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pmsmom
02-18-2009, 05:25 PM
Well, we had a follow up with the surgeon today. Dd's thoracic curve is now at 60*. I know there is a 5* window, but there's something about actually hearing the numbers go from 54* to 60* that is very sobering. She first had x-rays in October.

So we are looking at summer surgery. Guess reality hit me today. I'm scared for my child.

Marian

Carmell
02-18-2009, 06:06 PM
Hugs to you, Marian. Not a good feeling - a punch to the gut. Try to take this one step at a time. Lots of deep breathing. You'll do great. Remind me how your daughter is? How does she feel? Best wishes with your planning and preparation. Not fun, but sometimes necessary. Hang in there. You're doing great.

smileyskl
02-18-2009, 06:24 PM
Sorry to hear that Marian. I can honestly say I know how you feel. I keep telling myself that we can't choose what trials we face in life but we can choose the way we handle them.. I keep telling myself and my daughter this every single day that goes by. Even after the surgery, it seems like there is still a long road ahead. This forum as you know provides excellent support and understanding. I will keep ya'll in our prayers. Please keep us posted.
Hugs.

Sharon

Snoopy
02-18-2009, 06:32 PM
Marian,

I too am sorry to hear your news. Carmell and Sharon have given you great advice. Please know that you are not alone. We will all be here for you every step of the way.

Mary Lou

ScolioDan
02-18-2009, 06:34 PM
Its not nice when you find out the curve has got worse. I remember when I found out my curve had gone from 30 to 65 in half a year.

pmsmom
02-18-2009, 06:38 PM
Thanks, Carmell.

My dd just turned 16 but was diagnosed last fall with scoliosis.
She had an MRI in the fall to rule out any problems. It was clear. She had xrays 2 weeks ago and we saw the surgeon today. The lateral one was fine.
Obviously the curve is a 60* one.

Guess I just zoned out in the dr.'s office. About all I remember is that he said he'd fuse from T-2 to about T-12/14. I had my questions, but just couldn't get them out as I was trying to listen to what he was saying. He doesn't feel like this would ever have an effect on her internal organs, but she would be disfigured (whatever that means).

She is a trooper--she doesn't say much about this other than a few weeks ago told me she didn't want to be a burden. But she is having some problems--her back gets stiff, she can't stand too long b/c her back starts to bother her. She isn't in pain, but she doesn't want to complain. She wants to be brave (and she is the bravest person I know) but she said she doesn't want to be seen as weak. But she did break down a few weeks ago and cried, not b/c she was scared, but b/c she didn't want to concern me.

Her attitude changed though, so that makes me wonder if she's telling me everything. Last fall, she didn't really care if she had surgery or not. On the way home she said she felt she should go ahead and get it done. She told the doctor that she said when she walked, she felt like her hips weren't in sync, but the dr. said they were ok, but b/c her back is the way it is, that's what she perceives.

So I'm thinking that she is starting to feel something's not right.

She's the one with the antibiotic/medication allergies. She also has asthma.

I feel terrible b/c I feel like I'm whining--I know your son had many more issues.

It's just that now it really feels real if that makes sense.

Thanks for caring!

pmsmom
02-18-2009, 06:43 PM
Thanks Sharon, Mary Lou, and Scoliodan. Your thoughts mean more to me than you'll ever know.

I do thank God for this forum. Guess we have a lot to get ready.

smileyskl
02-18-2009, 07:57 PM
My daughters fusion is from T2-T12. She is doing so good physically 9 days post-op. I just thought it might be good for comparrison. I know everyone is different though. You are stronger than you think - and so is your daughter. I didn't know if I would hold up that day but I did and so did she. It is my belief, that God gives you strength when you need it. The road ahead for us still seems sooo long but not nearly as intimidating as before. Hang in there!:)

Sharon


By the way, its not whining, just sharing/venting/whatever - not whining:D

babachi
02-18-2009, 08:19 PM
Oh, Marian! I'm sorry. It is so hard to hear that news.
Of course you are scared for your daughter. AND you are NOT whining. As people said, we are all here for you. (Just as you have been here for us)
((HUGS))
Bethany

pmsmom
02-19-2009, 06:46 AM
My daughters fusion is from T2-T12. She is doing so good physically 9 days post-op. I just thought it might be good for comparrison. I know everyone is different though. You are stronger than you think - and so is your daughter. I didn't know if I would hold up that day but I did and so did she. It is my belief, that God gives you strength when you need it. The road ahead for us still seems sooo long but not nearly as intimidating as before. Hang in there!:)

Sharon


By the way, its not whining, just sharing/venting/whatever - not whining:D

Thanks, Sharon for letting me know how your dd's fusion runs. My dh told me that my dd's case is probably one of the easier ones, if there can be such a thing as an "easy" scoliosis surgery. He doesn't seem to think there are any underlying conditions. I had asked him b/c I had read where a left thoracic curve could indicate such.

