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Thread: worried mum from Australia

  1. #1
    Join Date
    May 2004
    Location
    NSW Australia
    Posts
    308

    worried mum from Australia

    I am a single mother of 5 girls. My eldest, Amber 14, has 2 60+ degree curves and is having surgery on May 12th. She has been booked in for surgery twice before and both times it has been cancelled (not by us). We now have to travel to Sydney instead of Newcastle which is much closer to home. She does not want to talk about her surgery and if I say anything to her she says I haven't thought about it. Maybe this is just her way of coping. She has developed a cold in the last few days and I am getting worried that it will be cancelled again even though she only has a sore throat now. Has anyone else had a problem with illness this close to the big day?

  2. #2
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Hi,

    When you go into the hospital she will meet with the aneseaolgist(sp) and he will determine if it's safe to have surgery or not...once my surgery was canncelled from this b/c I had a terrible cough...the surgeon was really mad b/c of cancelation he thought I was fine...so i had the surgery two days after...
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  3. #3
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Hi,

    When you go into the hospital she will meet with the aneseaolgist(sp) and he will determine if it's safe to have surgery or not...once my surgery was canncelled from this b/c I had a terrible cough...the surgeon was really mad b/c of cancelation he thought I was fine...so i had the surgery two days after...
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  4. #4
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Hi,

    When you go into the hospital she will meet with the aneseaolgist(sp) and he will determine if it's safe to have surgery or not...once my surgery was canncelled from this b/c I had a terrible cough...the surgeon was really mad b/c of cancelation he thought I was fine...so i had the surgery two days after...
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  5. #5
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    sorry for the double posting ..i think i pressed it twice..

    anyway..i'll say a pray fpr your daughter and hope all will go smoothly and she'll come out fine...good luck with the surgery.
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  6. #6
    Join Date
    Feb 2004
    Posts
    105
    Hi,
    Your daughter's situation sounds just like mine. She had a double fusion on April 15 for two 60 degree curves. A couple days before she went in she got a slight sore throat and runny nose. I was really afraid they were going to cancel the surgery. The surgeon said it would be left up to the anethesiologist. When we went in the morning of surgery they asked her how she felt and listened to her lungs, took her temperature. She didn't have a fever and her throat was just scratchy so they ok'd the surgery. I know if your daughter is running a fever its almost certain they will cancel. She has a whole week to get better. Hang in there and good luck. By the way, my daughter's surgery went very well and her curves were corrected to 15 and 15 degrees. Let us know how things proceed.

  7. #7
    Join Date
    Feb 2004
    Posts
    105
    Sorry, me again. I meant to add that my daughter also would not talk about her surgery. She changed the subject if I tried to talk about it. Didn't even cry about it till 2 days before. She still doesn't like discussing it after the fact. She didn't even want to look at her before/after x-rays but her doctor showed her anyway. Some kids just cope in their own way. She did fine and is recovering well emotionally too. However your daughter needs to handle it, I think she knows best what works for her. Again good luck.

  8. #8
    Join Date
    May 2004
    Location
    NSW Australia
    Posts
    308
    Thank you both, Amber's throat is sore but she does not have a temperature. She has been feeling sick in the stomach but I am hoping that it is nerves and nothing serious. She stayed home from school yesterday b/c of it and now I'm not sure if it is b/c she doesn't want her friends fussing over her. She is always quiet but we have a good relationship and I know she come around when she's ready. She goes for her pre-op tour & blood tests etc on Mon.
    I am finding the time difference a little weird. I also have not mentioned that Amber's father (the father of my first 4 kids) died 10 years ago om May 20th, I know this is on her mind too. The father of my youngest who is 3 left when I was 6 months pregnant and 3 months ago has decided to see her and is now threating legal action all the time if we don't do what he wants. This is affecting all of my kids as he practically raised them for 6 years and now will not speak to them. It's a lot for a 14 year old to have to deal with and I don't know how to make it easier for her. Any suggestions?
    Cheryl
    Last edited by mumof5; 05-06-2004 at 05:00 PM.

  9. #9
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Cherly,

    I'm sorry you have alot on your plate..please just focus on Amber now..you both need each other...she probally is feeling all sorts of worry but is not telling you...she wants to be brave for you...Look I'm an adult 45 and I'm scared to death of surgery imagine a 14 year old...stay happy and positive...buy a new shirt or CD for the hospital...I'll be thinking about you
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  10. #10
    Join Date
    Feb 2004
    Posts
    105
    Good Luck Cheryl. Just tell Amber to focus on staying positive and keeping herself strong for her surgery. I hope things improve for you and your family.

