses and advice. I know we have a long journey ahead but thank God we are post op.
untill later, mamakay

mamakay
11-13-2004, 08:23 PM
I wanted to add a few things, as I've caught up on all the posts I've missed the last week,it reminded me .
Ste had her morphine and catheter and dreessing and drain (scarey) pulled out all on the 3rd? day. It was alot bc she overwalked also.
They gave her one unit of blood (my husband and I donated a total of 2) during the surgery and the next day she was so pale and blood count was low so they gave her the 2nd unit on the 2nd day.
Did they take blood everyday the first 3and4 days from anyone? They did her.
She had a rough start but did good on her walks.
Also got her hair washed on 5th day which had to feel better, but wore her out. Brought pillows to the salon designated for patients! Don't miss this opportunity.
Make sure you get a wheel chair and check the salon hours bc this was a great thing to have done there and not at home.
It has been hard but I keep remembering and reading (Peggy) advice to see the positive side and know with each day it will be different and hopefully better.
Yahoo!!mamkay

jc3
11-13-2004, 09:25 PM
mamakay
i am so glad everything went okay. I was waiting to hear from you. Now the three of us are all home and all went well. I know how she feels with the pain. Nicole had blood taken from her everyday until the day we left. Nicole on the third day was very pale and they said she was anemic from the surgery and were going to give her blood, but they ended up not needing to. we will have to all go through the recovery together. I know it is going to be a very slow process. Nicole was on vicoden after the morphine, but it wasn't strong enough so they have her on percocet. Don't worry about infection she will be fine. Does she have steri strips that just fall off on their own? nicole's surgery took 4 hours also, which i thought was pretty quick. Well, we all made it that day. I cried for 4 hours i think until the surgeon came out. It was a rough day.
write when you can and keep me updated on her progress
jennifer

mamakay
11-14-2004, 12:16 AM
Jennifer,
So glad also to hear your day was much like mine.
I thought the 4 hours was good too. Did Nichole have any ribs taken out or bone grafting at hip?
I cried so much before the surgery and even cried the day we wheeled her down to get loaded in the car bc I was so thankful it was done and we were GOING HOME!!!!!!
It was hard to sleep in her room with all the disturbances and knowing she was in pain. Also some nights my 19 year old stayed too so we were zoombies but rotated at the hotel where my husband stayed and one of us slept while the other was up.
It only worked that way for a few nights since she had to come back to Austin to go to school and work.
I hope you are right about her back healing ok. She is finally sleeping this eve.
How long do you think they will give our girls the pain killers??
I don't see my daughter getting close to even cutting the dose in half yet. Did Nichole learn how to swollow pills? That sounds like a good strong drug, your lucky her stomach can handle them.
I was afraid the tylenol 3 would not be strong enough for Ste but seems like I have to give them to her frequently. I hope they're not bad for her liver like the motrin were said to be since she was taking so many of thembefore.
Did they offer Nichole the liquid vicodin? I wish Ste could've handled the vicodin.
Yes she has the steri strips and some have come off. I got some extra and have put some back on bc I don't want the incision to open too soon, also maybe it will help the scar to heal smaller.
I think she is fused from T4 to L2 with metal,some hooks and more screws, how about Nic?
Well it's great to hear from everyone here and yes I will continue to keep you posted.
Bill's mom how are things??
Take care,mamakay

jc3
11-14-2004, 07:19 AM
hi kay,
Nicole is also fused T4-L2, so i guess they should have the same amount of flexibility. Nicole had ribs removed for her graft. Do you know what degree curve they got her down to? I don't know yet, i'll find out at out appointment. Nicole doesn't think she is feeling any better but last night she slept all night without a pain pill, so she has to be doing better. She still cannot get up and walk on her own yet. When i spoke to the hospital the other day they said to start trying to have her go longer on the pain med. I'm sure they will give you them as long as you need them. Nicole can not sleep in her own bed yet. She is more comfortable on the couch. Nicole never learned to swallow a pill, they had a pill crusher that makes it into a fine powder and they mix it and i bought one for home and she does it. Last i heard bill was doing very well. I think he was moving around more than nicole. I haven't heard again.
write when you can. - hope you have a good day today
jennifer

Bill's mom
11-15-2004, 01:42 PM
Hi Kay and Jennifer,

First off, welcome back Kay. We were wondering how things were going for you. So glad that you made it home.