When I asked the surgeon about the possibility of curve below the fusion, he didn't seem to think there was a great chance. Of course, they won't say 100% but he seems to think it's less than 5%.

I guess it's just that this situation looks so insurmountable. I've read your stories and been inspired but I don't have the strength you all have. My dd and dh are very strong and I guess I feel inadequate b/c I don't have their strength.

I'm also in the stage of beating myself up for missing this in her and not catching this earlier.

Thank you for your thoughts and prayers. It also occurred to me this morning that perhaps we should also start praying for these surgeons who do this procedure. Many of us have sought out and found the best to do these surgeries, but a little (or a lot) of Divine Intervention couldn't hurt either. ;)

Thanks for being there, everyone!

Marian

pmsmom
02-19-2009, 06:50 AM
Oh, Marian! I'm sorry. It is so hard to hear that news.
Of course you are scared for your daughter. AND you are NOT whining. As people said, we are all here for you. (Just as you have been here for us)
((HUGS))
Bethany

Thanks, Bethany.

Everyone here has been great! I'm so glad I found this forum last fall.

In fact, yesterday in his office, there were more people than were there in October. Of course, in October, we were the last appt. of the day.

Anyway, I looked at the people and wondered if any of them were on this forum. It was not a very cheerful atmosphere--since my dd's surgeon sees both children and adults, there was a combination of folks in all age ranges.

I hope some do find this forum--maybe some have already. They will find it to be a great resource, but more importantly, a great place to find caring, supportive people.

Marian

Pooka1
02-19-2009, 07:45 AM
Marian,

I'm sorry to hear this. You are right to have faith in your surgeon. That is mainly what got me through my daughter's surgery.

We may be joining the summer surgery club... my other daughter has an appointment in early March. I am guessing this will be the "pull the trigger" appointment. She is over 40* almost certainly and even if there isn't a lot of progression in the last six months, she is guaranteed to have more over her life if we don't nip this in the bud soon.

Good luck.

smileyskl
02-19-2009, 01:19 PM
I guess it's just that this situation looks so insurmountable. I've read your stories and been inspired but I don't have the strength you all have. My dd and dh are very strong and I guess I feel inadequate b/c I don't have their strength.

I'm also in the stage of beating myself up for missing this in her and not catching this earlier.

Thank you for your thoughts and prayers. It also occurred to me this morning that perhaps we should also start praying for these surgeons who do this procedure. Many of us have sought out and found the best to do these surgeries, but a little (or a lot) of Divine Intervention couldn't hurt either. ;)

Thanks for being there, everyone!

Marian

Marian,

I typed you a PM and it dissapeared. I will retype it later if you don't get it.

We never would have found Katelyns except by accident (went for a skin rash, came out with scoliosis and later a tethered cord) and within a year and a half we are here. Don't beat yourself up:eek: What's important is now, not the past, not the future, but now. You are helping your daughter and you both will gain the strength you need through this. (I have never been particullarly STRONG emotionally either) :)I remember all the same feelings myself and sometimes still struggle with them. Hang in there and yes divine intervention is great. It is definately what has brought us this far. :D:D Hugs!

Sharon


Oh, and THANKS for all of YOUR encouragement to ME in the past. It means a lot to me.:)

Beckymk
02-19-2009, 03:00 PM
I know the shock when you aren't quite expecting the results you get.

Everyone here has already given you fantastic help/advice.

I don't really have a whole lot to tell you as I'm in the surgery is right around the corner for us.

I will say it's so easy to miss the scoliosis! I knew ours was a huge chance since my DH has it. We found out at her 6th grade appt. & I did the wait a year, which I should not have done but I couldn't really tell myself at that point in time. Then even with the back brace her lower curve went from 30 something to in the 50 degree range & we weren't even really concerned about that one. So, the smaller curve ended up being the larger of the 2 now.

Without these forums, I'm not sure I would feel as confident as I do. In addition, on a bizarre chance (maybe Divine intervention?), I happen to find someone on Facebook about a week before her daughter went in for spinal fusion at Shriner's in Chicago.

Carmell
02-19-2009, 03:15 PM
More hugs to you, Marian.

Now for the lecture (you know this already, but hopefully a reminder will help?)... There is no need to belittle the experience you and your daughter are going through. No two scoliosis patients are alike. Each is different. What may seem like an "easier" situation more likely refers to a less complicated procedure, or one that is more routine than another. That doesn't make it less important. This is YOUR child. It IS a big deal. Scoliosis surgery in any form is a major procedure - never to be taken lightly. With her allergies to medications and asthma, that puts her in a bit higher risk for surgery. I'd be making sure to have a good sit-down conversation with the anesthesiologist to make sure they understand her medical history completely. You want all this stuff lined up and a plan in place BEFORE surgery happens. She'll have a smoother and less complicated recovery if you do.

