Surgery Set

[ARodsMom]

We have been given the official word that my 12 yo son's surgery will be Dec 22nd. They will fuse T4 - L2. Could someone help me understand what they mean by posterior? We were told he will only be in the hospital for 4 days and when he returns he will be fine with stairs so no need to put his bed downstairs. And no concerns as far as his bed being pretty low to the ground. Can someone share what their personal experience was with stairs and the height of their bed? His really is low, mine might require a step stool for him.

Dr. Hanson will perform the surgery at Texas Children's Hospital. We go for pre-admission/blood work the Wednesday before. Waiting on orders to be sent to Gulf Coast Blood Bank so we can donate blood for him. Waiting on counselor at school to let us know what is required from doctor's office for homebound services after surgery. It seems very real to me now, but he seems to be fine. He said he's had enough with the doctor visits and information. He knows all he wants and would prefer not hearing any more. Doc spoke to him and asked if he had any questions/concerns...he let him know he had none and was just ready to get on with the surgery already.

[flowerpower]

Hi ARodsMom,

I also have a 12 y.o. son who will be having surgery in March '11. I have an older son who (also) had a posterior fusion 5 years ago.
Posterior means they will approach from the back. He will be face down during the surgery and the incision will be down the middle of his back.
We also have stairs, and my son was ok going up and down (slowly) but I would spot him b/c there is always the chance (esp. in the couple of weeks post-op) that they may feel light-headed or even faint. My son never fainted but would feel light-headed at times, esp. if trying to get up too quickly.
As far as the bed being low, not sure about that. I don't forsee it being a problem, but it might(?) be a little painful as he lowers himself down to bed.
Glad your son seems to be handling it well. Though I know it must weigh on his mind, he seems to have the same attitude as your son, and just wants to get it over with. He actually wanted to do it during Christmas vacation so he wouldn't have to miss so much school, but our dr. was booked til March. If you have any questions, will be happy to answer.

Best wishes,
Renee

[Snoopy]

HI ARodsMom,

My daughter will be 6 years post-op tomorrow and she has a similar fusion to what your son will be having. Like Renee's son, my daughter was okay with doing steps and in fact had to go up and down steps with the pysical therapist before she could come home from the hospital. We did, however, bring a bed downstairs for Jamie. The main reasons we did so, were 1) we had an extra bed and 2) because we don't have TV's or video games in the bedrooms. We found it nice for Jamie to be downstairs so she was still involved with the family, but could lay down and rest while visiting with friends or watching TV without wasting the energy to go upstairs.

I don't know either if he'll have trouble with the bed being low. Does the bed sit lower than a toilet? Sorry for the comparison, but Jamie didn't have a problem with gettting up or down from the toilet, so if the bed isn't lower than that, he should be fine. You can always buy risers if the bed is too low.

I too am here if you have an questions.

Mary Lou

[kennedy]

like to orther said posterior means back
plus i'm fused the same levels that your son is going to be fused from T4 to L2

[ARodsMom]

Thanks for responding and answering some of my questions ladies.

Renee, wow. You've gone through this twice? I'm having a hard time going through this just once. I work for a school so I was glad our doctor could fit him into the schedule in December because it cuts down on my time and his time out of school. But, I have two younger children and it'll be hard for him to be in the hospital on Christmas, and the expense of an operation during Christmas is no fun.

Mary Lou, good thinking with putting the bed where the tv is. We don't have tvs in the kids rooms either because we feared they'd never come out. My husband is thinking of putting his bed in the loft where their games are so we can all sit around with him and he won't be so lonely.

His bed is lower than a toilet. Even with the risers I'm not sure how much higher it will make it. It's really weird how low his bed is, and I never bothered questioning it until now that I'm concerned with how low it is. He has a loft T style bunkbed and he sleeps on the bottom one, and it's really low, maybe so they can sit up on it and not hit their heads on the top. ????

Kara, since you are fused in the same area did you have problems sitting too low?

One more question....will he be out of proportion with his height? He's no where near being done with his growing, and that's a fairly large area that will no longer grow. We were told he'd be at least 6'2 by docs estimate. Will that area be noticeably smaller than the rest of his body?