As for Bill - he is doing really well. He has not had any more bouts of depression and is pretty much off of his pain meds. (Yesterday he sat up for too long, so he took a pill last night, but that's the only pill he's had since Friday night.) I think the reason that his recovery may seem quicker is that he did not have any ribs removed and he had donor bone for his fusion. I think that makes a big difference in pain and in recovery time.

We had our first post op appointment this morning. His curve is now 28 degrees which is a big improvement from 63, but - of course - I worry about what the future holds...

For now though, all is well. The doctor said any time he feels up to it, he can go back to school. (That made him moan!) So I'm thinking maybe he'll start half days the week after Thanksgiving.

Hope things just continue to improve for your girls.

Susan

jc3
11-15-2004, 02:17 PM
hi susan,
i'm so glad to hear bill is doing so good! You are very lucky. I wish i could say the same for nicole. She is okay if she is sitting on the coach or laying on the couch, but once i have to get her moving that's another story. She is still in alot of pain. She doesn't want to shower in fear of getting her back wet so we are having a tough time with her. She does not get up often and walk around saying that it hurts too much. I hope things get alittle better soon.
Tell bill to keep up the great progress!
jennifer
I am wondering how kays daughter is doing i haven't heard from her since they got home.

susannajon
11-15-2004, 10:01 PM
Hi Jennifer,

Sounds like your daughter needs you to kick her in the tail a little, and get her out of bed and walking a little. She counts on you to take the hard road, and play the "toughie". From what you've said in previous posts, she needs you to take control, and let her know she will be better off if she gets moving. I like to let my kid take the lead, but your little one sounds like she's waiting for you to take the upper hand and get her moving. Sounds to me like she's working the guilt factor just a tad... Just my two cents, and by all means trust your gut.

You've been right on target so far, but maybe you need to lead the bull by the horns and get her off that couch and moving a little. Did the doc recommend any PT?

Susanna

carolnj
11-16-2004, 07:20 AM
Jennifer, I'm sorry to hear Nicole is still having a hard time. It is just as hard, if not more so, on the mom so I really feel for you. Its not easy seeing our kids struggle. Have you had an opportunity tell the hospital, when they call, what is going on and see what they suggest? Or perhaps, and this is just something that popped into my head, maybe she's a bit traumatized by the experience and would benefit from talking to someone to work though her feelings about it? Just a thought. Hang in there and email me if you need a shoulder. Carol

Alison
11-16-2004, 07:54 AM
Hi jennifer

I think one of the hardest things after surgery is that you (I'm speaking from the patientee here) are scared. Your scared that you'll break something or damage something. Its strange in lots of ways, that you move differently, that you can't bend the right way. Its also hard to come out of the hospital having been in so much pain in the hospital and told to be "normal" and that things will go back to the way they were before.

A lot of things take time, and a lot of stuff sorted out in your head (so to speak), as time goes on you realise that you won't break something, that the pain is starting to go away, and that you don't need to be so "careful anymore"

A hard thing is also that no-one really "gets it" (I don't mean to sound harsh here), that unless the person has been through the surgery themselves they don't quite understand what its like. Then it gets more frustrating when they tell you "its ok, I understand"

Could you perhaps see through the hospital/the surgeon and see if she could be "teed" up with someone whose just had the surgery/a bit further along in recovery. Even if its just for a chat/swapping stories. I know that some hospitals organise it that former patients(if they want), talk to new patients about what its like, how you feel etc.

One of the things my Mum did was get me out of the house on a little "excursion" each day. It was for nothing major, sometimes a trip to my friends house, and often a walk down the street to buy a roll and an Ice-cream for lunch. It encouraged me to be up and about, because if I wanted it, I had to go and get it. It also helped keep my sanity in check and get "out in the fresh air.

With the shower thingy, could you perhaps replace the shower head with a hand held one. And for the moment have her sit down in the shower on a seat (if she isn't already). You can make the flow on the heads pretty low, and it means that Nicole has complete control over the shower, and how much gets wet.