  11. #11
    Join Date
    May 2004
    Location
    NSW Australia
    Posts
    308
    Amber is going to school today. Her teachers have arranged for her to sit some of her half yearly exams two weeks early. Our school year is much different to America and high school here is currently in week 2 of term 2. All schools here have 4 terms. The school is being relly good and very suppotive of her. It will also give her a chance to see her friends before she goes in.
    As we are going so far from home she won't get any visitors while in hospital. From what you have all said I don't think she will notice too much much until she is nearly ready to go home. Does any one have a suggestion for an activity for her to fill in time as I'm not sure what she will be able to do. How did you parents cope during the surgery. Amber's curves go the opposite way to normal (apparently) so they think it may take longer as well but I'm not sure why. They have also said it brings a greater risk. Does any one know?
    Cheryl

  12. #12
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299

    Advice from a fellow Aussie

    My curves go the opposite to normal, but I'm not sure why it would pose more risk. I do know that my surgery was 8.5 hours but thats about it G'day from a fellow Aussie, I live in Perth WA. I had surgery on the 23rd of November 1999 for Infantile Idiopathic 60+ degree curves from T2 to T12. It was only holding surgery, not correctional. BUt I remeber it well, like it was only yesterday. And I would like to share some advice with you:

    : I remember when I went into surgery my Mum told me later that she absolutely bawled her eyes out, because she knew that my life would never be the same again. I know that this will be difficult but try not to cry in front of your daughter, I was so glad that Mum didn't cry in front of me, because I was pretty upset myself and it would have made it worst
    : Whilst I was in surgery, Mum went to work, because she didn't think that she could stand sitting in the waiting room, and needed to keep herself busy. I know because of the distance, this is not possible, but try and go outside or for a walk, or to the shops, because it will take your mind off it.
    : I was a year younger than your daughter at the time of surgery, but one thing i did appreciate when I was in HIgh Dependency/ ICU that mum brought me a couple of soft toys and hung them of the bed frame, and a bunch of balloons. Because the bed will most likely have a frame around it. It made it all a little more comforting and friendly
    :Consider taking one of your daughters favourite teddy bears to hospital. She may say that she is too old for teddies, but you can probably take it in with you to the pre- op bit and it is a little comfort when you are in so much pain
    : For the first few days, the little things brought me great relief. Such as dad carefully brushing my hairout, it was strewn across the pillow, getting me more ice (that's what you eat for the first few days), rubbing itchy spots, washing my face etc
    :Something to be prepared for, if your daughter has begin getting her period, it will probably come during whilst she is in hospital, don't worry the nurses are great in dealing with stuff like that, it comes usually because of the surgery stress on the body
    :Even though she can't have any visitors because of the distance, try and see if one of her school friends can organise a big get well card and get lots of people at her school to sign it/ write messages/, I wasn't able to have visitors either, but it hightened my spirits, to show that people still remember me, and were thinking of me.
    :When your daughter comes back to a normal ward, she probably won't feel like doing much, so T.V is a good activity or something like a discman
    :Another thought is I had surgery the end of the school year, and I was back at school at the start of next year, so your daughter would probably not be back at school until the very end of this term ie week 10 or 11 and definently the start of next term.

    I know that this probably seems a little all surreal right now, but it is for the greater good in the long one, I know this is a cliche, but take it one day at a time. I would like to offer you more advice to you and your daughter about the next steps after surgery, either through this board or either of these email addresses <a href="mailto:aliren53@y...hoo.com.au</a> / little_miss_jen86@yahoo.com.au


    I wish your daughter and yourself the very best of luck

    :-) Alison
    Last edited by Alison; 05-08-2004 at 12:52 AM.

  13. #13
    Join Date
    May 2004
    Location
    NSW Australia
    Posts
    308
    Thank you Alison for your message and support. You hear so many things and everyones is different it makes it hard to know what to expect. Amber's curves are lumbar T11 to L4 and thoracic T4 to T10 both 60+. The last x-rays showed the L4 to be "quite oblique" whatever that means and that L4/5 is only partially mobile which does not correct on bending. So he is unsure how far to go. He would prefer not to go to L5 but as we have only had one visit with this doctor I have not had the chance to ask. Did you have to wear a brace after you came home? Her teachers are not expecting her back at school this term so she will have lots of time to recouperate. I am concerned about the surgery but I know that it has to done and the whole family just want it over and done with. It is going to hard on every one to be so far apart and it looks like we may not be together for the 10th anniversary of their father's death. Westmead children's hospital seems to be really good even having their own tv and radio stations, library and a school heaps of other things. The first weeks home are worrying me as I don't know what her limitatons will be and I don't want her getting bored or unable to do the things she wants, so I would like to have a few new options for her. We live in a 2 story house so we have to make a few adjustments, but she has everything downstairs that she could need. Will she be able to manage a shower when shen comes home? how much help will she need?

