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justan's mom
02-18-2009, 07:27 PM
Hi! My name is Laurie and I have a son, Justan who will be 16 in June. I also have 2 other sons, Chris (13) and Brayden (9). I am a single mom in New Brunswick, Canada.

Justan was diagnosed in 2003 with scoliosis. He's been monitored by his orthopedic surgeon each year until about 1 1/2 years ago when his appointments were stepped up to every 6 months. On January 29, we were told that Justan will require surgery. His top curve is 50+ degrees and the bottom is 40+. I'm just getting used to the scoliosis terminology, so please bear with me...

Justan has a tenative date for surgery on June 26. They cannot absolutely confirm this date though, until one month prior to surgery. We are both scared and pretty unprepared.

I have asked for time off work to be with him during surgery, his hospital stay, and while he recovers at home. Any idea how much time until Justan is ok to stay alone, prepare simple meals, etc. without mom around? I have asked for 6-8 weeks off, but I'm not sure if I'm off the mark here or not?

Since we're on our own on this, I need to be prepared for his arrival home before we head into surgery. What devices/gadgets/etc. did you find helpful? Which were a waste of money? How did your teen occupy his time while he recovered? When will he be able to climb stairs? He'll have to climb 4 or 5 stairs to get up onto our deck at home when he gets out of the hospital...will this be hard for him?

Gee, I'm sorry to bombard you with sooo many questions. For each one I type, I can come up with 5 more....

Anyhow, I've been reading your posts, and find them very helpful. I look forward to getting to know you guys, and hope that we can support each other during this very trying time....

Laurie & Justan

Snoopy
02-18-2009, 08:41 PM
Welcome! You are not bombarding us with questions. We are here to help.

I'll try to answer some of your questions, but please remember, every surgery is different and so is every child's recovery. My daughter, for example, has a very high tolerance for pain, so her recovery might not be typical.

I was home with Jamie full-time for her recovery, but 6-8 weeks sounds reasonable for you to be home. You might find you don't need that much time. Jamie was back in Middle School part-time at about 4 weeks, I think and was back in school full-time by 6 weeks.

We didn't buy any gadgets for her recovery. We did find the built in shower seat was a blessing and most people will suggest using a shower chair or even a lawn chair for the first week or two after surgery. With you having a son, you'll need to think about all the bathroom issues. In the hospital, I don't think Justan will care about his mom helping him, but trust me, it doesn't take long for their modesty to come back.

Jamie spent most of her time watching TV and later worked on homework.

Your son should be fine with stairs. Because we live in a two-story house, Jamie had to walk up and down a full flight of stairs before leaving the hospital. Make sure to walk behind Justan while going up the steps and probably walk in front of him when coming down the steps. We brought Jamie's bed downstairs so she didn't have to do steps other than to get a shower. Having her bed downstairs made it easier for her to lie down whenever she wanted/needed to rest without being away from the family activities.

You'll be surprised at how quickly Justan will recover. Don't hesitate to ask any questions that you have. We are here to help.

Mary Lou

scoliboymom
02-18-2009, 09:20 PM
Laurie,

Mary Lou is right that everyone is very different, but good to be prepared for anything. ANd I found the more stories I read about the better prepared I felt.

The only gadget we got was a long handled shoe horn to help Patrick slip on his shoes (laces never get untied, sigh). The other thing we got was a body pillow, very highly recommended by Patrick. Both are still used to this day nearly two years later, but only because he likes using them. Also lots of regular pillows to lean against on the backs of chairs/sofas.

We didn't do the shower seat and were fine. I stayed in the bathroom when he showered, he wore bathing trunks. In the hospital the nurses took care of the "private" things when necessary.

ask any questions you have. There are lots of us here who are happy to help in any way we can

Ramona

justan's mom
02-19-2009, 07:24 AM
Thanks guys! I feel a little better already. Did anyone use a raised toilet seat? I found out yesterday that our local Red Cross will donate any aids we will need. We will, of course, make a donation when we return things, but there is no charge for borrowing these things so long as we have a doctor's requistion.