I wish you the best of luck, you will get there

Alison

jc3
11-16-2004, 09:24 AM
hi susanna,
i read your post to my husband and he thinks you are right on target. Nicole i think does need a push. When she has to get up and makes a whole production out of it i sit there and wait until she's ready, which she drags the whole thing out. Then when she takes too long i call my husband to help and he makes her do it right away and she does it. So i think she is the type of kid who needs to be pushed.
thanks for all your great advise. I'll keep you updated on her progress.
jennifer

jc3
11-16-2004, 09:32 AM
thanks carol and alison for writing me. Everyones support and suggestions are so helpful. Alison, my shower does have the hose that you can take off and i do have a seat, but she is just so scared for water to go on her back at all. I gave her a shower with the hose and we just washed the front of her body but she made me be so careful not to get her back wet.
I am hoping today is a little better. Yesterday was a pretty good day and hopefully today will be too. I just have to get her up and around more.
i'll keep you all updated on her progress.
jennifer

Carmell
11-16-2004, 04:36 PM
Hi Jennifer,

You've had great advice from everyone else. I hope Nicole will soon be an easier patient - easier on you. It is so hard when they are miserable. You are doing great. Keep up the good work.

One thing about the shower... are her incisions covered with steri-strips? If so, its been long enough that some water should be fine (remember to ask the surgeon first, but still). As long as she isn't soaking in a bath or tub of water, she should be fine. The steri-strips will protect the incision from the little bit of water that would get on her. I'm sure her back is getting itchy, maybe. A little water to rinse off sounds like a good idea to me. Braydon is allowed to take a shower 5 days after surgery, as long as the water doesn't run on his back continuously. After 8 back surgeries, he's never had an infection. Maybe a good shower would help her spirits? I hope so.

Good luck and know we've been sending our best your way.

jc3
11-16-2004, 05:07 PM
hi carmell,
today was a pretty good day and nicole finally invited her friends over. They have been calling her everyday to come over and see her and everyday she says okay and then changes her mind later on and tells them maybe tomorrow. So finally she had them over and she seems to be having a good time with them. I hope it lifts her spirts and motivates her to get moving a little more. She still is not moving around alot and yes she has steri strips on her incision but still won't take a shower :( It will be a major milestone when she does. I will be so excited.
anyway thanks for writing it helps
jennifer

susannajon
11-16-2004, 08:04 PM
Hi Jennifer,

Sounds like you guys are turning the corner! It's amazing how quickly things change at the two week mark after major surgery. I am so glad Nicole felt up to a visit from her friends.

I think Alison was right on target recommending you guys pick something Nicole really wants to do outside the house. Maybe a shopping excursion or a special treat like ice cream or Starbucks will help. Anything to get her up and walking and out of the house! Fresh air and sunshine, no matter how trite that sounds, are such a healing influence. Remember, after childbirth, how much better you felt after a walk?

We finally settled on our “final five” last week, and made all our initial appointments. The list is Boachie (HSS), Neuwirth (Beth Israel), Lauerman (Georgetown), Roye (New York Presbyterian) and Moskovich (NYU). Our first appointment is Neuwirth on Friday! Wish us luck. Maybe one day when Nicole is feeling better we can meet for lunch in the city…

Susanna

jc3
11-16-2004, 10:26 PM
wow, those are all good choices! Let me know how the appointment with Neuwirth goes. A friend of mine's son had surgery by neuwirth and he did a great job. He initially had surgery with someone else and there was a problem and they chose neuwirth after and neuwirth fixed the problem. I haven't heard of Lauerman and Moskovich though. When nicole was first diagnosed with scoliosis about three years ago we tried to get an appointment with Roye because i was looking into the spine-core brace, which is a flexible brace and dr. royes office were using them, but the wait was too long and i was kind of in a rush so i saw one of his associates. Is the appointment this friday? You'll have to let me know all about it.
Nicole's visit with her friends went great she felt good. I can't imagine her going out yet, i think she is still in too much pain to do that. You also have to remember she had ribs removed too, so i think that hurts alittle more than the norm, but i'm not sure.
write again when you can
jennifer

mamakay
11-16-2004, 11:43 PM
Hello all,
Sounds like all our Nov 3rd surgery kids are progressing differently. Mostly bc they didn't have the exact things done.
I can't believe Bill is off the pain medicine already!!! Yes no bone graft can eliminate some of the recovery time, but it's still hard for him I'm sure.....good job!!

