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Gwen
07-05-2009, 12:32 PM
Hi everyone. This board has been such a wonderful source of information and support for me this past year. I have yet to post but felt since my daughter Becca is now home from surgery four days ago it was time to share my story and provide information to others that are now in the position I had been.

I first noticed Becca's curve in May of 2008 and had her X-rayed in June. In July we met with Dr. Paul Sponseller at Hopkins. Her curve was around 50 degrees and we decided to wait and observe and then return for another Xray in March 2009. Her curve was then 55 degrees so we felt pretty confident our best move was the surgery. Most importantly Becca was up for it (her feeling was it was necessary although she was bummed out at home much it might screw up her summer fun). At the end of June we went for the pre-op visit and at this point her curve was 61 degrees, a 6 degree increase in 12 weeks. This past Wednesday was the surgery at Hopkins. Dr. Sponseller and his wonderful team had the surgery done in just under four hours. The nurse called my husband hourly with an update. Because there was a shortage of beds (or probably nurses) they put Becca in the pediatric ICU the first night. That's a tough place to be as no one sleeps there. The lights are always on and there are lots of beeping monitors. By Thursday morning at 11 she was moved to the adolescent ward into a shared room. Within an hour the physical therapist arrived and had Becca up and walking. We were dismissed from the hospital around 5:30 on Friday, less than 48 hours post op. Becca was pretty determined to go home and although I was nervous about being her home nurse was also looking forward to being home.

As I write this I am sitting in her room watching her sleep. She is on oxycodone and tylenol and is still working through the pain. She gets up every couple of hours and walks around a bit. She has very little appetite and has been pretty much eating only watermelon and ice cream. But she is sucking down lots of water.

The most amazing thing about this whole ordeal is that when Becca's sister and I stood her up for the first time we all looked at each other eye to eye. Becca was 5 feet 2.5 inches prior to surgery and although I haven't officially measured her my sense is she's about 5 feet 4 or 5 feet 4.5 inches. Amazing. And she has this beautiful straight back.

This is major surgery but relatively low risk. The surgery itself has apparently come leaps and bounds from what patients had to endure even 20 years ago. Becca's goal is to be able to comforatably sit through the Harry Potter movie that hits theatres July 14. My goal is to have her feeling great on her 15th birthday which is July 21.

I hope my post is helpful and I wish all the readers great things in their journey to help themselves or their child.

Pooka1
07-05-2009, 12:42 PM
Wow congratulations on getting through that.

Less than 48 hours in the hospital? How many levels did she have fused if I might ask?

I read at least one testimonial of a kid who was in the hospital three days. So I find that remarkable.

LindaRacine
07-05-2009, 01:18 PM
We were dismissed from the hospital around 5:30 on Friday, less than 48 hours post op.
OMG! That's amazing, and scary. It's great when the patient and patient's family wants it, but would be pretty horrible for some. Congratulations on such a smooth ride!

-Linda

titaniumed
07-05-2009, 03:29 PM
Wow, any sooner and it would be an outpatient surgery!

Age is a big factor with recovery.

If scoli surgery was done in utero, there would be no recovery at all. LOL

Eating on Oxy is tough. Try making protein smoothies, with protein powder,milk,banana,blueberries,raspberries,strawbe rries,almonds,yogurt. They taste great,sooth the throat and are good for you. Buy frozen, its easier.

Ed

Gwen
07-05-2009, 03:46 PM
I emailed her doctor after you asked me the question about how many levels she was fused. He answered and said eleven. Wow.

She just ate some ramen noodles, half a pudding, and watermelon. And she did all that downstairs. She's back in bed asleep having taken another oxy.

Once she actually cares about anything other than working through her pain she'll be thrilled to find out she was such a speedy hospital stay and therefore re-enforcing her Type A mentality. ;)

Pooka1
07-05-2009, 04:01 PM
I emailed her doctor after you asked me the question about how many levels she was fused. He answered and said eleven. Wow.