The lady at the office suggested a raised toilet seat with arms, a grab rail for the side of his bead, a shower bench, and a handle on the side of the tub to help in and out of the shower. She does not, however, have any experience with scoliosis, and is just going by other patients who have had back injuries. I'm not sure if our list is exagerated, or incomplete? She didn't mention the shoe horn (I would guess this item isn't overly expensive?) and I would prefer to purchase the body pillow you mentioned, so he can keep it.

I'm going to move Justan's bed to our computer room. He'll only have to travel 10 feet or so to the bathroom (and no stairs!). That way, if he wants to be with me and his brothers, he can come into the living room, and if he needs a nap, he has the privacy of a room...

Justan visits with his father on a regular basis. His dad lives in a three story house with several (I think 4) flights of stairs throughout the house. I wonder how long until he can resume visiting with him? I find I'm becoming very protective of Justan these days, and just want to keep him home with me....forever!!!

The surgeon told me Justan will have several tubes and wires when he comes out of surgery. I should have asked then what he would have, but to tell you the truth, I was overwhelmed by the fact of surgery, and didn't think to ask alot of the questions I have come up with since....I expect an I.V., a catheter, but what else should I be prepared for?

Justan is a wrestler. He is on the high school team and is becoming very good at it. Would you expect after the recovery period, will he ever wrestle again? This is a very difficult area for Justan to talk about. His coach already offered him the role of manager of the team for next season, but what about after that?

Oh dear....another set of questions....but thanks so much for your help. It means more to me than you will ever know....

Laurie & Justan

babachi
02-19-2009, 02:53 PM
Hi Laurie and Justan,

Welcome. You'll find lots of suggestions here. We may not be able to answer your questions, but will be able to tell you how it was for our children. When I first joined, I went back and read all sorts of posts and "followed" surgeries after the fact.

My son Jesse(16) was fused T2-L1 in December. He had a 68* lower curve and 42* upper curve. He was back to school part time at 4 weeks post op and full time at 5 weeks, so your 6-8 weeks should be plenty. By 5 weeks he was able to fend for himself around the kitchen.

We have about 6 stairs to get into my house and another full flight to Jesse's room. They had him using stairs in the hospital before discharge. The PT people will give you suggestions, but as Mary Lou said, behind him going up and in front going down. Don't sweat the stairs!

I bought no gadgets for Jesse. Like Ramona mentioned, PILLOWS, and lots of them. Jesse used at least 4. They help with positioning and comfort. You'll quickly learn in the hospital different ways to use them!:) We also have a recliner which Jesse slept on quite a bit.

In my home we have a built in shower seat, so as ppl mentioned a chair seat will be helpful. We also have a chair height toilet. Jesse did need help on and off the toilet, so a raised toiled seat could be helpful. A handheld shower wand worked wonders.

I hadn't even thought about having to help Jesse in the shower or bathroom until I got on this forum. Modesty will go out the window in the hospital. Be prepared to help pulling pants/boxers/underpants up and down (after the catheter comes out) and when Justan needs to use the toilet. I also bought disposable gloves and flushable wipes. (Yes, he needed help there. There are actually a couple of threads about that topic)

Jesse also needed help in the shower. He couldn't get his dressing wet, so he needed help with shampooing. (This is where the handheld worked great and also because he was sitting) Pretty quickly he was able to use the shower and toilet on his own.

Jesse came out of surgery with an iv, catheter, and wires for reading his vitals, bp, pulse, oxygen. I didn't know until I just before I saw him in ICU that his face would be puffy from being on his stomach. I wasn't prepared for the size of the bandage.

You may want to have a conversation with your surgeon about the wrestling soon. We were told no more contact sports, ever. Justan may need time to comprehend and digest that, if he has those restrictions.

Fire away all the questions you have. We're here to help.
Bethany

Beckymk
02-19-2009, 03:12 PM
Welcome. I won't be able to answer much as we haven't gone through surgery yet. Soon though.

I do know that in our case, basically any sports is off for at least 3 - 6 months. Definitely 3. I'm not sure about wrestling. I know we were told the only things my daughter couldn't go back to was gymnastics or football. Those were the only 2 things I was told were forever out. This was way back when though.