Now Jennifer, I think Nicole has come a long way from when she didn't even want to discuss the surgery. AND my God having ribs taken out, I can't imagine how that feels on along with the instrumentation. Stephanie has really not walked anywhere but to the bathroom and only up the stairs twice and down (for a total of 2 showers.)yea.
I am not pushing her to walk much bc she is really taking the tylenol and valium every 3-4 hours. Her pain seems not to be decressing and doped up her balance is really off.
Also it has been raining here the last week so it is very hard to find somewhere she can get out and walk to have a goal you know.
My first instinct is to help ease her pain and I know she will get up and walk when she feels stronger. Just forcing her to go upstairs everyotherday seems enough now.
Her hip graft and shoulder baldes give her alot of pain and she is not a cry baby but I see alot of saddness in her eyes and she is frustrated at asking and depending and embarrassed at us seeing her body half dresssed , she says all this.
Anyway that's what is going on here. I 'm sure Nichole is scared to walk(I'm scared for them to walk!!) anyway another thing, the shower deal: The water does not hurt at all and I use dial antibacterial (yellowish) liquid soap on her back. I just pump it on the stich areaor a washrag and squeeze over, and I promise it didn't hurt Ste, I don't know why but it really doesn't sting at all and it takes the itching away too not to mention cleans it. That is one thing I've told her must be done bc I'm scared as hell about infection and them going back in to clean it!! Good luck and wish us all strength!!
Mamakay

jc3
11-17-2004, 09:45 AM
hi kay
i'm glad you wrote. I was wondering how you guys were doing. I think bill is doing the best out of all of us. Nicole and stephanie seem to be moving almost at the same pace. Nicole has been having some pretty good days. She has been sleeping through the night for the past three days Yea! Has stephanie yet? I heard that the hip does give them alot of pain. I spoke to someone whose daughter had the surgery 1 week before us and they have alot of pain at the hip. Nicole finally let her friends come over yesterday, which was really good for us. I heard her laughing with them and having a good time. She needed that. Maybe it will motivate her to get moving more. I spoke to the hospital and told them how she is doing and they said she needs to be moving more. She does the stairs very good, which she does a few times a day because she lays on the couch downstairs and then when she wants to sit she comes to the couch upstairs with help of course and at night she goes back down. The stairs do not seem to bother her much at all. Getting up is hard and walking hurts.
Well everyone says the hard part is over, but the recovery is a slow process. When will stephanie start school work and when do you go for a check up at the dr? I'm glad ours is not until the 29th it will give her more time to recoup and be able to walk there.
keep in touch
jennifer
p.s. she still won't take a shower no matter what anyone tells her. I am going to have a party when she does :)

Carmell
11-17-2004, 12:21 PM
Just a quick note to say that I'm so proud of these kids! I can't imagine being in their shoes. Braydon has had several surgeries that involve bone cutting, etc. and each time the hospital staff will always say that bone surgery is one of the most painful procedures to recover from - I believe it! Jennifer - Nicoles sounds like she's doing great. The hospital wants her moving more because her bowels will end up stopping (again) and her muscles will begin to atrophy very soon if she doesn't keep moving. Pain or not, its important to move several times each day. I'm sure her ribs are more painful than anything. I know. She seems very fragile, but she isn't as fragile as you might think. Her body is very strong and the incisions, by now, should be closed and very much in place. The fusion material is already beginning to become solid. The rod placement will make sure of that. She has many more pluses on her side than she may realize. I hope she will continue to improve each day. Keep up the great work! And Stephanie and Bill are doing great too. I'm sure of that.

My best to all!
Carmell (Your resident cheerleader... LOL),

jc3
11-17-2004, 09:24 PM
hi carmell
thanks for the encouragement! Things are going well here. Nicole's day was fine not too many complaints. She is so much more comfortable sitting. Her tutor will be starting on Monday, they wanted to come this week but i though i'd give her one more week to rest and then she should really be up to it. She probably is now, but we'll wait. I was surprised nicole said her rib isn't bothering her. I hope that doesn't change we'll see. Wow, i didn't know all those things are going on already inside. I don't know how you've done this so many times. Poor braydon, he must be a real trooper! How is he doing?
Jennifer

Carmell
11-17-2004, 10:56 PM
Hi Jennifer,

I'm so glad to hear Nicole is doing better. I'm with you - the tutor can wait another week. Not a problem, I'm sure. I think the better she feels when she does start with her schoolwork, the better she'll do and the more active she will want to be. I'm glad her ribs aren't hurting her as much - great news.

