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TX Mom
05-28-2004, 12:10 AM
Wow! I've been reading the posts for past few weeks and have learned so much. My daughter, 15, is having posterior fusion surgery June 7. She was diagnosed with scoliosis at age 10 and wore a Milwaukee brace faithfully for 4 years. Her back continues to worsen. Currently, she has a 39 thoracic curve and a 50 degree lumbar curve. It has progressed 5 degrees steadily the past two years.

So many questions, so many concerns. First, did anyone rent or buy a hospital bed for home use? I've read about raised toilet seats. Would you recommend getting one? Any other suggestions to help make her more comfortable is greatly appreciated!

Thanks!

Alison
05-28-2004, 07:15 AM
Hi TX Mom

Here is part of a reply that I gave in the surgery post to a mum whose daughter who has just been through surgery:

When your in the hospital there will be an OT (occupational therapist) 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)


I don't know what the system is like in America, but here in Western Australia (Australia) you are able to hire / borrow equipmtment such as raised toilets seat frames from the hospital or hire them from "invalid aids" equipments places such as the Red Cross. I don't think hiring a hospital bed is greatly necessarily as your daughter would find her own bed a lot more comfortable (unless it is a water bed), she might need a different pillow under her head (if hers is really squishy) and probably some pillows as support around her when she comes home from surgery. I however would highly recommend getting hold of a toilet frame (the raised one that goes over the toilet). After surgery it is pretty hard to get down to a normal toilet, because you are pretty stiff and sore and they usually have arms on them which gives you extra support/security when getting up and off. We borrowed from the hospital at first and continued to use it for a long time (2 years- it was a public hospital and in Western Australia they do not charge for loans like these) and then dad replaced the bowl part of the toilet with one that is "disabled height" which is like still having the toilet frame. Another option might be to install rails on either side of the toilet.

Alison

Ps In case youre curious I am fused from T2 to T 11 and my curves were before surgery over 60 degrees the top curve and just below 60 to bottom curve and now they are only a couple of degrees below that (about 59 top and 58 bottom approx)

lily
05-28-2004, 11:52 AM
Alison,

You mean to say surgery only got your curves down a tiny bit? Why is that, do you know?

Lily

mumof5
05-28-2004, 05:43 PM
My daughter Amber had a double fusion on May 12th. She was fused from T4-L4. We have found that coming back to her own bed was wonderful. We have one of those shower heads that Allison mentioned. Yes get one if you can, and a chair. They make things so much easier, especially if you have to help (you don't get so wet) unless you let them have control and they squirt you. As Amber did during her first shower in hospital. Amber has not needed the toilet frame and has worked out her way of getting down there. She started this in the hospital. Shoes that she can just slip on are good. That way when they get you to help you can't get into trouble for laces being not right etc.. Other than the shower we have not needed anything else. I'm not sure of the exact correction that Amber got from her surgery but she was at T- 68 deg and L- 63 deg. The surgeon told me when I saw him straight after sugery that they think they got down to less than 30 deg, probably more. I haven't spoken to him since she had her last x-rays done so we'll have to wait another couple of weeks to find out for sure.
While I'm here (I hope you don't mind Allison) Allison's surgery was holding not correctional.. So don't think that the surgery won't give a good result.
Good Luck, I hope all goes well.
Cheryl.

TX Mom
05-28-2004, 07:40 PM
Wow! Thanks for the information! How is your daughter's flexibility since she had surgery? I found out today that I won't be able to be with my daughter when she is in ICU. Is that correct? This has really upset me. I thought I'd be able to make sure she was taken care of.

By the way, my daughter's name is Allison, too. However, she goes by Allie.

Teri

mumof5
05-28-2004, 08:32 PM
Amber's surgery took 6 1/2 hours then she was in ICU for 19 hours. It took them 2 hours to get her there from recovery. I was allowed in the ICU with her. The hospital that we were in allowed to relatives per child to be with them. I slept in a parents hostel room while she was in ICU and when she moved to the ward I stayed in the room with her. Your daughter may not need to go to ICU but you can always check with the hospital before hand as to whether or not they will let you in, even if it's just for a little while. Hope I helped.
Cheryl.