She just ate some ramen noodles, half a pudding, and watermelon. And she did all that downstairs. She's back in bed asleep having taken another oxy.

Once she actually cares about anything other than working through her pain she'll be thrilled to find out she was such a speedy hospital stay and therefore re-enforcing her Type A mentality. ;)

Well that is amazing.

My kid was not allowed to eat or drink anything (including ice chips) until her stomach woke up (on the third day) and still had the catheter in when your daughter was released.

I don't understand how she can eat so much so soon without serious consequences. Is she getting bloated?

Did they say anything about whether they usually release kids after two days or what about your daughter's case made that doable?

Pooka1
07-05-2009, 04:05 PM
Just wanted to add...

I have helped one kid through this and have another one deck who might need this surgery.

If you ask me if after helping the one kid if I would choose to bring the other kid home after two days, I would not choose that though I think it is technically doable with help. The reason is you need round the clock care still at two days and I would not be able to do that (turning every two hours, etc.) alone.

Are you exhausted? Do you have help?

lapieper
07-05-2009, 04:20 PM
Becca, you go girl! What an amazing testimony to your strength and determination. Keep us posted as you heal. I have hope for us old and young codgers, both those who have had and not yet had surgery.

YOU ROCK!
Les

titaniumed
07-05-2009, 04:54 PM
Gwen

Pre and post surgical nutrition is important. After all, healing requires a few things. Here are a few links.

http://www.thedietchannel.com/Post-Surgical-Nutrition-Speed-Your-Healing-With-A-Good-Diet-and-Supplement-Plan.htm

http://www.spineuniverse.com/displayarticle.php/article1867.html

Sharon

Eating after an Illus is very delicate. I know, I was there. I guess that's why I'm posting this surgical diet info.

Illus or not, it still is something that's critical.

Gwen, you can always call your surgeon about diet info. Nurses will also come out to the house, it should be covered by your insurance. Hang in there, and remember that with the resilience of younger patients, its still very early for your daughter to be at home.

Uninterrupted sleep is important also. So important that I think I will take a nap, right now LOL
Ed

Gwen
07-05-2009, 07:58 PM
Ed, great links on nutrition. Thank you for that. And it's funny, on her own Becca asked for a smoothie an hour ago. She sucked down about four ounes of an organic yogurt, V8 juice and blueberry smoothie. After reading your links it occured to me to add some fiber next time.

Sharon, she hasn't complained about bloating as the actual amount she has been eating has been pretty small. Yeah, it is pretty scary having her home but my husband and I were both commenting on how much more restful home is than the hospital. And Dr. Sponseller emailed me back within thirty minutes today when I asked about the number of levels she had had fused. So I know I have folks to turn to for help. My next big hurdle will be timing a shower for Becca. She tends to sweat a lot when sleeping and is really sick of feeling so dirty. I'm assuming I leave the bandages on while showering and then put on fresh ones when she's done. I will call the dr's office tomorow to figure this out. If you have any suggestions I'm up for them!

babachi
07-05-2009, 10:17 PM
Sharon,
Jesse ate grilled cheese with bacon at least buy day 3. I agree, I would not have wanted him home that early!!

JenniferG
07-06-2009, 04:23 AM
You have a good point there Gwen. How much more restful it is at home than the hospital. Sleep is important!

All the best for a smooth recovery for Becca!

Pooka1
07-06-2009, 07:19 AM
I am trying to remember... I think the IV pain meds came out on the second day. I don't believe anyone could go home on those or needing those.

So I think once that comes out, it's mainly non-specialized care so a kid could come home. It's just that it's around the clock and I wouldn't have been able to do it by myself. I mean the nurses work in shifts for a reason.

In re eating, my kid's stomach sounds returned on the third day and she was allowed to eat and drink. Still, she didn't want much for several days. Mainly a little liquid. She was in the hospital 5 days and only ate a little breakfast on the day she left.