Thanks for asking about Braydon. He is doing very well. He's going on a field trip with his class tomorrow (to watch a play/musical) so that's kind of exciting (something new to look forward to). He does well in school. He's not an overachiever, but that's okay too. As far as his surgeries - this is his only life. He doesn't know what its like to NOT have surgery every 6 months. He knows that all the other kids in school don't go to the doc like he does, but for him, its all in a day's work. He actually thinks having surgery is a glorified vacation from school! He also doesn't mind the attention he gets at the hospital. Our hospital doesn't bring routine meals at a scheduled time, instead, they have "room service". Between 7am and 7:30pm, when you get hungry, you call and order from the menu. That's his favorite part of staying in the hospital (even tho he doesn't eat much at all - calling for room service makes him feel special). His strength is what keeps me going. He's got an amazing attitude, because he's done this from the beginning. Nothing new here (for him).

You'll do great too. Keep up the good work. Keep up the positive reinforcement. She's making progress everyday. Keep encouraging her and you both will do fine. Take care!

mamakay
11-17-2004, 11:02 PM
Does any one know anything about overcompensatation of a curve as a result of surgery?
I have been looking at my daughters back since her surgery was complete and the incision seems to curve alot the other direction.
I have heard some stories how the Dr overcompensated and the curve is now more the opposite way.
I wonder if the back changes during the year of recovery or if this visual curve I am seeing is ok.
She hangs her head low and the neck area sticks out, does anyone think she is favoring sore muscles since she is in tears over the shoulderblade pain and it hurts to raise her arms.
The surgery was Nov 3 and it seems like the pain is still intense.
Also does anyone think her sleeping in a chair (leaning back on pillows somewhat) is bad for her recovery?
Laying in bed upsets her stomach she says.
Please let me know if someone else is experiencing or has some advice.. Thanks,Mamakay

jc3
11-18-2004, 08:10 AM
hi mamakay
i don't know about the over compensation thing sorry i can't help you with that whole thing, but i'm sure someone here will have some knowledge on that. Also, when do you see the dr? You probably go around the time that i do which is at the end of the month. I think you said that you didn't know what he got her curve down to either yet, is that right. I'm sure everything will be fine and it is just her still being sore. Nicole's incision does not look like a perfect straight line it has a little curve to it i think. I'll have to look at it again today. How is your daughter sleeping at night? Is she going all night or still waking up for pain med?
I hope she starts to show some improvement this week for you. Keep in touch and let me know how she is. I know this is tough and a slow recovery. Oh and about her sleeping sitting up i don't know see what some other people say. I know nicole is not comfortable on her bed so sleeps on the couch. Hey, whatever works at this point.
jennifer

jc3
11-18-2004, 08:14 AM
hi carmell
just wondering does braydon go through the same recovery process after each surgery? I mean like is he on the morphine pump, not able to get up easily, etc.. or is it less painful than when they have to initially put the rods in? Just curious. Hope all is well. We are now at the beginning of the start of week 3. I can't believe how fast this is going.
jennifer

Carmell
11-18-2004, 12:03 PM
About overcompensating... The only time I've heard about this as a possibility was when I attended a spine conference and a couple of the surgeons talked about it in their presentation. Their point was that some surgeons don't remember to consider overall body balance when performing the surgery. Instead, they try to get as straight a spine as possible. Sometimes straight is not the optimal goal. The goal of any scoliosis surgery should be to achieve a well-balanced spine, even if that means there is still some scoliosis remaining. The surgeons showed xrays of patients who had very straight spines, but the balance of the neck and pelvis was far worse than the pre-op/scoliosis xray. Maybe a call to the surgeon to ask if the post-op pics showed a good overall body balance (i.e., neck and pelvis are well-aligned) would be a good idea. Just a thought... Also, she may want to consider sleeping flat now that she's recovering. I can imagine the muscles in her neck would like a break from the tension and stress of being upright most of the time.