And whining (or whatever you call it) IS allowed here. That's what we're here for. I hope to be able to share our experiences so others can see they are not alone. It IS possible to get through this. The pre-surgery anticipation is awful. If you can get through that, you can get through anything. If you don't think you are as "strong" as your DH or DD, think again. You are. Keep telling yourself that. You have "been there" for her (and him, I'm sure) many more times than you realize.

Done lecturing... please remember we have a collectively large shoulder to lean on. Evidence in the fact this thread has so many posts already. We do care.

babachi
02-19-2009, 03:20 PM
QUOTE
"I guess it's just that this situation looks so insurmountable. I've read your stories and been inspired but I don't have the strength you all have. My dd and dh are very strong and I guess I feel inadequate b/c I don't have their strength.

I'm also in the stage of beating myself up for missing this in her and not catching this earlier."


Marian,
Don't beat yourself up. I would NEVER have caught Jesse's scoliosis on my own. His pediatrician did during a routine physical. Jesse was 17* at his first appointment with the surgeon, so catching it early not necessarily guarantees no surgery.
You do and you will have the strength. You may not feel like you can handle it, but you will.
If I knew before Jesse's surgery what I know now, I may not have been so anxious.
Whatever you need, whenever...
Bethany
(I cant figure out how to quote.)

babachi
02-19-2009, 03:27 PM
Well said Carmell!!

pmsmom
02-19-2009, 04:20 PM
Marian,

I'm sorry to hear this. You are right to have faith in your surgeon. That is mainly what got me through my daughter's surgery.

We may be joining the summer surgery club... my other daughter has an appointment in early March. I am guessing this will be the "pull the trigger" appointment. She is over 40* almost certainly and even if there isn't a lot of progression in the last six months, she is guaranteed to have more over her life if we don't nip this in the bud soon.

Good luck.

Oh, Sharon, I'm so sorry to hear about your second daughter. I know it's got to be hard for you guys.

As for having faith in the surgeon, that's why we picked him. :)

If not for this board and your suggestions, I would most likely have gone with the first dr. we saw (not that we wouldn't have gotten a second opinion), but she most likely would've been operated on by a spine specialist and not a scoliosis specialist.

A member on this board suggested the surgeon we have now. We would not have known where to go.

Marian

pmsmom
02-19-2009, 04:24 PM
Marian,

I typed you a PM and it dissapeared. I will retype it later if you don't get it.

We never would have found Katelyns except by accident (went for a skin rash, came out with scoliosis and later a tethered cord) and within a year and a half we are here. Don't beat yourself up:eek: What's important is now, not the past, not the future, but now. You are helping your daughter and you both will gain the strength you need through this. (I have never been particullarly STRONG emotionally either) :)I remember all the same feelings myself and sometimes still struggle with them. Hang in there and yes divine intervention is great. It is definately what has brought us this far. :D:D Hugs!

Sharon


Oh, and THANKS for all of YOUR encouragement to ME in the past. It means a lot to me.:)

Hi to Sharon # 2 as well. I didn't get the PM.

Wow! Talk about a shocker with having the rash then finding out about the scoliosis and tethered cord. Oh my goodness, I can't imagine!

Thank you for your wise words about the importance of *now.* You're right, I know it will take time to stop second-guessing myself and trying to leave the "what-ifs" in the past.

Marian

pmsmom
02-19-2009, 04:30 PM
Thank you, Becky. We were expecting this somewhat. The 2 other surgeons we saw, however, said they expected a progression of 1-2 degrees/year as she was finished growing. But even though our current surgeon never said that, he did say he saw a definite progression from the fall.

Yes, everyone has given great advice. :)

Thank you for sharing about the bracing--I've often gone back over that, too--another "what if" we had caught it sooner. However, the surgeon said that he didn't think in dd's case it would've made much of a difference.

I see that your dd's surgery will be coming up shortly. I will keep you in my thoughts and prayers.

Marian

pmsmom
02-19-2009, 04:37 PM
And to Carmell, thank you. My goodness, with all of your son's surgeries you still offer a shoulder here--God bless you!

Thank you for bringing up talking to the anesthesiologist--I will make sure that is done. I get so tired of telling people who brush me off. At one point several years ago her pediatrician got so fed up with me telling him she'd break out in rashes and such that he sent me to an allergist to get her tested. When the results on a certain antibiotic came back + for allergy, he tried another one and so on and so forth til after several years, we found some she can take. I've had nurses tell me after my dd's had hives from liquid Xoepenex in a nebulizer, "No one is allergic to that!" So I will have a long heart to heart talk with the anesthesiologist.

I know you all care--that's what means so much!

Marian

Snoopy
02-19-2009, 04:57 PM
Marian,

It's hard not to beat yourself up, a lot of us have done it. My daughter was diagnosed at her 12 y.o. check-up with a 36* Scoliosis curve and a 70 something degree Kyphosis. Before her diagnosis, I'd never heard the word "Kyphosis". No one ever told me what Scoliosis looked like. For several months before her diagnosis, my husband would walk up behind her and pull her shoulders back and tell her "shoulders back, chest out" and she'd say I can't. We never thought it was more than bad posture. Yeah, as a mom I thought it was my fault. How could I not have seen the signs? It takes awhile to stop beating yourself up, but it is not your fault. Remember that.