Alison
05-28-2004, 09:00 PM
No I don't mind at all :-). I only mentioned it because it seems to be often asked on this forum. I hope TX mum that your daughter will get the very best correction possible, my scoliosis story and surgery is not the "normal". I think i better explain an abriddged version of "my story" a bit more, so I don't put anyone into shock :-)

As I've said before I was diagnosed with idiopathic infantile scoliosis at the age of 15 months old and with my parents persistance was put into a brace at 18 months old (when I was diagnosed thigs like serial casting were not heard in Australia). My curves were roughly high sixties top and high fifties bottom. The brace and I were friends for the next seven years, where my curves went up and down. And I was able to come out of the brace at seven because the curves were sitting stable at about 23 degrees. For the next three years we watched, waited and watched. And I felt "normal" because even though I felt normal in a brace because I had not known any different, I was really, really normal. And then I hit puberty.

There they went back up, they were gradually climbing back to their originals. It was decided when I was in year 6 (11 years old) that I would go back into a back brace. Yes we were "running out of time", but there was this one last "chance"

However getting a brace was not just easily as one might think. There are only two hospitals in Perth (Western Australia) that are able to do back braces (the childrens and the spinal) And for a long time democracy had been brewing and politics, and the hospital bigwigs (I can't 100 percent remember this), were getting ALL THE BLOODY money and there was no money. Then for the next six months my surgeon fought, argued (my dad even was on the radio), fought argued, tried to think of alternative options (my dad even made a back brace bed) and still no success. My orthapedic surgeon even had a heart attack over the stress of it all (there were fourteen people waiting for a back brace, lots in wheelchairs, and the equipment there but no money) And then suddenly the money appeared. I gt my brace, but we had run out of time, the window of oppurtunity passed.

But I did wear it faithfully for the next two years, whilst the decision for surgery was made and a date organised. My curves had always had rotation and were a little stiff (but still reasonably flexible). If the window of oppurtunity had been able to be done (we never will know but perhaps), the curves would have come down to a little less, had a bit more flexibility in them, a "better" result from surgery gotten. Thus when the surgery went ahead, we all knew that it would be a holding operation because the curves were too stiff and no flexibility. My surgeon was surprised that he did get a couple of degrees of correction.

I'm sorry if I'm shocking anyone, I don't mean to,but maybe I've explained my slight frustrations a bit more :-)

Alison

PS I would have started a new post,but I thought it also answered Lily's question, so this is why I posted it here. It is a bit of an abridged version, but I hope it explains it.

Peggy
05-29-2004, 09:02 AM
Hi,
My daughter was in the ICU 6 days and I was able to stay in there all the time. I could even sleep in the rocking chair at night if I chose. Most nights if she was resting pretty well I slept in a room across the hall. But they let my husband and I stay in there 24 hrs if that is what we wished. Are you having it done at a children's hospital? I think that makes a big difference in their policies with parents and families. Good Luck.

mumof5
05-29-2004, 07:18 PM
Amber's surgery was done in a children's hospital. I could have stayed all night with her in ICU but there was no where to sleep. She was that out of it she slept all night anyway but the nurses said that they would call me if she woke up through the night or had any problems. Every thing usually goes better than you are trying to prepare yourself for. We all know how hard it is and what you are going through and it's easy to say but keep positive. Make sure you have something to do during the surgery. I found it hard to read but I couldn't bring myself to leave the hospital. There were lots of people on and off in the waiting room, everyone sitting quietly, I would wander off, get a coffee, come back and talk to the others that were waiting. Some didn't want to talk but others did and it helped to pass time and took my mind off the waiting. It also was good when I'd bump into the same people days later and they'd ask how she was going and it gave me a chance to hear about another kid whaich did make it easier to deal with what we were going through. Hospitals are such boring places it gave us something to talk about.
One thing I didn't mention before that we got for home was a baby monitor. If you've read my other posts you would about this. It has given me peace of mind knowing that I can do stuff around the house and still hear everything that she is up to. Don't feel that you are alone there are alot of people here to help.
Cheryl.

