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Isabelle
08-19-2004, 05:49 PM
Hi (Bonjour!) to all of you,

First of all, thank you to every one for taking the time to post all that information. It is so helpfull! I must say I was nervous to register because english is not my first language. So if I write with an "accent" it's because I am french. My husband told me that I could communicate in english even so I think I'm not great at it! I can tell you that I understand very well.

My daughter is Roseline, 12 years old. She wore a brace since she was 8. She is now scheduled to have surgery on September 27th. She has an upper curve of about 58. she will have anterior and posterior surgeries. The surgery itself doesn't worry me to much. She had major heart surgeries three times already, so I think I know what to expect from her stay in the hospital, even though it's not the same. All my questions and worries are more about the post operation. That is why this forum is sooo helpfull. I read the thread of mumof5 with a lot of interest.

She will have to miss school for about 2 months and I do not know what she will need at home and at school after. She is not in Highschool yet, so I think that having just one desk, one chair will be easier to make adjustments if needed.

If you think that you have little tricks that you wish you had known before, it would be very appreciated if you can share them with me. For her stay at the hospital (for example, I read about having non slippery slippers) and at home after. What kind of pillows could help make more comfortable? Anything you can think of will be read with a lot of gratitude.

Thank you again and in advance for everything.

Hope my accent is not too thick ;)


Isabelle (who does not feel so alone anymore)

Alison
08-20-2004, 02:35 AM
Hi Isabelle

G'day from Australia :-) Your English is very good, and I have admiration for anyone who can speak two languages cause I only know how to speak English but want to learn another one day.

Some things for post op depend very much on a wait and see scenario that is some people find they need things but others find out that they don't. But here are a few tips

:In the first bit when you come home you'll probably find that your daughters overall attention span isn't quite at what it is normally. She will probably not have enough attention span to read books/do crosswords/word sleuths but videos are good as well as other short attention span activities

:Pillows that we found that worked well are small pillows (such as ones that go on the couch/lounge/setee) or pillows like the ones that go on the bed that are a bit flat. Small pillows work good because they are easy to squish and to fit around you

:This may seem a strange one but if your daughter wears a bra she may find it uncomfortable to wear one for awhile. The clasp on the bra may itch/rub on the scar

:Your daughter may find "phantom itches", what I mean by this is that she'll get a persistent itch (often on the back) and no matter how much you scratch it it is still there

:Things next to her bed which may be good include a small drink; to save her from getting up in the middle of the night, an alarm clock and especially if her room is far away from yours either a baby monitor of it is close a bell. If she needs you in the middle of the night she could try these first before coming to get you.

:As for school stuff, a lot of it varies from individual to individual. Depending on what her school chair is like now, she may find it more comfortable (for at least the first part when she goes back to school) to be in an office style chair that you can adujust or to have some pillows at her back and under her backside to make it a bit more comfortable (you find yourself quite wriggly sitting there all day at the start when you go back to school or you can't quite sit in the chair quite the same way as before). Depending on how high her fusion is going she may find it difficult to write with her paper flat on the desk because she will probably find her neck a bit stiff and will get sore after writing for awhile. Writing on a lever arch/big 2 ring binder on its sloped side works good and is also mobile as well as sloped writing boards work good too (but are heavy and a bit of a pain to move around

:-) Alison

mumof5
08-20-2004, 06:38 PM
Hi Isabelle,
I'm glad that you have found what I have written helpful. I check back here most days and post if I feel I can help, so if you want to ask me (or Amber) anything it won't be long before I answer. Alison has given us so much great advice and ideas over the last few months.
As for pillows; we have lots, I even bought a couple just before the surgery for myself and Amber ended up with them. While we were in hospital I was looking at what they were using and actually rang my mum and asked her to get some others for us. They were big but very soft and 'squishy'. I could 'mould' them into, around and under Amber. Sometimes I found that we needed a very thin pillow to 'fill in' a spot or a firmer one to give just that little bit more support. Even though she really only needed the extra pillows for a few weeks they were definitely worth getting. Anything that helps to ease their discomfort is worth it.
In the hospital instead of using hot water bottles they 'microwaved' towels. This worked so well I did it at home as well. You can fold the towel any way you like and it won't go 'cold' like hot water bottles do.
I also found one of those tables with the little legs that you put over your lap when you are in bed was very helplful. Though Amber never used it bed, she used it while sitting in a lounge chair. She ate her meals there, played games, lent on it to write.
I hope this helps.
As also said your english is fine.
Best wishes.
Cheryl.

lrmb
08-20-2004, 07:46 PM
Hi there,

Your English is great!! I will be thinking of you and following the posts as you prepare for this surgery. I will have to undertake it myself sooner or later (I'm 28 with progression) and am following everybody's advice with gratitude.