Mary Lou

Karen Ocker
02-19-2009, 05:08 PM
I had an area on my chest which itched for 6 years and had it biopsied 2x. I finally went to a dermatologist at a teaching hospital. A very thorough skin testing was done and I found out I am allergic to neosporin(extremely common-but I knew I was allergic to it ) and propylene glycol which is in so many skin preparations, deodorants, cosmetics, medications and even vitamin preparations. Many people think it's antifreeze but that is a different grade.:cool:

http://en.wikipedia.org/wiki/Propylene_glycol

Interestingly, many of the remedies which were prescribed for me had it in the remedies. No wonder they didn't work!!!

The point I am trying to make is I never could have guessed this in my wildest imagination.

A thorough testing is really mandatory.

Carmell
02-19-2009, 06:03 PM
Well said Carmell!!

Thank you. That means a lot.


And to Carmell, thank you. My goodness, with all of your son's surgeries you still offer a shoulder here--God bless you!

Well, the ruse of offering a shoulder to lean on is to hide the fact that these support sites/lists are actually my therapy. My own life seems a little less overwhelming when I can share with others.

Everyone here has consciously or accidentally been so helpful to me. There's no way to pay back, so we all try to "pay it forward". It hopefully makes new parents (and patients) feel like they aren't alone on this scoliosis journey.

pmsmom
02-20-2009, 07:31 AM
Marian,

It's hard not to beat yourself up, a lot of us have done it. My daughter was diagnosed at her 12 y.o. check-up with a 36* Scoliosis curve and a 70 something degree Kyphosis. Before her diagnosis, I'd never heard the word "Kyphosis". No one ever told me what Scoliosis looked like. For several months before her diagnosis, my husband would walk up behind her and pull her shoulders back and tell her "shoulders back, chest out" and she'd say I can't. We never thought it was more than bad posture. Yeah, as a mom I thought it was my fault. How could I not have seen the signs? It takes awhile to stop beating yourself up, but it is not your fault. Remember that.

Mary Lou

Thanks, Mary Lou.

One of the things with my dd is that she wears loose clothing--t-shirts, etc.
Most of her stuff has short sleeves, or she wears sweatshirts. Just her preferences--Thank goodness, she's not a Paris Hilton! ;)

Dh talked to a woman at his work whose child had this surgery last summer. When he told her that I was taking this kind of hard, she told him, "Your wife will. Believe me!"

I tell him about how hard it is for the moms here, but I think until someone actually told him face to face, it didn't sink in for him. It had to come from someone else's lips.

Marian

pmsmom
02-20-2009, 07:38 AM
Interestingly, many of the remedies which were prescribed for me had it in the remedies. No wonder they didn't work!!!

The point I am trying to make is I never could have guessed this in my wildest imagination.

A thorough testing is really mandatory.

Oh, Karen--I know what you mean! That's happened to us, too.

Once her allergist prescribed an asthma control medication and she started to get worse from taking it. When I called to set up an appt. for him to recheck her, the nurse was giving me a hard time. I had to finally tell her, "Look, he prescribed this for her and now he won't see her b/c she's having problems?"

After 25 years as a mom, you learn how to phrase things. :)

Anyway, we got the appointment, and sure enough, the control medication was making her worse. Symptoms went away almost immediately after we stopped it.

To this day, if he tries anything new with her, I have her take the first dose at his office to make sure there's no immediate reaction.

So, it's just insisting on the testing w/ the doctors.

I will push for this though. Thank you!

Marian

pmsmom
02-20-2009, 07:42 AM
Well, the ruse of offering a shoulder to lean on is to hide the fact that these support sites/lists are actually my therapy. My own life seems a little less overwhelming when I can share with others.

Everyone here has consciously or accidentally been so helpful to me. There's no way to pay back, so we all try to "pay it forward". It hopefully makes new parents (and patients) feel like they aren't alone on this scoliosis journey.

It does make a difference! Thank you!

New topic though--how much about the surgery did you tell your children beforehand--catheter, etc.? I know each child is different, but I don't want to overwhelm dd. She's a tough cookie, but I don't want to overwhelm her.

I'm slowly talking about things like letting the nurses help her in the bathroom and such. I plan to introduce things slowly over the next few months, but is there anything you all advise to share/not share?

Marian

Beckymk
02-20-2009, 07:59 AM
I have forgotten the age of your DD.

One thing I have done is there are lots of videos of people who have gone through this & are willing to share it on-line. I'm so greatful for that.

I have found a couple that just strike me as fantastic to share with DD so I have done that. It was really great because one of her biggest fears were the tubes. She heard of them and for some odd reason had in her head that they were these monster tubes the size of drinking straws or something. She watched one video, so the tubes were not huge and was so relieved. I think her imagination was getting the best of her but to actually see what in general was used really helped.