paulasue2
05-29-2004, 08:39 PM
Hi, TX Mom,

I just wanted to add my "two cents worth" regarding home preparations. My daughter had surgery in March of this year (T4-L2). By the time we came home from the hospital, she had figured out the toilet thing and did not need a raised one. I think the need for this might depend on how low the fusion will be. She slept every night on her own bed, and for us anyway, a hospital bed would have been a total waste of time and money. She did need a lot of "propping" with extra pillows for about a week after she came home. At first she was most comfortable with her upper back elevated a little, then her legs, then she preferred sleeping on her side, and after about two or three weeks, she was back to sleeping on her stomach (her old preferred position). I had asked her doctor if the stomach-sleeping was OK, and he said that as long as she was comfortable, she was not doing any damage. You need to keep sight of the fact that most of the kids heal and adapt amazingly quickly, and all of the things you need to do to help them be comfortable at home are going to be very temporary. We put a plastic yard chair in our shower for about two weeks, but found that she stopped using it after a only few days. But, I think it was good that we left it there, just in case she felt woozy or tired. Definitely get an extension hose for the shower head. But, the things that we used the most to help her be comfortable, were lots and lots of pillows - all sorts of sizes, shapes and puffiness. We are now two months post-op and we often completely forget that fact that she has just had surgery - she moves and acts so much like she did before it. Hope this helps a bit!

TX Mom
05-30-2004, 02:45 AM
Thanks for the input! There is so much to think about and it helps to read about other's experiences.

My daughter doesn't want to talk about surgery. As I tell her things to expect, she says "I just want to get it over with." I haven't even told her about the accommodations she'll need other than she's moving downstairs for a few weeks because stairs will be difficult. From your experiences, how long post-op until stairs were managable? Do you think I should tell her ahead of time of the different things she'll need such as the shower seat to prepare her? She's been difficult in the sense that she doesn't want to know too much. I, however, want to know all I can to prepare myself?

mumof5
05-30-2004, 05:47 PM
I felt exactly as you do. Amber didn't want to talk about her surgery but was involved in getting everything ready. I found with Amber that even if she appeared not to be listening she was. All you can do is be supportive. Expect her to get angry or snappy at times, quiet at others, it's a way of coping and the people closest cope it. I know it's hard but try not to snap back, I only snapped back once and Amber's reply was "You don't care what I'm going through'. She knew that wasn't true. But on the other hand you can't let them walk all over you.
Amber's bedroom was moved downstairs before the surgery and we set it up together with a small T.V., PS2, desk, comfy chair etc. I put a cork board up so that get well cards, pictures etc could be put up.
Amber is still using the chair in the shower. As her fusion went to L4 she has pain when she stands still for too long, hence the need for the chair. Amber managed stairs a little over a week after coming home. She gets up and stays downstairs for awhile, when she is ready I follow her up the stairs (in case she needs help or support) then she stays upstairs until she wants to lay down again. Then I walk in front of her on the stairs.
I'll write more later.
Cheryl

TX Mom
05-30-2004, 09:22 PM
Thank you. It sounds like our experiences are similiar. Allie just told me she doesn't want to go for the tour of the hospital when she goes in for her preop appointment. I have tried to tell her that it may be less scary if she sees where she'll be. She tries to be so strong and yet I know she is scared to death.

When you told your daughter goodbye before surgery....any advice?