For now though I have a quick question for mumof5. Can you tell me how to microwave the towels exactly? Do you have to wet them and then micro for how long? I often have pain and would love to know how to do this for when I am staying away from my own home without carrying a heating pad.

Thanks, as always--Laura

mumof5
08-20-2004, 11:09 PM
Just fold them up, dry, so that they will fit in. Give it short , 30 secs or so, bursts on high. Until it is warm enough for you.
We have wheat bags at home but they were not always the right shape for Amber to use, the towels were perfect because you could use 2 layers in necessary.
Everyone was using them in the hospital, I would never have thought of doing it.
Best wishes.
Cheryl.

Isabelle
08-21-2004, 12:12 PM
Thank you to everyone,

This reply is short, as I have problems posting replies and am getting frustrated to write for nothing so this is a test and if you have any advice about that you are more than welcome. Why do I login and loose my replies???

Thanks, Hope it works and I can finally talk to you!

Isabelle

Isabelle
08-21-2004, 01:13 PM
Thank you to everyone for your replies.

I think I will get a lot of different pillows.

Alison: Good info about those phantom patches. Roseline already has persistant tingling spots and she hates it.

About school questions. They come mainly from Roseline. I think she is trying to visualize herself at school. Anyway, it gives us a great opportunity to talk about her surgery. It helps me to tell her about the big things, like the fact that she will never have the same mobility.

Cheryl: Thank you and Amber for writing your experience, it does help a lot!!! Great tip about the hot towels.

Laura: Thank you for your support! I also wish you the best for your journey.

Please feel free to give us any other tips. It seems to help while we are trying to prepare for this big adventure.

: Other questions from Roseline:

Will she need someone to carry her school bag?

Will she have to miss recess for a while?

Is it usual not to attend phys ed, and for how long?

I think she is trying to figure out if she can ask boys to help her!!! No, she is not like that yet! But maybe she is hoping it would be a good excuse... wouldn't? ;)

Isabelle

annie16
08-21-2004, 05:09 PM
HI!
Im 16 and I just had anterior and posterior surgery on July 22nd. To answer some questions...
Pillows- I only liked one because it bent my back alot to be propped up so it was very uncomfortable
warm stuff- my boyfriend brought me a bear that you miccrowave and it stays warm for like 3 hours. it was nice for 2 reasons, it fit into my arms really well, and I would get hot/cold flashes during the night so I could reach over there and grab the bear if I got cold
feeling- I still dont have feeling around the incisions (there are 3 incions and a chest tube hole) and also in the top of my leg. I talked to a friend of mine who had a similar (less invasive) surgery 1 1/2 years ago and she has yet to get the feeling back in her leg.
school- I was extremely anxious to get back to normal. I really pushed my self to get better. My surgery was on the 22nd and I started school on time AUgust 16th, going full 8 hour days. It is very exhausting, but I dont think your daughter will want to be away from her friends for that long, she'll probably want to go 1/2 days after a month and eventually get back into the swing of things.
books- I am not allowed to carry a back pack, which would be nearly impossible anyways because I have to wear a hard brace till October. I carry a bag that goes over my shoulder that fits a small binder, pencil bag, and one book, so I cant carry much. Ive had friends help me carry books to my car when I have to bring more than one book home. Im also supposed to be getting a home set of books.
recess- I no longer have recess ( I wish I did though) but I play waterpolo, and Im not allowed to even think about getting back into the water until January. She wont feel like playing and running around for a while though because I get out of breath walking up stairs, so I couldnt imagine jumping and playing for probably 4 months.
I hope I helped as much as possible. I was in a similar situation a month ago, so if you have any questions feel free to ask!
Annie