I have them bookmarked, so here you go:

http://www.youtube.com/watch?v=lmZZX1YkXjU

http://www.iscoliosis.com/video.html?reload=main&filename=mckennatrailer&videocookie=.wmv

smileyskl
02-20-2009, 09:34 AM
Marian,

I told Katelyn about everything she would remember. If it was something that she would be awake for I told her. Kids imaginations can be much worse than the real thing. Also, like Becky, we checked out some you tube videos - we even made our own but I don't know if we will post it or not because of privacy. Katelyn wants to since these others helped her but I don't know. Aynway, we watched Torries scoliosis video on you-tube (we just typed that in the search bar) I am not sure how to add attach. here. Anyway, she even e-mailed Torrie and Torrie e-mailed her. Torrie is 15 and had her surgery about 8 months ago. She does the video and e-mail thing to help other kids. She is really sweet and worth checking out. I don't think Katelyn understood completely that donor bone meant not her own bone and it came up in a conversation the other day and she had a complete meltdown. I think they should know whats going on. I don't regret telling her upfront even though she is an anxious child in general, she handled it okay. She likes to know whats going on. In our case, it helped her fears.:)

Sharon

pmsmom
02-20-2009, 11:48 AM
Thanks, for the links. I will check them out.

My dd just turned 16 in January. Don't know if I ever shared her name, but it's Paula.

Thus, my user name--pmsmom--I don't have PMS, it just looks like that! ;)

Marian

Carmell
02-20-2009, 12:08 PM
Marian,

I agree with Sharon - share as much with Paula (thanks for letting us know) that she will need to know. No need sharing things with her that goes on in the OR, since she won't be awake for that. Maybe even ask her how much she wants to know. If she doesn't want to know, don't force it on her. She'll get thru this whether you tell her everything or not. For little kids, role playing is great. When you let them be the doctor and go through the pre-op testing (look in eyes, ears, throat, take blood pressure (hug your arm), etc.) they have a better sense of what to expect. I also agree with Sharon that kids' imaginations can be a detriment. If they hear parts of the details, their imaginations kick in and in their minds the rest of the story can be more frightening than reality. Good luck finding a balance.

alwayzsomethin'
02-20-2009, 10:48 PM
Marian, ditto to all the advice. It's easy to beat yourself up about things, I believe that is a normal female reaction. I've done it myself. You have to focus on the positive and know you are taking care of business now. Try not to think about the coulda', shoulda', woulda'. You know you're in a good place here with plenty of support and great advice. Everyone is very helpful at passing on info by way of links, websites, or books, etc. Gather you info now, and do your research. Thats what my Kaitlyn called "momshomework".Tell Paula what she wants to know. In my experience, Kaitlyn did much better knowing what to expect. I didn't go overboard in details, though. When she would ask something , I would tell. If she didn't want to know, she would say, that was enough, I don't want to talk about it anymore, and that was fine. I never pushed the issue. You might not think it, but you guys are very strong, and will prevail. Hugs to you both, and hang in there! Your support for me while Kaitlyn was in surgery was comforting- so this comes right back at cha'. We're 2 days post-op and doing well. These kids are strong!!!!! Tracy

alwayzsomethin'
02-20-2009, 10:51 PM
Marian,

PS I got a chuckle out of your username. I did think you were a mom with pms:D Thanks for clarifying!:) Tracy

pmsmom
02-21-2009, 06:01 AM
Marian,

I told Katelyn about everything she would remember. If it was something that she would be awake for I told her. Kids imaginations can be much worse than the real thing. Also, like Becky, we checked out some you tube videos - we even made our own but I don't know if we will post it or not because of privacy. Katelyn wants to since these others helped her but I don't know. Aynway, we watched Torries scoliosis video on you-tube (we just typed that in the search bar) I am not sure how to add attach. here. Anyway, she even e-mailed Torrie and Torrie e-mailed her. Torrie is 15 and had her surgery about 8 months ago. She does the video and e-mail thing to help other kids. She is really sweet and worth checking out. I don't think Katelyn understood completely that donor bone meant not her own bone and it came up in a conversation the other day and she had a complete meltdown. I think they should know whats going on. I don't regret telling her upfront even though she is an anxious child in general, she handled it okay. She likes to know whats going on. In our case, it helped her fears.:)

Sharon

Thanks, Sharon. All of these are great resources!

I'm trying to give info to Paula in small doses. She says she just wants this done and over with, but I don't want her to be shocked when she wakes up w/tubes and such.

I've asked her if she wants to email/talk to anyone who's been through this.
Right now, she says,"No."

So I will have to play it by ear.

Marian

pmsmom
02-21-2009, 06:07 AM
Thanks, Carmell. I did figure that I'd be discretionary about the actual surgery as she'd be sedated.

I guess I just didn't want her to be shocked at the tubes, bloating, etc.