They did tell us she could probably go back to cheerleading in the fall though, this was when the surgery was tentatively scheduled for Feb., so 6 months. My daughter is taking off sports completely though and going to go more toward the drama side. Anyway, I think it's at least a year for full recovery.

I know one thing we are also thinking of is driving. I don't know if your son has his license yet. My DD will be having surgery the day before her 15th birthday, so basically since she can't twist (i.e. turning to look backwards) for up to 3 months (possibly 6), she won't even be able to get her permit & take Driver's Ed. Never thought of it until recently.

I would also suggest reading old threads, I know that has helped me a lot. I also am interested in the info here. I think your 6-8 weeks is a good timeframe. I know we were told 4 - 6 weeks off of school, so it seems like 6 weeks tends to be the magic number for most things, just from what I have read. There will still be restrictions but it seems like by 6 weeks the big hurdles are over with in general.

pmsmom
02-19-2009, 04:45 PM
Welcome, Laurie & Justan.

The folks on this forum are very helpful, and most importantly, very caring.

You have come to the right place! We are all here for each other!

Marian

Snoopy
02-19-2009, 05:09 PM
I'm going to move Justan's bed to our computer room. He'll only have to travel 10 feet or so to the bathroom (and no stairs!). That way, if he wants to be with me and his brothers, he can come into the living room, and if he needs a nap, he has the privacy of a room...

Great idea. The kids are usually able to do steps, but I found just going upstairs and getting a shower wore Jamie out in the beginning.

Justan visits with his father on a regular basis. His dad lives in a three story house with several (I think 4) flights of stairs throughout the house. I wonder how long until he can resume visiting with him? I find I'm becoming very protective of Justan these days, and just want to keep him home with me....forever!!!

Just wait until you see how protective you become after surgery! You'll know when it is ok for Justan to visit his dad. Would his dad be able to visit him at your house? It would give you a chance to get out of the house and also allow time for the two of them. If he only has to go up one flight of steps, he might be ready for a short visit as early as two or three weeks. Trust your instincts.

The surgeon told me Justan will have several tubes and wires when he comes out of surgery. I should have asked then what he would have, but to tell you the truth, I was overwhelmed by the fact of surgery, and didn't think to ask alot of the questions I have come up with since....I expect an I.V., a catheter, but what else should I be prepared for?

Jamie had an IV, oxygen, catheter,and a drainage tube in her back. Those are usually standard and I was prepared for all of them. What I wasn't prepared for was the NG tube. This is a tube that goes down their nose and into their stomach to drain whatever stuff is there. It was very helpful and kept her from vomiting, but was still a shock to see. She also had a central line (I think that's what it is called). It was a blessing to have. They could draw blood through this and also give meds, I think. But boy was it a shock to see it! I looked scary to me to because I wasn't expecting it and didn't know what it was.

Jamie was very swollen when I saw her in the recovery room. I was told that about 1/2 of the swelling had already gone down before I saw her. I could literally watch the swelling go down. When Jamie was being moved from the recovery room, we walked right past my husband and my mom and they didn't even recognized Jamie. They only knew it was her because they saw me.


Oh dear....another set of questions....but thanks so much for your help. It means more to me than you will ever know....

Laurie & Justan

We do know how helpful this forum is to people. We've all been there. I learned more from this forum than I did from anywhere else. We are happy to help and before you know it, you'll be on the other side of surgery and offering your own suppor to others.

Mary Lou

Karen40
02-20-2009, 09:38 AM
Hi Laurie ,

My daughter isn't a wrestler but she did have a wrestling unit come up in school this year. I asked her surgeon about it and he advised against doing anything too strenuous and to "know your limits". In his opinion, she wasn't going to go on to become a star champion wrestler in her lifetime, so why take the risks of potentially hurting herself? He also said this about the trampoline.

Of course, your son's case is much different if he was an avid wrestler before. I would talk to his surgeon.

That said, she was an avid volleyball player before surger and is back to playing volleyball after surgery. 14 months post-surgery, she is doing everything she did before and is having no problems or pains associated with her spine.