She had zero bloating because of the surgeon's protocol.

asccbodypro
07-06-2009, 10:53 AM
Gwen,

Congratulations on your daughters successful surgery. I am 37 and had mine done 2 1/2 months ago. Younger people recover so much faster it's amazing. I was diagnosed when I was in 6th grade and they wanted to do surgery than but my parents were to afraid to make the decision and thank god they didn't. Due to technology back than I probably would have been worse of now. I wore the Boston brace and it stabalized the curve through my growth spurts as a young teen but then I really faught against wearing it so it never really helped as much as it could have I suppose. I really didn't have any trouble until 5 years ago. I am (was) a personal trainer and bodybuilder and I was 3 weeks away from a competition and my first of 3 discs herniated. I just went down hill from there.

I had a baby last year and it was only then that we realized how bad my curve had gotten. The lumbar progressed to 50 degrees but I also had a 5 centimeter shift of the plumb line AND my head sits on the top of my spine crooked. It's looks like it fell of to the side. I ended un with a c-section due to the curve moving my uterus way off to the side and the baby wasn't over my birth canal. I finally realized that I had to do something. I spent all of 2008 working with a chiropractor to help with the pain and get me moving around again. I couldn't even walk while holding the baby my back was so bad. The chiropractor helped but it just managed the pain and I needed a fix!

Making the decision to have surgery was a difficuly one for me. I have 3 son's 15, 10 and 17 months. To not be able to pick up the baby is so difficult and heart breaking. Everytime I looked at him when I came home from the hospital I cried because all I wanted to do was hold him. As a mom yourself I'm sure you can understand! It's better now because he can sit on my lap and I can read to him and we sing and play little games. My mother in law does the bulk of caring for him.

We have been very fortunate that we have lots of help from family. My mother in law has been here since my surgery to take care of the kids and my parents have been here to help as well. My mother in law has promised to stay as long as it takes for me to be able to lift the baby again. The doctor said 6 months but we'll see. My husband is in the Coast Guard so that's why we need so much help. They have also been great allowing him the time at home. For the first month after my surgery he was home and than he will have another month off soon in two more weeks.

Sorry to have rambled on so long but your story caught my eye. You made a wonderful decision for your daughter. Wearing a brace can be defficult for some kids, I was one of those kids. I hated it and it made me very self conscious. I am looking forward to healing now though and getting my life back in order. It's one year of inconvience and hopefully things will be back to normal. The pain I had prior to surgery is already gone. I do 30 minutes of cardio everyday. I do tire quickly but I get stronger everyday.

I wish your daughter continued success and hope her recovery goes by quickly for her so she can get back to her fun! Take care and good luck to you as well!

Gwen
07-07-2009, 10:16 AM
Wow Susan. Thanks so much for sharing your story. You certainly have a lot on your plate but thankfully have a good support system. And you were obviously is good shape prior to surgery which I am sure is helping. Being home with Becca these last few days and tending to her every need reminds me so much of being home with a newborn. Simulatneously wanting to hold the baby while also trying to recover from childbirth. You have had that and major surgery all in a relatively short time. I agree... a year of misery for a life time peace is a good thing.

Becca's curve was diagnoesed just as she turned 14 so the dr didn't think bracing was a good option. We were actually relieved since yeah... bracing can be quite difficult for a teenager. Once we realized her curve was over 50 degree the surgery decision became quite easy to make.

She's still in so much pain but is trying to use tylenol more than the narcotics. Her focus today is trying to go to the bathroom and get rid of the bloating. I know that will help a great deal. She has been eating smooties which I have put metamucil in. She's had some stool softeners and this morning I gave her a laxitive. Something's gotta work!

asccbodypro
07-07-2009, 11:06 AM
Gwen,

Yes, you made a good decision not bracing Becca. I was diagnosed as a young teen and it really damamged my self esteem. Also, as you said Becca's curve was progressing rapidly. It would seem you definitely made the best choice for her:O)

You mentioned her bloating. I am assuming the smoothies that you are giving her have lots of fruit in them but the more fruit through the day that she can eat the better for her. That's really all that settled well in my stomach post surgery.