She's also *very* private and modest. That's good, but in the hospital while they're waiting for her to go to the bathroom, she could be in there a good half hour if she thinks someone is waiting to see if she goes--she's just that kind of kid. Often when we're out somewhere, she won't use a public bathroom unless no one is in there.

And when she was little, waiting for her to have a BM, well, you might as well pull up a chair, get comfy, and read "War and Peace." ;)

Snoopy
02-21-2009, 07:28 AM
Marian,

Paula probably won't remember much about the first few days in the hospital. The swelling will probably be gone within a day or so at the most, so that's something to prepare yourself for, but necessarily Paula.

Don't worry about the modesty issues. While in the hospital, I doubt she'll really care! From the very beginning, I did as much for Jamie as possible. I had the nurses show me how to log roll her and then had them watch me roll her to be sure I was doing it right. After that, I was the one who rolled Jamie whenever necessary. I also was the one who took her to the bathroom, gave her a bird bath as needed, walked with her in the halls, etc. I felt more comfortable doing it and Jamie trusted me more than the nurses to do it, so it worked well for us.

Has anyone told you to take sanitary pads to the hospital with you? A lot of girls and even the adult women, start their periods right after surgery. Paula might not start hers, but better to be prepared than to have to use the maternity pads they'll give her in the hospital!

Just in case Paula's modesty issues don't go away in the hospital, pack your copy of War and Peace!

Mary Lou

alwayzsomethin'
02-21-2009, 10:47 AM
Marian, like Mary Lou said, they did tell us more than likely you will start your period. My daughter finished hers the week before surgery, and she (thankfully) never did start. I really didn't want her to deal with that on top of everything else. However, I was the one who started a week early!:confused: True also about not caring about privacy and not remembering much!

ps: oops, I realized this am that i wrote in the thread last night we're 2 days post op. I lied, I meant 2 days home, 9 days post -op. Sorry! Tracy:)

Beckymk
02-21-2009, 10:52 AM
The starting the period is one thing I'm concerned about for my daughter.

I know she isn't even thinking of it but she never does. She is the one that always thinks I'm insane for forcing her to take pads to camp with her every year "just in case", etc...

She has never even had her first one yet & so I'm just imagining the scenerio of your very first period on top of spinal fusion surgery. I feel so horrible for her but there is nothing we can do about it. It seems the odds are in the cards that it will be more likely than not to happen.

I will make sure I'm prepared as I have no clue what supplies a place like Shriner's would have for such things. I'm going to assume some sort but ? since it's not like a normal hospital that you can go grab something from another department, KWIM?

smileyskl
02-21-2009, 12:53 PM
Marian and Becky,

We were told about the period thing also. Katelyn had just finished hers but we came prepared anyway. Also, I think because of all the pain killers and other things she was on, Katelyn was not concerned about Modesty (though she is normally modest) She remembers the tubes and all but again, I think because of the drugs, they didn't bother her. (Normally, it would freak her out) The swelling was a big shock to me but she never saw that - it was gone by the time she asked for a mirror (about 2 days). She didn't even care about the suppository for her potty troubles but she wanted the nurse to do it. (I guess in that situation she preferred a medical professional) but I helped with everything else. Everything will work out. Try not to worry too much.:) And I know thats easier said than done. We all do it:)

Sharon

Carmell
02-21-2009, 09:04 PM
If Paula allowed you to read "War and Peace" as a child having a BM, PLEASE make sure they have a PLAN for her bowels after surgery. Constipation can make her recover MISERABLE. Lots of fluids BEFORE surgery will help. Please don't let them ignore this. She should have AT LEAST stool softeners as soon as she can tolerate liquids. Keep on top of this and she'll have a much more comfortable recovery.

pmsmom
02-22-2009, 06:43 AM
Hi, Mary Lou.

I agree that there's a lot of things that Paula won't initially remember. I recall when my sister had a closed head injury sustained in a car accident back in 1987, there was a lot she didn't recall.

I had heard about the swelling. In fact, there's a lady that dh works with whose dd had the surgery last summer. She's filling him in on things like the swelling and such. At least, he's listening to her.

Right now that's another concern. I know someone will need to be with her 24/7 and I don't think I'll have much respite. Dh will be coming along, but as much as I love him, he is not an advocate and dislikes going against "the man." I.E. if she needs pain meds, he'll sit there and tell Paula to wait til the nurse comes and not go in search of one. He's said we won't need to keep track of the pain meds b/c it will be in her chart and the nurses will check.

So, I'm trying to rest as much as I can now b/c I think all I'll get is bathroom breaks. That is weighing on me.

Even though I have family in the area, my mom is 82 and can't really help. My sister is 43, but she has her own issues w/her head injury. Her older sister is 24 but really is not in touch w/us anymore. She acts interested, but she'd rather not be bothered if truth be told. It's too overwhelming for her so she tries to put it out of her mind.

So, keep your fingers crossed that I can find some respite.