Jennifer - Braydon's expansion surgeries are not as invasive as the initial implant surgery was. He usually requires narcotic medication and anti-muscle spasms (Valium) meds for the first day or two post-op. By the third day, he's recovering nicely with little discomfort (as long as we keep on the Tylenol/Motrin schedule). He has already had a rod replacement for each of the two rods. The replacement surgeries are more extensive than the expansion surgeries, but less invasive than the implant. No chest tube this time, etc. He does use a PCA pump (last time with Dilaudid as the medication of choice) for about 2 days post-op. He may be having another replacement of both rods in one surgery in March - depends on how much he grows between now and then. He's already near the end of the lengthening sleeve on each rod.

Continued speedy recovery cyber-vibes to all the recent surgery patients!

mumof5
11-18-2004, 02:37 PM
Hi Mamakay,
I had a similar concern with Amber's neck. The point where the back becomes the neck seemed to stick out or be more pronounced. Her head didn't really seem to be out of alignment but we were both concerned about this 'lump'. The doctor said that it is mainly due to the fact that her back is now in a different position. He told us to have a good look at other people, and to remember that she is going to look different to what she did pre-op. I think to because she had lost a lot of weight it was more noticable. Now that she is gaining weight and is 6 months post-op it is not as obvious and it has never caused any other 'problems'.
Still ask your doctor about it though.
Best wishes.
Cheryl.

lrmb
11-18-2004, 09:41 PM
Hi everyone,

I'm so glad to read these posts and pick up the tips - and, not least, to hear that Nichole, Bill, and Ste are through and safely on the other side of surgery.

Question for Susanna: could you let us know how the five docs go? Especially Neuwirth, Roye, and Moskovich. I'm a few years off (adult) surgery yet, but chances are it will be in NY and I'd like to monitor a few years with the same doc prior to surgery.

If you feel weird writing about them online, maybe you could email me at lrmb24@hotmail.com

I'd be forever grateful!!
Thanks, everyone, for sharing your experiences in this forum.
~Laura

susannajon
11-19-2004, 10:06 PM
Of course! I will let you all know how the appointments go I am confident that all five of these guys are excellent surgeons, and it will be tough choice. I will certainly let you know what I think and why we ultimately pick one.

Susanna

lrmb
11-20-2004, 08:53 PM
Thanks! I would really appreciate that. Take care. ~Laura

jc3
11-22-2004, 09:18 PM
hi mamakay and bills mom
just writing to see how the kids are doing? Any new updates? Hope all is well, write and let me know how everything is going.

jennifer

susannajon
11-23-2004, 07:50 PM
Hi Jennifer, How's Nicole doing today? Neuwirth, one of the five surgeons we are considering, cancelled our appointment last Friday. He had emergency surgery. My daughter was so depressed. She has been looking forward to our adventure "in the city". After the cancellation she was really acting out and obviously depressed.

My daughter acts so grown up and in control when it comes to issues around the scoliosis. When we talk about surgery and doctors, she behaves in a calm and adult manner. Then, I get the calls from the teachers, saying she's not doing her homework, and seems very flip and unconcerned. In addition, she's really struggling with her spirituality (questioning her faith, the existence of a higher power, her place in the universe, etc.) I have to assume that this is normal behavior for someone facing major, potentially life changing surgery.

Anyhow I'd be curious to hear from other moms about their kids' behavior leading up to surgery.

Susanna

lrmb
11-23-2004, 10:17 PM
Hi Susanna,

Something you wrote really rang a bell with me. After a traumatic few months, I've now decided to wait for another few years before having the scoliosis surgery. But the whole experience - and the back pain I experienced - was really challenging for me in terms of my faith. I've dealt with other difficulties in life, but perhaps none so difficult as feeling like my prayers were for some reason going "unanswered" and not understanding why I would have to go through this. I think one of the worst things in life is really worrying about _yourself_, and are you really going to be okay in the end. Having come out the other end of the tunnel (so it feels!) I think I would have found it very useful to talk through these issues. One other thing that was also very useful to me was to have people emphasize the things that would continue after I had surgery; to realise that life goes on afterwards, and it's something you have to get through and over rather than an end point. Depending on your daughter's age, perhaps you could help her find something else to focus on or distract her a bit, by thinking about or planning (maybe a new hobby/learning a skill/talking about college or what sort of job she would like, etc). It's so easy to obsess about scoliosis and surgery! But for the ones in our charge, distraction might be some of the best help we can offer.