Thanks again. Teri

mumof5
05-31-2004, 02:14 AM
We weren't offered a pre-op tour. But I have just asked Amber if she had of had the chance would she have gone. She said NO! I can't say I blame her. Our experience: We had to go into the hospital a day early as Amber needed to have some heart tests done before the surgery. (They were all good and were only done because Amber's father died from a heart problem and they wanted to make sure that she had no problems) On the morning of her surgery (Wed) they came around 8.15am and gave her a pre-med. The surgeon came to say hello ( then caused us a panic when he wanted to change from doing the whole lot in one go from the back. To 2 surgeries, bottom half from the front, then a week later top from the back.) Anyway then she was taken down to the theatre. Amber does not even remember this. I gowned up and went in to the anaesthesia room with her. The surgeon came back and asked us what we wanted to do. I told him he was the smart one and knew how to make those decisions. After a bit of questioning and umming and ahhing he said OK we'll go ahead as planned. (I hope no one else gets that added stress) .I held her hand while she went off. They used a mask as she hates needles. I just talked to her, tried to be comforting & confident. I had a few tears as we were going there but the nurses were great, one put her arm around me, which made me smile because I'm 6 foot 1 and she would have been about 5 foot 4. As Amber went to sleep I said I'll be right there when you wake up. I won't be far away. A lot of nonsense stuff to keep her (& myself) calm. Waiting was the hardest part. Amber remembers absolutely nothing. I took lots of photo's and Amber really liked looking at these later. Try not to let Allie see you get upset, it will only upset her and she'll be trying to be strong for you. Amber has no memory of the first 3 or 4 days, even though she was talking and sucking ice cubes etc. Even the first time getting up out of bed.
So don't worry if she doesn't go on the tour. She won't remember being there anyway. If you are staying at the hospital make sure that you take a book or something as you won't have much to do the first few days.
I hope I have helped.
Cheryl.

Alison
05-31-2004, 03:52 AM
I would just like to give you what I remember from a patient's point of view. I remember the start of the morning and I had to go and shower with the special soap, and then it hit me that this really was it, it was there that I started to cry. I was then given the pre med and then Mum and Dad came in. The one thing I was thankful for that neither Mum or Dad cried (well at least not around me), mum told me later that she cried when I was in surgery because she knew life would never be the same for me, because I was pretty upset and seeing them upset would have made it a lot harder. What I remember them saying was see you soon, we love you very much (and tears are welling in my eyes at that memory). One thing that you might want to check, I know this is a little babyish but I was allowed to take a teddy bear/soft toy with me up until the pre-op bit, which gave me a little bit of extra comfort. Even though the hospital was some distance from were we live, Mum went to work and Dad went to work. Mum said this was hard but she needed to do something "useful" to take her mind off waiting. My one piece of advice is cry once Allie has gone into surgery, but try not to beforehand.

Alison

TX Mom
05-31-2004, 01:30 PM
Thanks for the advice on the teddy bear. Allie loves stuffed animals and I'm going to encourage her to bring one...she has so many on her bed, I wonder which one she'll choose! :)

I have been trying to be extra strong for Allie. I only cry when she is not around. I am praying for strength. Thanks for taking the time to write...it really helps!

Teri

paulasue2
05-31-2004, 09:08 PM
Just wanted to add a comment about our experience with stairs - part of what my daughter had to be able to do with the hospital physical therapist before she would be allowed to leave the hospital, was walk up and down stairs. This she did on about the 5th or 6th day. Her bedroom is upstairs in our house, and she slept there and came up and downstairs (slowly!) from the time she came home. We put a soft rocking chair with a high back in her room and this seemed to work as a place for her to be upright - she could lean back a little bit and had good head and back support. She did do the pre-op tour - did not want to do it at first, but told me later that she was glad that she had gone. The people conducting the tour were patient advocates, and the leader gave us some good pointers about little things that were useful during her hospital stay. I know what 'mumof 5' means about the snappiness - I lost my temper a time or two and felt terrible about it - but you are the one that will probably be on the receiving end of some serious grumpiness and sometimes you just have to say "enough." I had a sort of speech prepared for when my daughter left for surgery so I wouldn't get all "tang-tungled", but we ended up having to wait two hours for the doctor to get there (he had a morning surgery that went long) and when he finally showed up, there was this huge flurry of activity of nurses, anaesthesiologist, doctors, etc., that kept us sort of on the sidelines, and then suddenly it was time to go. We both kissed her and told her we would see her shortly in the wake-up room. The doctor sent messages to us in the waiting room throughout the surgery telling us her status and estimated time remaining, so that helped enormously with the wait. I think I read a book, but honestly, I may have just stared at it for hours. She didn't want us to take any pictures at all, and tells me now that she can barely remember any of it.