I have seen the suggestions that you and others have made. I am adding things to my notebook as I go along. Hopefully, I'll remember to take it with me. :)

I think I will leave War and Peace home this time. I promised Paula that I would read the Lord of the Rings, so I'll be bringing some of those books along.

Take care,
Marian

pmsmom
02-22-2009, 06:45 AM
How's your dd doing, Tracy?

We'll be bringing the pads. I hope I don't start--I thought I was in menopause, then went through a particularly stressful time recently and had a period. :(

Wouldn't that be a hoot if dd didn't get one and I did!

Marian

pmsmom
02-22-2009, 06:48 AM
The starting the period is one thing I'm concerned about for my daughter.

I know she isn't even thinking of it but she never does. She is the one that always thinks I'm insane for forcing her to take pads to camp with her every year "just in case", etc...

That sounds like me! Only this time I told her that she needs to tell me what size underwear she has so she has new ones to take to the hospital. Isn't that like a mom! :)

pmsmom
02-22-2009, 06:53 AM
Thanks, Sharon and Carmell!

I will make sure they have a plan for her bowels. Do they allow stuff from home?

I wasn't kidding about that thread I wrote somewhere about fruit-eze. It's this food supplement that does work and helps move the bowels.

Well, at least I'll have a supply at home! She's always had issues w/constipation, but her pediatrician recommended this *years* ago and she's been on it ever since.

WNCmom
02-22-2009, 03:35 PM
Marian--

I've been out of town for the last week and just read your news. I'm sorry fusion is necessary, and I'm glad your daughter reached skeletal maturity before it became so. I want to chime in that in my experience the moms and their children who go through fusion are so much stronger than they think. My 13 yo son was fused T2 to L4 3+ months ago and is recovering very well. And the wait for surgery is so long and anxious that once it happens, time seems to fly.

Also, Becky--my son had his surgery at Shriners in Philadelpia and the hospital, as far as I could tell (I have nothing to compare it to--first really big surgery in our family), was very well equipped to meet every need that came up (and they serve many many children with many many needs). I particularly appreciated the PICU, which was quiet and well staffed.

You all will do very well--you're here, you're doing your research, and you'll be as prepared as you can be. Remember, swelling (facial, ankle, and genital) is common with this surgery, so don't let it scare you.

Mary Ellen

Beckymk
02-22-2009, 10:33 PM
Right now that's another concern. I know someone will need to be with her 24/7 and I don't think I'll have much respite. Dh will be coming along, but as much as I love him, he is not an advocate and dislikes going against "the man." I.E. if she needs pain meds, he'll sit there and tell Paula to wait til the nurse comes and not go in search of one. He's said we won't need to keep track of the pain meds b/c it will be in her chart and the nurses will check.

Take care,
Marian

You and me both. Although with the pain meds, at least in the beginning, they might have her on a pump -- sorry forgot the technical name. It's just a matter of pressing a button, at least that was my understanding.

I'm going solo on this one for the hospital. My DH will be working all week, my mom will be with the boys -- so it will be me at the hospital. I really don't mind though at least during the surgery part...I already know I'm going to be witchy (or maybe that's just me right now since it's coming up soon & I'm trying to cram everything in -- although with *probably* PMS. :p ). I just know in my head I will do better alone.

I'm trying to figure out when the kids are up for visitors...I'm not sure if it's ever while they are in the hospital. It seems like such a very short time before you are released.

smileyskl
02-22-2009, 11:37 PM
Katelyn was on the morphine pump for the first 3 days but she was also given a prescription type Motrin-Toradol or something like that and also antibiotics so you still have to watch. She was ready for some visitors at three days but she still slept a good bit on and off. We just made the visits short and she did fine.:) The time really does fly. My laptop was a lifesaver when she was sleeping. Everyone is different of course but thats how things were for us. Hang in there, it will be over before you know it.

Sharon

Snoopy
02-23-2009, 07:06 AM
Right now that's another concern. I know someone will need to be with her 24/7 and I don't think I'll have much respite. Dh will be coming along, but as much as I love him, he is not an advocate and dislikes going against "the man." I.E. if she needs pain meds, he'll sit there and tell Paula to wait til the nurse comes and not go in search of one. He's said we won't need to keep track of the pain meds b/c it will be in her chart and the nurses will check.

So, I'm trying to rest as much as I can now b/c I think all I'll get is bathroom breaks. That is weighing on me.


I have seen the suggestions that you and others have made. I am adding things to my notebook as I go along. Hopefully, I'll remember to take it with me. :)

I think I will leave War and Peace home this time. I promised Paula that I would read the Lord of the Rings, so I'll be bringing some of those books along.


Husbands--we love them, but they can drive us crazy sometimes! You might be surprised. Once he sees his daughter in recovery, he might change his mind about waiting for a nurse to bring pain medsand also become more hands-on. I hope so because you CANNOT wait for the nurse to bring pain meds! You have to write down exactly what medication she is given, what time it was given, what it was for and also when she can have it again. For a little while after the IV meds are gone, you'll need to request pain meds as directed until you see how she tolerates the pain. You do not want the pain to get ahead of her.