  14. #14
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299

    reply from Alison

    I'll send one on her limitations / how much help she will need when she gets home soon ( i don't want to overload you :-) but here's a couple of bits of reply for you

    :After surgery and when I got home, I did not wear a brace. I think that was because mine was a purely thorasic fusion, not going into lumbar. From what I know, lumbar curves fusions + are put into braces (and some thorasic too, it seems to be more the curves which are "corrected" that go into braces afterwards) to ensure that movement in that area will not occur whatsoever, because more movement occurs in the lumbar in comparison to thorasic in fusion terms

    : When your in the hospital there will be an OT come in and go through OT stuff, mainly stuff about in the home. When I got home from hospital I had problems standing in the shower and I was also "worried" that I could slip and fall over. I would highly, highly recommend hiring / borrowing from the hospital / local hospital etc a shower chair and a raised toilet frame (it was hard to bend down low onto the normal toilet. As for needing help in the shower, I did have someone watch me for a few days getting in and out of the shower just in case I became unsteady, as you are still very tired after surgery and when you come home. Something I would also GREATLY suggest, is replacing the shower head with one of the adjustable ones (they aren't particularly expensive) they are like the ones in most hospitals. The adjustable ones are the ones that a long "cord" is in where the water comes out, at the end of the cord is the shower head and the whole thing can be taken off and hand held whilst you shower. I highly suggest it because even though Amber would probably need it to be taken off for her, she could sit in the shower chair / stool / some people have also used eskies to sit on but I think a shower chair is safer and wash herself. She would probably need someone to help her with washing her back and washing her hair (it is pretty sore to lift your arms up above your head)
    :Something else I've thought about for taking to the hospital is Ambers own pillow. Even though you don't a pillow in High Dependancy / ICU when you get back to a normal ward it is comforting/ more comfy to have your own pillow, and definetly a lot more comfortable to hospital ones. Something to talk about to the OT with will be things such as pillows, to see if Ambers is suitable, or if she might need a different one
    : Another thing for hospital, as soon as it is possible when you are back in the normal ward, get Amber back into her own pyjamas. It adds a little bit of normality back into everything. Nighties/ Night dresses are better than two piece pyjamas, because they are easy to get on and off, and there is nothing "pressing" on your back such as elastic.
    :Also, make sure you take a pair of grippy, non slip shoes that Amber can slip her feet into such as sandals, canvas shoes or reef walkers (more stable than slippers, but take slippers too)., When the physio starts with rewalking etc, I felt safer having shoes on rather than being in bare feet.
    : Just a little bit on when Amber gets home, she'll probably spend the first week or so having lots of little sleeps, cause surgery knocks you around a bit :-). One thing my parents made sure I did was that I got out of the house every day on a little "trip" after the first few days of being home. It wasn't anything major, just a walk down the street to the shops to buy a roll for lunch or some other little errand, or going to see someone on my street but it was good getting out of the house, as I think I would have gone absolutely bonkers if I had been cooped up in the house all day.

    I'll add to this soon, I just want to send it in small chunks because I know lots of stuff / emotions are going through your head right now, I don;t want to overload you :-)

    All the best

    :-) Alison

  15. #15
    Join Date
    May 2004
    Location
    NSW Australia
    Posts
    308
    Thankyou for all that. I already thought of a chair for the shower, I got one of those plastic patio chairs it's really comfortable but has lots of gaps for water to get away and it has non slip pads. I have one of those shower heads with the 'hose'. But I hadn't thought of the toilet being too low. I'm sure I'll be able to sort something out. I'm glad you mentioned needing shoes with grip, I wouldn't have thought about that. We are going down for the pre-op stuff tomorrow. Amber is starting to get a little bit worried about what will happen, the thing she is most worried about is needles of all things. We have to leave at 4.30am (with 5 kids scary, luckily the other girls are going to my mum's I just have to drop them off.) Should I put a stable chair near her bed so that she can grab on to it for support while getting in and out or will it just get in the way? I know stairs are out to start with but what about walking up and down hills? We live in a hilly area, but are only a few minutes drive to flat ground for her to walk and a 10 minute drive to the shops. I am doing ok at the moment. I'm one of those people that handle the bad stuff pretty well and save the falling apart until after everything is finished and I have a chance to sit down and think. I'm sure I'll keep it together in front of Amber and my other girls. They all know how concerned I am but we are positive.
    Cheryl

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