Take care and good luck. ~Laura

MaureenA
12-02-2004, 09:18 AM
Hi Mamakay,
I am new to this forum, but was glad to see some similarities with my daughter's surgery and yours. Laura had surgery on Nov 18, so we've been home for only one week. She is in a lot of pain and seems to have insomnia. I called the docotor today because her pain meds are gone (oxicodin) and they will give her tylenol only. I gave her TylenolPM last night and it didn't help at all. She is 16 years old and had a anterior/posterior entry for congenital kyphosis. She also had a rib removed for the fusion and is having pain at that site and where the chest tube was. Any suggestions? Is the pain and discomfort normal at this point? I think your daughter's recovery is a couple of weeks ahead of my daughters, so any imput would be really appreciated.

jc3
12-02-2004, 09:35 AM
hi maureen
i thought i'd post to you since my daughter is 14 and also had surgery the same day as mamakays daughter (nov 3) You are a few weeks behind and at 1 week at home my daughter was still in a considerable amount of pain. It does get better! I promise. We are now 4 weeks post op and she is doing so much better. I think each week she felt somewhat better, not by the day, but each week you will see a difference. I'd say after the 3rd week there was a big difference. The first week at home was tough on her. Just hang in there it really does get better. My daughter also had ribs removed as well.

jennifer

Carmell
12-02-2004, 11:28 AM
Hi Maureen,

I wanted to send my best wishes to you and your daughter for a continued smooth recovery. Hopefully each day will bring more good moments than bad. And soon, you will have more good days than bad.

I also wanted to mention that bone surgery is one of the most painful surgeries to recover from. I would call the doc back and see if they could give her something a bit stronger than just Tylenol for pain. When Braydon (age 9) has surgery, he comes home with Lortab (Tylenol with hydrocodone) to keep his pain manageable. There are several options for pain medications. Her surgery was very recent. I would hope the doc would consider helping her be a bit more comfortable.

Good luck and please keep us posted. (Maybe on another thread since this one is pretty long already.)

mamakay
12-02-2004, 03:04 PM
Hi Maureen,
I just read your mail here on your daughters surgery date and pain medicine.
I cannot believe she can make it with out any real pain drugs!!!
This is ridiculous, you should demand ,cry,lie and and do whatever to tell that Dr she IS in alot of pain and remind him of what all she had done!!Even bother the on call Dr.
Sometimes I think they test us to see if we are babies and can really do without.
I would post his name so other children will not have to go through unecessary suffering, this is the year 2004!
My dr said recovery can vary from 2 weeks to 6weeks..and this "surgery is like getting hit by a train". Now you get on that phone for your daughter and absolutely demand some medicine!!!! No wonder she has insomnia, she is hurting.
Let me know and don't give up!!!
kay

mamakay
12-02-2004, 03:21 PM
Carmell,
Thanks for the plastic surgeon advice, I think that is a good suggestion I just hate to keep exposing that area. Do those type wounds take a long time to heal as her surgeon said?
Did Brandon have something like that?
I am not worried about the cosmetic look of it as it is high on her neck, just keeping it healing asap and clean is my main concern now.
Did you have Brandons monitored by a plastic surgeon and the Dr ? What was your concern?
And now as she lays down she gets nausea and has been throwing up for 3 hours, Has any one had the nausea lasting this long? They say it is her medicine but she has not had any for 8 hours, I think she has the flu?