My husband doesn't do well with medical stuff. But he was fantastic with Jamie in the hospital and at home. He wouldn't log roll her (I think he was afraid of hurting her), but he was always ready to get her drinks, adjust her pillow, etc. Every little bit helps.

Make sure you take bottled water and snacks with you to the hospital. As much as you won't want to leave, you need to get out of the hospital room. Go to the cafeteria or simply go outside for some fresh air. You'll need to keep your sanity.

Hang in there.

Mary Lou

Snoopy
02-23-2009, 07:19 AM
I'm going solo on this one for the hospital. My DH will be working all week, my mom will be with the boys -- so it will be me at the hospital. I really don't mind though at least during the surgery part...I already know I'm going to be witchy. I just know in my head I will do better alone.

I'm trying to figure out when the kids are up for visitors...I'm not sure if it's ever while they are in the hospital. It seems like such a very short time before you are released.


I understand being at the hospital alone. My husband doesn't do well with hospital so I sent him to work the day of surgery. Bless his heart, he called me every hour to make sure Jamie and I were both okay. This was no easy task for him. He is a truck driver and doesn't have a cell phone, which meant he was searching constantly for a phone. My mom was with me the whole time and I appreciated it, but she drove me crazy! We both packed breakfast and lunch, but the smell of food made me sick to my stomach. Mom kept insisting that I eat. She was just as nervous as I was, and I just wanted to sit quietly, but she talked constantly. My sister-in-law stopped by unannounced and that was a blessing. She simply hugged me and sat with me. She got me something to settle my stomach.

As far as bringing the boys to visit, that would depend on how old they are. Are they able to deal with all the tubes? My dad brought my then 11 y.o. daughter, Tracy, to the hospital as soon as Jamie was in recovery. I needed to see her because I know she was worried about Jamie and I needed to make sure she was okay. My parents stayed with her while I was in recovery with Jamie. I'm glad Tracy was there, but I also was very upset about something that happened. My husband, mom, dad and Tracy were all waiting outside the Intermediate Unit and came rushing into Jamie's room before I got a chance to talk to them. Jamie did not look like herself and had tubes sticking out of her that we didn't expect. Both my husband and Tracy had to leave the room. I was torn--I needed to be with Jamie, but I needed to be with Jeff and Tracy. Although I reassured Tracy that Jamie was okay and it would be better tomorrow, she was still shook up. It tore my heart out to send her home with my parents.

Tracy came to the hospital every day. She was okay the day after surgery when Jamie was in a regular room and looked more like herself. Although the hospital stay is short, your other kids will need you. Jamie was in the hospital for six days and I only left the hospital twice. Both times was to go home and spend time with Tracy. She assured me it was okay that she stayed with her dad and my parents, but she really did need me too.

Mary Lou

Pooka1
02-23-2009, 07:25 AM
I'm trying to figure out when the kids are up for visitors...I'm not sure if it's ever while they are in the hospital. It seems like such a very short time before you are released.

My daughter's twin waited with my husband and me through the surgery and was able to see her in the ICU afterwards. She visited every day her sister was in the hospital.

These visits were extremely important for both girls.

Beckymk
02-23-2009, 08:52 AM
I will start a new thread regarding visitors. I feel like I have hijacked the OP's one. Sorry.

pmsmom
02-23-2009, 01:01 PM
Marian--

I've been out of town for the last week and just read your news. I'm sorry fusion is necessary, and I'm glad your daughter reached skeletal maturity before it became so. I want to chime in that in my experience the moms and their children who go through fusion are so much stronger than they think. My 13 yo son was fused T2 to L4 3+ months ago and is recovering very well. And the wait for surgery is so long and anxious that once it happens, time seems to fly.

Also, Becky--my son had his surgery at Shriners in Philadelpia and the hospital, as far as I could tell (I have nothing to compare it to--first really big surgery in our family), was very well equipped to meet every need that came up (and they serve many many children with many many needs). I particularly appreciated the PICU, which was quiet and well staffed.

You all will do very well--you're here, you're doing your research, and you'll be as prepared as you can be. Remember, swelling (facial, ankle, and genital) is common with this surgery, so don't let it scare you.

Mary Ellen

Thanks, Mary Ellen. I had been keeping up with Sidney's surgery and recovery.

I'm glad he's doing so well.

Marian

pmsmom
02-23-2009, 01:05 PM
I'm going solo on this one for the hospital. My DH will be working all week, my mom will be with the boys -- so it will be me at the hospital. I really don't mind though at least during the surgery part...I already know I'm going to be witchy (or maybe that's just me right now since it's coming up soon & I'm trying to cram everything in -- although with *probably* PMS. :p ). I just know in my head I will do better alone.



I will be thinking of you being solo.

Perhaps it would be better--I'm thinking I would take it out on dh if I felt he wasn't speaking up.