Alison
06-01-2004, 12:14 AM
I think this might have been said before, one thing which I would highly suggest taking to the hospital is a camera (even if Allie protests or says she doesn't want any pictures). I actually made mum bring a camera (she thought I was loopy), (I wanted to know what I looked like when I was asleep) but she took a picture before surgery (of my back and the electrodes on my head), and then when I was in High Dependancy Unit, she took some pictures of me "drugged out"/asleep and then a couple when the scar was exposed for the first time, and getting up for the first time. The ones that happened in high dependency unit were the ones that I was grateful for the most later, because I have very little recollection of being in there and of course when I was asleep. Even if Allie doesn't want to look at them straight away, she will probably want to look at them sometime along the line. Also measure Allie's height before surgery, and then after surgery (it is interesting to see the difference in height that you usually get)

Alison

PS nursing staff are pretty accomadating, Mum checked beforehand and as long as she didn't use flash in high dependency unit they had no problem

TX Mom
06-01-2004, 07:59 AM
Great suggestion. I have been thinking about taking a camera because I think she'd want to know. I appreciate your comments.

bone
06-01-2004, 01:35 PM
Hi-
What exactly is posterior surgery? and wont she be in a cast when she comes home?

How long will she spend in the hospital?

bone in detroit

spincon58
06-01-2004, 06:00 PM
Hi bone,

Posterior surgery is when the surgeon makes an incision only from the back....and for casting...its a doctors preference...

TX Mom
06-01-2004, 09:20 PM
Posterior surgery is an incision from the back side. This is a more common approach for patients with flexible thoracic curves.

My daughter's surgeon does not cast nor brace after surgery. She'll probably be in the hospital 6-7 days.

Teri

pcdoty
06-02-2004, 09:19 PM
I would recommend a hospitial bed, a raised toilet seat. My son had a rupture disc at the t8 and t9 , Had to remove a rib and use for fusion. I pretty much did everything for him for two weeks. Getting up and down was very difficult. things improved after the chest tube was removed. The Dr. told me surgery was similar to scoloisis so I check back here to see how people are healing etc.
I would recommend buying baby wipes, hand held shower head.

Alison
06-04-2004, 12:55 AM
Hi Pcdoty

I'm not sure what a ruptured disc is but it sounds serious. Your doctor may have been saying that the actual surgery that your son had is similar to a spinal fusion but not necessarilly the aftercare I thought I might explain a bit more wha tit is like after a spinal fusion ( I am fused from T2 to T11). When you are in hospital after surgery you are immobile for the first few days, have a cathether in place and are basically unable to do anything for yourself. By about the third day/ fourth day they sit us up for the first time. Then the next day we are standing, then begin to walk. When we go home we are not able to lift anything, twist etc, but are able to walk fairly normally and do most personal care things. A lot of people buy a shower hose thingy for the shower, because you tend to have showers at the start sitting down. Someone often helps you with the shower at first (it is hard to reach your back, sore to lift your hands up above your head etc). Gradually things improve and you are back to having normal showers again, and then gradually over time able to do more stuff such as carry more and over time more sporting activites etc. Hope this sheds a bit of light for you (even though it is very brief)

Alison

pcdoty
06-04-2004, 01:20 AM
Yes, I know my son had a fusion, I know that your fuision is a bit different. My son, had a cathatar, a chest tube. They had to cut him near the spine he has an 18in scar. They had to remove his rib, cut his aorta, and put him on a heart and lung machine for 6 1/2 hours to do the surgery. It was quite extensive. I also, have a nephew who just had the same kind of fuision as most of the people posting here. I know they are not the same but similar healing. So, it helps me as a mom to read about the different stages etc. and the healing as people are recovering. I often offer up a prayer as I read when one is about to have their surgery. We all often have the same fears. The doctor told me the recovery is similar to a scolois patient. my best to you.