Maureen,
Another thing about the pain managment, to help you know how much pain your Laura is in tell her to tell you on a scale of 1-10. Yes the bone area is painful and discomfort is unevitable , so discomfort but NOT constant pain is what I would expect, just be there and baby her as much as possible, pillows compassion and maybe a small gift once in a while to let her know you know this is a big thing and you care.
Good luck, Kay

jc3
12-02-2004, 07:16 PM
hi kay
just wanted to know how steph is? Is she feeling any better. Hopefully it is the pain med's making her stomach sick, i hope she doesn't have the flu or a virus. That poor baby. Let us know how she is doing.

jennifer

MaureenA
12-02-2004, 07:25 PM
Thanks Mamakay, Carmell, and Jennifer!
We've had a tough day today, but your replys made such a difference. I called Laura's Doctor, and she was prescribed vicodin. The tylenol was not working. (Say a prayer it doesn't make her sick!) I told her about your responses and it was such a ray of light for her. She had a tutor here for about an hour today and it seemed to get her mind off the pain. In some ways, she seems to be doing fantastic. She showers by herself, goes up and down the stairs several times a day, and even sits at the table for meals. Once she gets a handle on the pain she should do great. Thanks again and I'm so glad your children are doing well.

jc3
12-02-2004, 07:34 PM
hi maureen
my nicole was on percocet and they just switched her to vicodin. I think the vicodin is not as addicting as the percocet and nicole has been doing fine on the vicodin. I'm sure you will see a difference from the tylenol. Nicole wanted to try tylenol last week but it didn't do the job so we went back on the pain meds. Hang in there things will get better real soon, but she sounds like she is doing excellent already!
we're all here for you
jennifer

mamakay
12-02-2004, 11:27 PM
Hi Jennifer,
Thanks for wishing Ste better.
I inserted a phynergram (poorr thing) and it made her sleep most of the day, then she woke up with a horrible headach (which scared me) so I called the Dr and he wasn't sure why she is sick, maybe the flu? So he prescriped some oral pills for her nuasea (sp?) and MORE antibiotics. He wants to see her next week to check on the incision not healing.
I still want to go to a wound specialist plastic surgeon as Carmell suggested, so I may call around and see if I can find someone here and at least talk to them.
I am happy for Nichole and Laura getting along so quickly and they had so much done!! Ribs and Laura anterior too.
Thankgoodness Laura got some pain medicine, I wish Ste could've taken the vicodin, she is still taking the Tylenol 3 but not as much.
Keep in touch, kay

Carmell
12-03-2004, 12:25 AM
Sorry to keep adding to this post, but I had another thought. Braydon has to take Valium for a few days post-op because of muscle spasms. "I" think his muscles spasm more than most because he's so lean. The muscles don't have much support. Maybe some of the discomfort is coming from muscle spasms... just a thought.

Kay - you listed several very good reasons TO BE SEEING a wound specialist. A plastic surgeon will be able to help the incision heal in the best manner, including being as narrow and flush with the skin as possible. It may take months, but it is a do-able thing. Braydon's "problem" incision a vertical incision is on his leg/ankle. His shoe and sock rubs it constantly keeping it more painful than it should be. Also, he is supposed to wear a brace on that leg at night. Not at all possible with the pain and discomfort of the incision/scar. The plastic surgeon/wound specialist is helping a great deal. He has been able to wear the brace about 4 nights in the past week - much better than not wearing one at all. Keep calling the docs and asking questions. You will be able to help her more by giving her answers from the docs who know her.

My best to all!

MaureenA
12-03-2004, 10:03 PM
Hi Kay,
I hope your daughter is feeling a bit better. That poor child. Laura had some stomach cramping the other night and it scared her a lot. Hang in there!
Thanks for all of your help with Laura. She had a good day today. She actually laughed at something I said! It must be the pain meds. She slept about 4 hours last night-a big improvement-so I'm hoping she'll sleep well tonight. I found out that the office contact that I called on Monday never told the Doctor about her pain!! When i called yesterday, he took care of it immediately, thank goodness. I can see how these kids really need as much help as they can get. Her ribs are feeling better too. Thanks for all your great advice! Hope you all have a restful night. Maureen

Peggy
12-21-2004, 01:38 PM
Maureen & Kay,
You guys are doing great! I think there should be a special award to all the moms (not leaving out dads..) of scoliosis kids. All the love and effort and caring that really pull these kids through. Being moms we always put ourselves down on the list. But thumbs up to moms everywhere dealing with all of this daily. I am so proud of you! Hang in there, stay positive and tough. Its been 8 months since my daughter had surgery. I check in here every so often to see how everyone is doing. Remembering all of you daily in my prayers of thanks for getting thru this ordeal and praying for the same result for all of you. Know that you make a world of difference to your kids. Love does conquer alot of things. Best of luck and continued successful recovery.