Thanks again ladies.

Angie

[flowerpower]

Hi Angie,

yes, can't believe we have to go through this twice. Only advantage for me is I'm a little more prepared mentally & emotionally, not as freaked out as I was 1st time around.
My older son had his surgery during Christmas vacation also. No fun being in the hospital during the holidays but younger brother and sister did ok and we had family helping us out with them. He came home Christmas evening, best gift ever!

Regarding the height/proportion: the way our dr. explained, the vertebrae grow approx. 1mm per year. So, if there is still 4 more years left of growing to do, this will mean a loss of 4mm growth per vertebrae fused. As far as my older son, he gained some height immediately post-surgery from the straightening of the spine. He did lose some growth in the fused area and his trunk is slightly shorter in proportion to his legs. However, it's not really noticeable to anyone - mainly me b/c I know...you know?

I would talk to the dr. again about the low bed. Does he know just how low it is? I only say this b/c of the restrictions on bending, lifting, twisting. It's probably not a problem, but I would want to make sure.

Renee

[kennedy]

well i had problem sitting low like i can't sit in little kids chairs and even on the floor sometimes. But i had really hard times getting out of chair when i went to high school and still do in college

[Snoopy]

Mary Lou, good thinking with putting the bed where the tv is. We don't have tvs in the kids rooms either because we feared they'd never come out. My husband is thinking of putting his bed in the loft where their games are so we can all sit around with him and he won't be so lonely.

His bed is lower than a toilet. Even with the risers I'm not sure how much higher it will make it. It's really weird how low his bed is, and I never bothered questioning it until now that I'm concerned with how low it is. He has a loft T style bunkbed and he sleeps on the bottom one, and it's really low, maybe so they can sit up on it and not hit their heads on the top. ????

One more question....will he be out of proportion with his height? He's no where near being done with his growing, and that's a fairly large area that will no longer grow. We were told he'd be at least 6'2 by docs estimate. Will that area be noticeably smaller than the rest of his body?

Angie

Angie,

I'm glad to hear my husband and I aren't the only ones who don't allow TVs in the bedrooms. I agree, we'd never see them! Your son will probably spend a lot of time watching TV in the beginning, so yes, it makes sense to have a bed where there's a TV as well as where family/friends can hang out with your son.

With your son's bed being the bottom of a set of bunk beds, it makes complete sense that it is so low, so the kids don't hit their heads. Ask your husband if the bed rails are adjustable to make the bed higher. My daughter's bunkbeds are a little different than yours, but there's two places to put the bolts which attach to the head and foot boards. Not sure if that makes sense, sorry, but when we have the beds apart, (she has two twin beds for her bunk beds) we can use the top set of holes to have the bed up higher and have lots of room underneath to store stuff or in the bottom holes, so if we had a smaller child using the bed and wanted it lower to the floor. Another suggestion would be to switch beds with one of his siblings. If possible, let your son use his own mattress so it is what he is use to.

Regarding the height/proportion, I don't know that answer. Having a daughter who was done growing before surgery, I won't even venture a guess!

Mary Lou

[ARodsMom]

Renee, our families seem so similar. Alex is our oldest, he has a younger brother and sister. He's only supposed to be in the hospital until the 26th, so maybe we'll get lucky and get to bring him home Christmas Day....which would mean only 3 days hospital stay and I might be a little uneasy with only 3 days in there. It seems like so little time for a big surgery. And I will have to mention to doc about how low the bed is.

Does anyone ever feel as if they are bugging their doctor's office? I'm gonna get on their nerves soon.

Thanks Kennedy I appreciate your responses to my questions.

Mary Lou, I had to read your response a few times to understand what you meant about the beds (I'm a little slow lately-too much information in my brain). I will definitely ask the hubby to check it out. If it doesn't work we'll have to get a bed frame at least. No chances! We don't have another bed he can use in the house. His little brother has a loft bed so it requires the use of a ladder, and his little sister has a toddler bed...and to picture the kid laid out on that little bed is just hilarious!