Also, peanut butter and jelly sandwhiches made with double high fiber bread and a peanut butter i buy at Walmart called Naturally More. It's got both omega 3 and 6 oil and flax seed oil and flax seeds and also wheat germ. It also has 10 grams of protein as well as 2 grams of fiber. Anywhere I could get the fiber I did:O) Also, lots of green veggies if she will eat them. I also took Phillips Milk of Magnesia(?spelling)...which I still take daily only at night just to be on the safe side. With all the meds I don't want to start having a problem. I have always had a tone of trouble in that department and I think the surgery has helped me there:O)

I can't imagine having to watch your child recover from this surgery. My thoughts are with you and your husband as well as Becca. My parents didn't come down until I came home from the hospital and my mother was a nervous wreck and in tears when she saw me and I'm 37 lol. I had lost a ton of weight in the hospital and still continue to loose weight. I have lost 30 pounds total so far. We had my husbands mother here with the kids the weeks that my surgery took place. I just new my mother would be a nervous wreck wanting to be at the hospital but having to be home with the kids. My husband made it very clear that he wasn't sharing visiting time. Only one night my mother in law came instead of my husband because of a hockey game for my son that I insisted on him going to.

I'm sure you will be relieved when Becca is on her feet again and back to being a normal teenager! Tell her I am envious of her quicker recovery time than what I am going through :O) Honestly though, aside of being tired now I have less pain than prior to surgery even though I have pain it's a different kind.....healing from surgery kind.

Good luck and if you have any questions that maybe I can answer for you just let me know. God bless! Tell Becca I said Good luck!!!!

jrnyc
07-07-2009, 01:02 PM
Susan...interesting...my scoli pain was manageable til i herniated discs at work 5 years ago, then all heck broke loose w/pain!

Gwen...i think it is great that your daughter had the surgery now...she will become pain free & have a wonderful life...
waiting can present problems of having surgery when older...i am proof of that...as i struggle with decision...

thoughts & prayers are with you....
best of luck
jess

Pooka1
07-10-2009, 11:38 AM
Her focus today is trying to go to the bathroom and get rid of the bloating. I know that will help a great deal. She has been eating smooties which I have put metamucil in. She's had some stool softeners and this morning I gave her a laxitive. Something's gotta work!

I'm just curious... didn't your surgeon warn you not to let her eat/drink anything until the gut sounds return?

Based just on my daughter, that didn't happen until some time on Day 3 whereas you were released after two days.

Our surgeon was extremely strict about this because he considers bloating a set back.

And indeed my daughter had no bloating.

As far as I can tell, the evidence is in. Nobody is guessing if kids will develop bloating if they eat/drink too early... they will. I don't know why all surgeons aren't strict about this. Kids have enough pain associated with their backs. The last thing they need is the pain from bloating. Based only on the testimonials here, I agree that it is a major set back in the recovery.

Jazzy'smom
07-12-2009, 01:25 AM
WOW! I can't believe your daughter went home in 2 days. My daughter was still vomiting every time she tried to eat. On the 4th day her blood count was so low she needed a blood transfusion. I guess everyone is different but I'm glad they kept my daughter for 5 days. Her surgery was July, 6th. Good luck and thanks for sharing your story

Pooka1
07-12-2009, 06:35 AM
WOW! I can't believe your daughter went home in 2 days. My daughter was still vomiting every time she tried to eat. On the 4th day her blood count was so low she needed a blood transfusion. I guess everyone is different but I'm glad they kept my daughter for 5 days. Her surgery was July, 6th. Good luck and thanks for sharing your story

Just curious... when did the surgeon allow her to start eating/drinking?

Jazzy'smom
07-12-2009, 09:51 PM
The second day she was allowed liquids, The third day jello,pudding and stuff like that. The 4th day she was allowed solids. She's eating petty good now. Friut , toast, chicken noodle soup, Chicken and grahams crackers. Nothing heavy yet.

pmsmom
07-28-2009, 12:19 PM
What recipes are you all using for the smoothies?