mumof5
08-21-2004, 05:28 PM
About school. Amber is about 4 months post-op and is going to school 4 days a week. She misses Wednesdays as she only has one class and the rest of the day is basically sport which at the moment she cant do. She uses this day to do her homework and catch up on anything she has missed. She is not getting as tired now. When she first went back to school she would come home and lay down until tea time. Now she only goes and lays down if she has had a hard day. She uses a small bag to carry her basics and has a set of text books at home and at school. Her friends help her carry anything she asks them to. Amber's teachers allow her in and out of class early so that she doesn't get caught up in the rush, I think they're worried someone will knock her down the stairs. (I worry about that too).
She has taken the photos that I took of her stay in the hospital to school and the 'boys' have apparently been very interested, especially with the 'gory' ones of the cut after 4 days. They still ask her how it is.
She still has 'numb' patches and can't feel along the 'cut', she also gets those annoying phantom itches.
Isabelle try to take some photos as Roseline won't remember much of her stay and it helps with the people who think its not a big deal.
Best wishes.
Cheryl.

Alison
08-21-2004, 10:56 PM
" It helps me to tell her about the big things, like the fact that she will never have the same mobility. "

Even though the movement/mobility that Roseline had before surgery will never be quite the same after the surgery. Depending on how long it is (especially it it is going down to about T11 and definetly if going into Lumbar) yes she won't be able to quite bend the same as before the surgery and there will be some things that she can never do again (or are highly suggested against). But as time goes on she will find her strength and movement does start to come back. And if she finds she can't do something, she'll probabaly find out a way (even if it seems impossible you often can find out a way). Eventually she'll find unless people know about her fusion or see her scar they won't see her as being any different. My fusion does not go into lumbar; it goes to T11 and I have found (five years post fusion) that I can do lots of things people can't such as bend over and touch my toes and it takes a lot of convicing for them to believe that I have a spine fusion.

I'm guessing Recess is where you have a snack and a play in the playground. Even though she won't be able to participate in sport and run around much in the playground for awhile (usually about 6 months for sport) I would still suggest going to sport (even if only every so often) and definetly going to recess. At sport she could either help the teacher in some way or get involved by watching what was going on and sitting on the sidelines cheering other people on. Then other sport days she could perhaps go to the library and catch up on homework/read/etc. In the playground even though she won't be able to really "play" for awhile could she perhaps play less rough games such as kicking a ball from person to person (whilst you are standing still), playing cards or marbles, she would just have to remember to be careful to not get hit in her back (trust me it hurts lots) or get pushed, and that all teachers were aware of this (esp for the ones who are on recess duty and it does help having all teachers in the school being aware) I myself would feel lonely missing out on recess every day. Depending on how she felt, maybe she could go out to recess a few days in the week and not go out the other days.


"This reply is short, as I have problems posting replies and am getting frustrated to write for nothing so this is a test and if you have any advice about that you are more than welcome. Why do I login and loose my replies???" I know how you feel, I don't know why it happens, but I have had it happen to me lots of times and got very frustrated in the process. If once you have written your post you copy it (edit-copy) then if you do lose it when you try to send it you don't have to start from scratch and just have to paste it into a new post.

Alison

Isabelle
08-22-2004, 11:45 PM
Bonjour!

Alison: It's great to know that mobility is just a little bit different. That is what I hoped. Roseline will be fused from T2 to L1. I don't know if my approach is good in telling Roseline she will be affected. She really thought that everything would be fixed (as a matter a fact, it will be "fixed" but not exactly the way she intended it :). Sorry, I joke a lot!!!

Thank you for giving us a better sense of what her life in school will be... it really helps.

Thanks for the tip about cut and paste... that will do the trick!

Cheryl: Thank you also about all that school information, I am sharing all that info with my daughter, and she feels more confident to know what to expect. Great tip about the pictures. I will do that! Roseline is already saying that the scar will be fine as it seems to be a trend, after tatoos and piercing. As a matter a fact she already has a lot of scars and she doesn't mind it (yet?!) She was only missing one on her back!!! Believe it or not, she is looking forward to that := She is something else!!!

Annie: First, BRAVO! You seem to have a lot of spirit. I am just amazed. I read all your comments and suggestion with a lot of interest I think we are lucky because Roseline is not into sport. What I mean is she is not very physical, so at least she will not miss her favorite activities, like you had to sacrifice. I wish you all the best, and I really appreciate that you took the time to answer me. Gook luck with everything! Hope you are enjoying the Olympic Games!

Isabelle