Rolling out of Bed

[Peggy]

Thanks Racin2win. I hope you are right!

[dapsbounce8]

I had five ribs removed, and I definately agree that it is the most painful part. My breathing was shallow and infrequent for a while because the muscles between your ribs are weaker without the supporting bones there. Breathing was also painful for a while - I got sharp pain when I took too deep a breath.

As far as medications, I would advise to take as little as you can. The switch from morphine to Tylenol with codine (or another painkiller) can make a big difference. As soon as I stopped the morphine I became more alert and more like myself again. Even taking the tylenol with codine, I had a lot of digestive issues so I went completely off of narcotic pain killers about two weeks after surgery.

Now I just take an occasional tylenol. The whole painkiller issue is probably the best advice I can give. I hope it helps.

[Peggy]

Thanks Charlotte. I don't know how many ribs they are going to remove for my daughter but I can imagine how painful that must be. I'm not very good on painkillers. I get sick to my stomach and out of it so I hope that my daughter isn't like that. I agree that the quicker she gets off the morphine the better. How long did it take for your breathing to feel better?

[racin2win]

Hi Peggy
While I was in the hospital, they had me do breathing exercises everyday, maybe 3-4 times each day. It was like this plastic container, with a little attachment (reminded you of a hose-tube-shape) and when I breathed in and out of it, it made this little ball go up and down. Once I was home, I did it for several weeks, at least 3 times a day, and I even did it whenever just because it was just a little container I could breathe into and out of even when I was laying down watching T.V., even though you should do it in more of a sit-up position. One reason this helped my breathing was b/c when I left the hospital, I still had a little bit of fluid on my lungs, and these exercises helped get rid of it. Maybe your daughter will have some little breathing exercises to do while she's in the hospital and at home too. Hope that helps

[Peggy]

Thanks Racin2win. I've done those breathing exercises before. I'm ready for anything I have to do to get my daughter better post surgery. I just want the day over with. She is still like in denial about the whole thing and doesn't want to come on this board or talk to anyone about it including me. She's like, "I don't want to know anything, let's just get it over with". She doesn't want to go on the tour either but I am taking her because I think it will help her fears after she gets thru with surgery. As the days get closer I am getting more panicky. Am I doing the right thing? Those kind of thoughts. Logically I know we have no choice. But in my heart I am scared. She is my little girl and I am making the decisions for her and I pray to God each day I am making the right one. This board has really helped me. Seeing all the success stories. I know it is hard but just let her get thru it and I will do everything I can to get her thru recovery. Please tell me you didn't hate your mom after the surgery!

[racin2win]

Hi again
Peggy, you are doing what any NORMAL, CARING, LOVING mother SHOULD do! My surgeons always told my mom at the hospital (jokingly) "You worry TOO much! You're always worrying!" and she replies "WHAT ELSE AM I SUPPOSED TO DO? ANY NORMAL MOTHER SHOULD WORRY ABOUT THEIR DAUGHTER'S SPINAL FUSION!" Here's a little bit of my story from a few months ago...and the reason my Mom KNEW this spinal fusion was the RIGHT thing to do for me...
-In May 2003, found out I even HAD scoliosis!
-June-met w/surgeon at hospital who we were recommended to
-Date set for August 7th
-Date later changed b/c of scheduling conflicts Reset for Aug. 28
-From June to August, my curves progressed so rapidly from 54-64 degrees, that Dr. ordered an MRI
-found something wrong w/my spinal cord that showed up on the MRI
-later referred to a neurosurgeon to see what he thought
-eventually found out I had a tethered spinal cord (which required surgery)
-Sept. 2, 2003-had lumbar laminectomy (correcting spinal cord)
-Date set later for Nov. 13 for the FUSION (finally)
-Curves did not progress anymore from Sept.-Nov. (right before the fusion)
-Nov. 13th-spinal fusion surgery
My mom said during the time of my curve progression and the MRI she had asked God to give her a sign that she was doing the right thing...w/having me go through with this...and when she saw the curve progression on the X-rays and the Dr.'s concern w/it, she knew it was the only way. (Now of course this is just my surgery's experiences) but my point is, if your daughter's curves are probably close to 50+, or if they're continually progressing, something needs to be done. Having this corrective surgery done while she's young will enable her when she's older to hopefully not have to worry about it in the future, or it getting worse, if all goes well. It's amazing how this surgery can positively affect the lives of those it's done on, b/c it can straighten out spines, reduces rib humps, etc. and I PRAY that your daughter gets through the surgery successfully b/c I want her to receive the same benefits I received from the surgery. Going back for that first check-up, and seeing the before and after x-rays are amazing...seeing the difference! Keep telling her to keep her chin up, and I hope she can get on here sometime to talk to someone b/c of course you know this is such a major surgery that has not only physical but emotional impacts on patients and their families, and as long as she is educated on this and keeps a positive attitude, leave the rest up to God and your surgeon...GOOD LUCK

[Peggy]

Thanks again. Your mom sounds like me. I think all the moms are alike when it comes to worrying about their children and doing the right thing. It is almost as bad emotionally for everyone as it is physically. I will continue to try and get my daughter to come to this board. You guys have helped me so much. I can't thank you enough. I never heard of a correcting spinal cord. Did the fusion fix this too?