Karen

WNCmom
02-22-2009, 03:53 PM
My 13 yo son had surgery 3+ months ago. The only thing we got for him post-op was a recliner (a used one!), which he used a lot. He no longer uses a flat bed pillow to put behind him in a hard-backed chair, but for the first few months he did. We happened to have a long shoe horn that was nice, but by the time he discovered it he could already put his own shoes on by crossing his ankle over his knee and tying them that way. He has a long fusion--T2 to L4.

I remember counting 7 tubes/wires when he came out of surgery, including IV; stomach tube; catheter; wound drain; breathing tube (this came out a few hours post-op); wire on his finger to measure pulse and blood oxygen; and blood pressure monitor. There may have been 2 IVs. Each day post-op one or more disappears.

If you want to read day-by-day posting of the immediate post-op recovery, the thread is called: Hey WNCmom!

It's great that you're doing this research. I don't know how I would have gotten through without this forum.

Mary Ellen

justan's mom
02-22-2009, 04:35 PM
Mary Ellen,

Thank you so much for allowing me to follow Sydney's surgery. I do believe I've read every single post! I'd love to read more surgery stories, so I'm as prepared for Justan's as I can be. Please tell Syndey how much we appreciate it. Hope he's doing well!

Laurie

WNCmom
02-22-2009, 07:32 PM
Laurie--

I'm glad those posts help. I know I learned so much from reading the stories of others. Sidney is doing well, thank you. He attended a school dance a week ago, is walking miles a day (even jogging a few yards at a time to start getting back into it), and is allowed to bend a little more. He's still limited to lifting a max of 5 lb, though, and is looking forward to May when he'll hit the 6 month mark and be allowed to do more.

Please keep us posted as you approach Justan's surgery date and don't hesitate to ask questions.

Mary Ellen

amae28
02-22-2009, 08:01 PM
Hi Laurie and Justan!

I just wanted to add some input, as I had surgery about 7 months ago and I'm not too much older than Justan is (I was 20 when I had the surgery). I just want to start off by saying that at 7 months I feel AWESOME. I am back to running 4+ miles a few times a week and am at school full time. I feel substantially better than I did before! I stayed at home with my mom after surgery, and she was essential help for probably a good three weeks afterwards. After that, and especially after 4 wks when I stopped taking the narcotics, I felt a lot better and was doing everything on my own. My mom really helped me a lot turning over in bed (including during the night) because I couldn't do it on my own and I would get sore if I layed one way too long. Have a lot of pillows!!!

Stairs were not a problem for me besides getting out of breath easily, so the few you have should be OK. It will probably be helpful to get a long-handled grabber so Justin can put on clothes by himself. My bedroom is also upstairs so we set up a bed on the main level that I could lay down on during the day. The couch was not particularly comfortable, and the recliner was OK for short periods of time (if someone was there to put it up and down for me) but laying flat felt the best. With the bed downstairs I wasn't stuck in my room all day by myself. Also I found the shower seat helpful because I would get dizzy easily and it was nice to always have somewhere to sit if I needed.

Most of the time I watched TV and movies, but initially I slept a lot because the narcotics made me really nauseated. I honestly don't remember a good week and a half after my surgery, and whatever I did then (including watching movies and getting gifts) I got to obliviously do it over again later, lol. I enjoyed short visits from my friends and using the computer for however long i could stand to sit.

Hopefully that helps, good luck, and let me know if you have any more questions!

Abbie

BarbaraJ
02-22-2009, 09:33 PM
Hi Laurie,
Both my daughters had surgery in 05. One of them was really in to soccer.She took a year off and then went back to it with her doctors blessing. I am not going to say it has been easy watching her play but she has done fine. One time she took a really nasty fall and I was just about to go running out onto the field but she got up on her own. Anyway, after the game I go up to her and she's smiling and she says"boy mom, that was a real rod popper"I was not amused.
The other daughter is fused a little differently and she was not able to go back to being a cheerleader. But, she plays tennis and loves it.
I hope I've helped a little. Good luck with Justan's surgery.
Barbara