New here!

[SarahH]

I everyone... I thought a brief introduction was needed

My name is Sarah and my 11 year old son Trenton is scheduled for a posterior spinal fusion March 14th. His curve is 77%. I look forward to reading about everyones experiences, lending support, and receiving some for us. I am very nervous for this procedure, but do have faith that all will go well. I look forward to reading more at this great site!

[Carmell]

Hi Sarah - Welcome to the list.

Deciding on scoliosis surgery is never an easy choice. Trenton is still very young and has a lot of growth remaining in his spine. You didn't mention where the surgery will be in his back (thoracic or lumbar or cervical). If they are planning a posterior only fusion in multiple vertebrae, I would be asking lots of questions about future growth and whether or not the posterior only surgery is actually the best option. There are so many variables involved. Have you considered getting a second (or more) opinion from a different pediatric orthopedist? Do you know if his lung function is compromised because of the 77 degree curve? Does he have any other medical issues that would influence a scoliosis surgery? I'd love to hear more details about Trentons experiences. If you don't want to list details on this board, feel free to email me at boulderfam@hotmail.com

I look forward to getting to know you and Trenton better. My best to you!

[matt]

Welcome!

Hi Sarah! How are you guys doing? My name is Ross. I'm a 15 year old boy from SW Louisiana. I had the posterior spinal fusion done in September of last year; so I'm and little more than 4 months postop. If you have any questions, plz feel free to ask! Take care! Happy Mardi Gras from here in Louisiana! Ross

[SarahH]

Thank you, Carmell and Ross!

Trenton is also hearing impaired. His curve has worsend in the past few years and is only getting worse month by month. At 77 degrees our dr. at Childrens Hospital in Seattle believes that surgery is a must. I cant remember the exact name but they did an xray on the pelvis area to see the growth left, and it is closing that is why we opted for a posterior only surgery. He is 5'2" already. His curve is Thoracic. I have been doing alot of reading/researching and although I am very scared I look forward to the life ahead for Trenton.

Ross, how are you feeling? What was your first couple weeks home like? What did you do? Want to do? Or wish you had? We want to make Trentons recovery as good as possible so any advice or thought are much appreciated! Glad your doing well! Now 4 months post op? What are you doing? Or can you do?

[Carmell]

Hi Sarah,

Just wondering if Dr. Song is your ortho? If not, maybe you could get an opinion from him. I have heard very fabulous things about him.

I have a few suggestions about recovery... Get a sheepskin pad (or something similar) for him to lay on once he's home. Braydon said it was much better sleeping when he had something very soft to sleep on.

Also, don't allow anyone to pull on his arms. If you need to physically move him, do it with his body, not his arms.

Don't give him Motrin/ibuprofen or aspirin products before surgery (usually 1-2 weeks before) or after surgery. It can interfere with fusion.

Talk to the hospital and find out what the pain management plan will be BEFORE the surgery. That way you can know and write down when the medications are given and when the next dose is due. Pain is MUCH easier to control when pain meds are given on schedule, and the patient is not allowed to have the pain get out of control.

If he likes hand-held games, they can be good in the hospital. Braydon recieved a gameboy as a hospital gift which he liked very much. He wouldn't play with it for very long at any one time, but it was nice to have a change from videos or TV.

When he does get home, walking in short spurts will probably be good. The doc will tell you what limitations he will have physically.

Ask friends and/or family to come at various times - don't overload him with visitors all at once.

Some parents say their younger kids like to recover in a beanbag chair at home. Trenton is pretty tall, so that may be more work than its worth. A beanbag chair will mold to his body better than pillows on a bed or couch. And he can still be semi-upright to watch videos or play games.

Make sure his bowels are moving as soon as possible after surgery. GI problems are hard to solve sometimes. Walking and drinking enough fluids helps this more than anything. However, some kids need laxatives to keep them "moving".

Good luck and know we will be sending our best your way.

[matt]

Hey there Sarah! How are you guys doing? I'm feeling pretty good considering. I found out in December that one of the wires that loops around my spine is broken, so I might be looking at another surgery down the road. The first couple of weeks at home will be extremely rough. Just be prepared for. Start to buy food now, because you might not be able to leave for a while! At home I stayed in my recliner most of the time. The only time that I left the chair was to go to the bathroom and to go to the table (sometimes, when I felt like it) to eat. I am now 4 months post op. I am just being able to pick up things over, like 50 lbs. So that's a plus. I can't do alot of walking. So thats a bummer. Well, If you think of any questions, just ask! Take care and happy Mardi Gras! Ross

[Mary Lou]

Hi Sarah....

My 13 y.o. daughter had posterior fusion done eight weeks ago, so the experience is still pretty fresh. Carmell did a great job with her suggestions. I can't find much to add except:

Like Carmell said a second opinion or more is always a good idea.

Have you talked to your son's school yet, if not I would suggest talking to them and get the ball rolling before he returns to school because he will be back in school before you know it! Jamie returned to school half days at four weeks.


Keep visits short and if people are sick, suggest that they wait until they are better before visiting because you don't want him to get sick. Jamie said it hurt to sneeze or cough right after surgery.

If you have any other questions, feel free to ask. We are always here for you and you will be in our thoughts and prayers on the 14th of March.