We had a visit with his neuro surgeon yesterday and it looks as if he too will be getting his hands on Alex. Alex has some fluid build up in his spine from his Chiari so he's going to insert another stint since the first one is probably blocked/stopped up. So Neuro surgeon will go in first and then Orthopedic will go in. Same day, we joked that we were getting the 2 for 1 special.

Angie

[flowerpower]

Hi Angie,

Yes, it seems like a few similarities! Sister is the middle child. I'm amazed but very happy she doesn't have scoli also...

Don't worry about bugging the dr.'s office - this is your child, how can they expect you to make informed decisions otherwise? Of course it would be ideal to walk in with every question possible and get them all answered at once, but this situation is kind of "learn as you go"

I hope everything goes as planned and he gets to come home on the 4th day. I, myself wouldn't want to rush it though, unless he was doing really well.

I chuckled at your "2 for 1" comment. As it turns out, Joe is due for his 5 yr. post-op next week and I was thinking I would jokingly suggest to our dr. that he should start offering us frequent flyer points or a "buy one, get one free" coupon! :^P

Renee

[Snoopy]

Angie,

If you aren't 100% confident in taking your son home when the hospital says he's ready to go, don't hesitate to speak up. Make sure his pain is well controlled on oral meds before you leave the hospital. You don't want to be figuring out dosage issues at home.

Nope, you are not bugging the doctor too much!

I don't think Kennedy's issue with getting up off the floor is normal. Most kids don't have any issues with that. Jamie is fused from T3-L2 and has never had a problem with getting up or down when sitting on the floor or sitting on low chairs. I wouldn't recommend your son doing it for a while, but he should have no problem once he is through his recovery period.

LOL Sorry, I knew my bed post was going to be confusing! I just couldn't figure out a better way to describe it. Hmmm...younger son had loft bed, little sister has a toddler bed, so it sounds like you and your husband will be giving up your bed and sleeping in the bunkbeds! Just a thought. Before buying a bed frame, you might want to ask a friend or family member if you can borrow a bed.

Hang in there. Remember to take care of yourself. Moms tend to get so busy planning everything and taking care of everyone else, they forget to take care of themselves.

Mary Lou

[laurieg6]

My son was also 12 when he had fusion surgery. I thought I'd mention that I, too, have a very low bed. After my son's surgery, I thought that maybe his bed was a little too high up for him so I had him try sleeping in my bed. He was absolutely miserable trying to lower himself into my bed so I switched gears again and we put him back in his bed where he was fine, for the most part.

Something else I found helpful was keeping a baby monitor (I bought one just for the surgery and then gave it to a new mother I met) in his room for the first few days so I could hear him anytime I wasn't in there with him. My husband and I took turns sleeping in his room though, the first few nights, just in case he needed something.

While we were in the hospital, I kept a little notebook to write down all the doctors, nurses and therapists names as well as the meds my son was given and times they were given. I also used it after we got home in order to keep track of the times I gave him the meds. It really helped me to keep track of, and remember things and for quite a while, my son sort of liked reading it.

I know it's a really stressful time for you right now but soon it will all be over and it will be such a relief to have the surgery over with. Remember to get him walking as soon and as often as possible after the surgery. It really helps with recovery.

Hang in there!

[kennedy]

Angie also some times i have problems walking because i have some uncommen foot disorder

[Snoopy]

Angie also some times i have problems walking because i have some uncommen foot disorder

Angie,

Kara's problem with walking is because of her foot problem....totally unrelated to her Scoli surgery.

[ARodsMom]

Mary Lou, I was figured it would come down to me giving up my bed. Snap! We ended up getting a bed frame for him (since we couldn't raise his bed after all) so he's all set up in the loft where he'll have access to computer, tv, and video games.

Laurie, I do have a journal. Someone noted it on a post so I went out and picked one up for myself. So far all my notes are on there, like blood bank info, homebound info, notes from when we went to see the surgeon... Monitors sound like a good idea, and I think we still have the ones my daughter used.

I have to say I am EXTREMELY nervous. I'm not scared, or worried, I know God is in control. I am nervous though, it's sad that he has to go through it, but I know there is a reason for it and I fully trust God, his plans are better than mine. Our entire church prayed for him Sunday, and it was beautiful.