[racin2win]

Hi again Peggy
The surgery to correct my spinal cord (before they did the fusion surgery) was called a lumbar laminectomy. Basically, my cord was "tethered" which means it was being held down tightly by some fat, etc. and wasn't free to move as a normal spinal cord should. I'm pretty sure it aids in the curvature of scoliosis, so having this tethered cord for who knows how long probably definitely aided in my scoliosis to begin with, even though they still call mine idiopathic scoliosis (no known cause.) It was a 2 hr. procedure, where basically he snipped away at some of the fat, etc., and if my cord bounced back w/a rubberband effect, it was "tethered." Well, it sure WAS! After that was corrected in Sept., my curves did not progress anymore from then till Nov. In Nov., had the fusion. So really, I had some surgery done there on my back even before the actual Nov. spinal fusion. Hope that helps.

[dapsbounce8]

Going back to the breathing issue. I used the same device as racin2win. Its called a speromater (well. thats how it sounds, I not sure if spelling is correct). My breathing took about a week to get back to normal rate and depth - thats how long I was in the hospital. After that I felt fine, but the pains from breathing in too deeply lasted about another two weeks. Now (almost two months later) I have no breathing difficulty at all.

Besides the speromater, the other thing that helped my breathing was walking. Not matter how much I didn't want to, my Dad made me get up and walk at least three times a day (after the doctor said it was okay and this physical therapist started me off). I think you are making the right decision by pushing your daughter to be prepared for surgery. Everyone needs a little motivation.

GOOD LUCK!!!

[Peggy]

Thanks Racin2win. Boy, two surgeries. You are a pro! It just amazes me what you kids went through. Charlotte were you walking 3 times a day in the hospital or was this after you got home? How did your dad motivate you without you hating him for it? I can just see my daughter's face when I make her do this stuff I will be the wicked mom of the west I'm sure but I'll do anything to make her better. Did the pain pills help with your rib/breathing pain at all?

[dapsbounce8]

I was walking three times a day in the hospital, but only after the fourth day or so. I'm not sure how my dad got me to do it - he was just very positive and encouraging. I was also pretty motivated myself because the nurses said walking would get my digestive system moving again.

After I got home I was so ready to go back to my normal life - I took naps for the first two days, but after that I was up and about all the time. It was hard to get myself to walk and do my physical therapy because two weeks after my surgery I was home alone all day. There was no one to tell me what to do, so that really had to come from within myself. I just kept telling myself that if I wanted to get better, I had to do what the doctor said.

Hope I've helped!

[paulasue2]

Getting my daughter up and out of bed was one of the more challenging aspects of all this. She was heavily drugged, in pain and connected to all sorts of things. Even the thought of getting her out of bed so early seemed to defy logic. "Mom instinct" wanted to shield her from anything that would hurt her more and getting out of bed the next day after such a massive surgery sure fell into that category in my mind! I really don't think I would have been able to stand by and let the PT and nurses get her up so early if I had not read in so many places that this is the best thing for her. It was one of the most painful parts of the whole thing for me to witness. How I eventually came to cope with the situation and what really proved effective for us was for me to just sort of "take a coffee break" when the physical therapist came to get her out of bed to sit and walk. They are trained professionals and are caring and compassionate but without the emotional involvement that a parent possesses. My daughter is very strong-willed and there were some times when I didn't think she would go along with it, but despite her protests, each time I returned after her PT had left, she had made huge advances in what she could do. They had more confidence in what she could do than either my daughter or I had. This is important to know.

At home, you just have to keep pointing out how much worse they feel if they have slept too much or hung around in one position too long. Peer pressure works wonders, but I suspect will be "too much of a good thing" in the very near future when she starts to feel better and tries to do too much. It is good to put as much routine in her day as possible at home - awaken, come to breakfast, rest, shower, get dressed, rest, watch TV or read, walk laps around the house, up and down stairs, rest, a little outing somewhere, etc. If left to her own devices, mine would completely mix up day and night, which wouldn't bother her too much, but sure makes the parents a bit grouchy!

[Peggy]

Thanks Charlotte. You sound like you have a great attitude. I think if I my daughter was alone after two weeks she would never get off the couch! Good for you!

Thanks PaulaSue. I can imagine how difficult it was watching Sarah in pain. You were smart to leave it up to the physical therapist. Guess you just have to take a deep breath and do whats best. My daughter is VERY strong willed too. It will be a battle but I have been harping on the same points (doing what the doctor says, pushing to get better) that I think she'll be ready for me getting tough with her. Not that she is going to like it.
Sounds like you have a good plan for keeping a good balance of rest and activity. Is her digestive system back to normal? Good Luck.

[paulasue2]

Hi, Peggy,

Her digestive system seems to be pretty much back to normal, but her stomach is still just a little bit bloated. Her appetite is not very great, but this is a common side effect of the pain medication I have been told, plus she certainly isn't doing much to burn a lot of calories! We are working our way out of the last of the pain meds, so I hope that resolves the appetite issue. How are you holding up?

Paula

[Peggy]

Hi Paula,
Thanks for letting me know about the showers. We go on a tour a few days before the surgery so I should find out about our hospital. Sounds like yours was very caring. I'm glad your daughter is getting back on tract. I'm sure when she stop the pain meds that will help immensely. Is she ready to be off them?
I'm hanging in there. Thanks for asking. It just seems like its constantly something...blood donation, nurse coming to give medication, consultations, pre-op tests next week, etc. Now he tells us he wants an MRI when he said he wasn't doing one a few days ago when we met with him As you remember (and are probably still having them..) you have days where you feel positive and got it together and then boom everything hits you and it is so overwhelming that I just fall apart. Reading postive stories like yours really helps though. Thanks, I appreciate it so much!