Mary Lou

[SarahH]

Thank you so very much! All of the suggestions are great! I have this thread printed

The suggestions for comfort are great. And yes, he is all boy, he loves his game boy... lol There was an article in our local paper abotu kids and surgery and how hand held games have shown to calm kiddos before surgery more then meds do.

He will have a home tutor provided by the school for as long as needed.

His surgery date changed as of yesterday, to March 17th

[susannajon]

Hi Sarah,

My 13 year old daughter is having surgery March 9th, with Dr. Boachie at the Hospital for Special Surgery in NYC. I've gotten such wonderful advice from other moms on this site. I'll try to remember some items others might not have mentioned...

If his hair is long at all, consider getting a nice short cut before surgery. He may not be able to shower for a number of days, and his hair will get really knotty if it's got any length.

Don't be freaked out about how lousy he's going to look right after surgery. His face might be really swollen, and he's going to be miserable. The swelling is from the anesthesia and from being upside down for hours. Just remember, in a few days he'll look much better, and in a few weeks he's going to feel so much better. It doesn't last forever.

Bring a favorite stuffed animal with you to the hospital. Even though he's a "big" boy, I've heard that kids find them very comforting to have something familiar from home those first few days after surgery.

On or about day three, after the catheter comes out, will be your first trip to the bathroom. It is very possible that he will be constipated and/or won't be able to wipe himself with all the tubes and IVs and such. You might want to talk about it before hand so he's prepared, and ask him who should go in the bathroom with him to help if needed. He'll probably be mortified but at least he'll be prepared.

It is VERY OKAY to take as much drugs as he needs! Hit that morphine button: he won't be come addicted! It is your job to make sure he's getting enough help with the pain. If he's not, it's OK to fuss until the hospital listens. Kids who are getting adequate pain relief sleep better and heal faster.

Expect him to sleep A LOT at the hospital. His body is going to need it. Try to establish a visitor plan in advance so people aren't constantly drifting in and out. He'll be better able to deal with people (other than mom and dad) day three or later, and after he's just had some pain meds. Make sure you are clear with people that they should not come if they even suspect they have a cold or a bug. The last thing he needs is to be coughing, sneezing, or throwing up. Sometimes people just don't think before they visit.

As mom's we want to sooth away the pain, rub the back, stroke the head, etc. Don't be upset if he doesn't want you touching him. Some kids get hyper-sensitive after surgery.

Don't forget to take care of yourself. Have a respite plan in place before surgery. You will need to sleep in a real bed once in a while, take a walk, take a shower, get some non-hospital food, etc. Plan to have someone else at the hospital with you so you can alternate, and come home ready to be a caregiver, not exhausted. SAme goes for when you get home. Take some time for yourself every day.

When you come home, some kids are more comfortable in a recliner or on a sofa than they are in their bed. Let him sleep wherever he wants.

He might not want to pull a t-shirt over his head as it might hurt or catch on the bandages. I few pairs of nice soft button up pajamas will come in handy.

At home: Keep visitors to a minimum at first. He'll need a LOT of rest, and again, you don't want him catching a cold or flu bug.

He might feel a little unsteady getting into and out of the bath tub or shower for a while, so he might need a little help. Get him a shower seat, or even a plastic garden chair so he can sit. He'll need a hand held shower.

Take some pictures, before surgery, right after surgery, after the bandages come off, and later when he's healed. It will let you see the wonderful progress he's made, and will allow him to see "what's going on back there".

Well, that about covers it, plus everything the other moms have said. Good luck with everything.

Susanna

[Mary Lou]

Wow! It's nice to know others actually listen to what we say here! Susanna, sounds like you are well prepared and that is some of the best advice I can give.

Sarah,
Please know that every kids is different and with you having a son, the bathroom issues will be totally different. Have you discussed his father, or uncle or someone be available to help with to the bathroom in the hospital and with showering at home? He may not care in the hospital but trust me, their modesty returns very quickly once they are home. It is a good suggestion to have the handheld shower, etc. but I didn't get one for my daughter and she didn't need one. We did find that she used the built in seat in our shower and it worked out very well. I didn't think Jamie would be able to lift her arms over her head, but surprisingly she started wearing her own clothes as soon as the catheter came out. She seemed to be more comfortable with clothes on instead of the hospital gowns and it was much easier than having to deal with the IV's and trying to put a robe on when walking the halls and going to p.t. I personally gave Jamie bird baths every day in the hospital and by the time she came home she was able to do it herself. She wasn't allowed to shower until day 10 after surgery. As for the hair, I made sure to run a wet wash cloth over her hair daily and also asked the nurses to wash her hair for us before she left the hospital and we managed to buy ourselves a few days until she could shower. As for taking picture--you will be surprised at the before and after pictures! I also took pictures of Jamie throughout her recovery, starting with the night of surgery because she didn't remember much about that day. She enjoyed taking the pictures to school to show everyone all the lines coming out of her and also pictures of her incision because people are curious, but she doesn't want to show everyone her back.

Mary Lou
Mary Lou

[susannajon]

Mary Lou,

I learn a little bit every time I log on. I am feeling very at peace and very prepared right now about the whole thing thanks to you and the other moms!

Susanna

[SarahH]

Thank you ladies! I really feel very prepared, it is just those little things.... that someone who has been through can offer. Thank you truly from the bottom of my heart! It is so nice to knwo that I am not alone.