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  #1  
Old 05-11-2011, 09:26 PM
MySon MySon is offline
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Default Home from Surgery :)

Hi Friends (thank you so very much for your support through private messages and emails - we couldn't have got through this without you xoxox)

Today we arrived home (3 weeks since we left) - the flight home was no problems - only bad thing I did was gave him Tremadol at 6am and Endone at 10 am - after he walked to the departure lounge he broke out into a sweat, nearly fainted and threw up - but seemed to be ok when I got him on the plane. Maybe a combination of the walking, sitting and drugs.

The surgery went well - 5 hours, T3 - T12 (less than expected T2 - L1) and reduced curve from 55 degrees to 18 degrees and he grew 4 cm.

A very stressful 3 weeks. I was pleased I went private - Doctors, Nurses and Hospital all excellent. I slept at the Hospital every night except the first night in Intensive Care (no room for Mothers there).

My advice to others is the weeks after surgery are very up and down. A lot of people said the waiting was the worst part - true it was hard, but the initial recovery was also very difficult. Managing pain was stressful for me as I didn't like to see him struggling.

I did get run down as others had advised and ended up with Pluracy myself.

For the benefit of others considering or preparing for surgery I will write up a summary of our story tomorrow.

Must haves are:
* The book - Scoliosis Surgery: The Definitive Patient's Reference
* A diary to record medications and times.

Here's hoping for a good nights sleep in our own beds (fingers crossed).

Chris
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  #2  
Old 05-11-2011, 10:17 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Home from Surgery :)

Great to hear that all went well. Things should be a little more easier now that your home in your own environment.

Still can't get over the Tramadol then Endone...........Whoa!!!!!!!!!!!!!!!
I know that this combination would definitely have sent me into the sweats as well.

Hope the recovery starts to smooth out for him.

Chris, don't overdo it. You still need a lot of rest yourself.

Best wishes.
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  #3  
Old 06-11-2011, 04:06 PM
MySon MySon is offline
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Default Re: Home from Surgery :)

Surgery Summary
Preparation day and operation day - stressful but too busy to have much time to shake. Doctors and Nurses treated everything as very routine.

5 hour operation - Doctor came to see me after 5 1/2 hours to say it all went to plan. It did take another 3 hours for him to come out of Anasthetic and that was a worry.

Intensive Care - the beeping machines, low blood pressure and heart and oxygen readings really stressed me out. The staff in ICU are very capable and so good for handling my concerns.

Back in the Ward - it was worth going Private - we had a room to ourselves and I had a bed to sleep in. Nurses responded very quickly - checked him every hour for blood pressure, oxygen and feeling (to see effectiveness of epidural). Dane hated the catheter and found the epidurals painful. A couple of times the pain got to 10 for him (very hard to get through) but the nurses would give him a bolus shot from the epidural - they responded quickly and took control. I did find it unsettling when there were so many nurses and occassionally they sounded unsure of the equipment "why is it set to 15ml shouldn't it be 2 micrograms...." quickly made me realise I had to listen and write down medications etc from that point forward. But they did do a good job - just when it is your child you want the absolute best.

After the catheter and epidurals were out he seemed happier. He even got up by himself on day 3 after surgery to shower and go the toilet.

The ups were always followed by downs - that it why I couldn't update the forum throughout the ordeal - cause everytime I would tell someone how well he was going he would have a really difficult time.

He has problems with urinary frequency and seems to be more crooked than before the surgery but they tell me that will "fix itself" but I won't fully relax until I see him walking straight. His spine is straight but his whole body is on a bit of a lean. The surgery did T3 - T12 and reduced the curve fron 55 degrees to 18 degrees. He didn't need a blood transfusion but they did give me extra platelets in ICU when his blood pressure was so low.

When we left the hospital they recommended we stay in Brisbane for 7 - 10 days before the 4 hour trip home. That was good advice we needed it - I had to continue quite a few pain killers during that week that was still very much a one good day, one not so good day.

I am not real sure on the pain killers - I am now trying to get him through on just panadol cause everyone said not to continue on the Endone for too long. He is just managing I will see the GP on Monday.

How long did everyone else continue the pain killers for? We are 12 days after the operation now. How long do I keep using Panadol - or should I change to something else?

Anyway, a special thankyou to my new friends from this forum - your regular messages, emails and constant prayers and positive thoughts really helped us.

The book that Christine leant to me The Definitive Guide ... has been invaluable. Everyone going into scoliosis surgery must read this book!!!

I have to return to work next week (and I work away from home) so my husband will have to be the carer for the next few weeks. Hope it all goes well - I will try to continue with this valuable site to keep you posted and help others just like you have helped me.

Take care everyone
Chris & Dane
xx

Last edited by MySon; 06-11-2011 at 04:11 PM. Reason: Wasn't finished
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  #4  
Old 06-11-2011, 04:32 PM
Christine Christine is offline
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Default Re: Home from Surgery :)

Hi Chris

It seems like Dane and you copped it hard while in hospital. Even a week seemed to be monumental to me while I was in. I can't imagine three weeks! Things do get better, but sometimes slow and I still feel like I am where I was two months ago.

Once Dane is more mobile and walking more, his body should re-align itself as it is supposed to, when the other curves correct themselves to adjust to the correction of his thoracic spine. That is why walking is paramount (insist he goes for regular walks!) throughout the long recovery. He will be stiff and sore now, but his bones are young and bouncy so he may come completely straight. I have heard this from others on the forum who had straightened up, as it was one of my concerns. I too, was told it would sort itself out, but hasn't yet. I am like a boomerang. I think my ribs being still humped (back RHS, front LHS) may be why it is wonky and won't go straight. I do therapy in the pool, and some balancing exercises, but no change yet. Just waiting I guess until my 12 months are up. I have old bones that are stubborn bones!

I can't agree more on the Private Hospital recommendation. For both adults and children. It was nice to have your own space, and you really do need and appreciate it.

Dane's drug round-up sounds like he is a walking DD cabinet!!! Amazing he could keep it down. Do get a full blood check in a few months to see how his health going even if he appears well.

So happy to hear you are very well organised. I still have to keep track of my medication. I have a brain like a sieve...

Love to you, Dane and your family xxx
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  #5  
Old 07-11-2011, 03:51 PM
Rach's mum Rach's mum is offline
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Default Re: Home from Surgery :)

Hi Chris and Dane,

Glad to hear that the surgery went well and Dane is on the road to recovery. Rachael had surgery nearly 4 weeks ago and she too has good days followed by not so good days although the bad ones are getting less.

She too was leaning to one side once she got home from hospital. She started nice and straight when we first got home and then started leaning over again after a day or too which did concern us although we thought it would probably correct itself as she recovered and it has now. Initially she was so sore in her ribs that she was favouring one side of her body, causing her to lean.

I just took her to the GP the other day to get more Tramadol and Oxy codone as we had run out of what the hospital gave us and the GP was happy to prescribe more. She doesn't use it regularly but its good to know its there if she needs it. Before bed is usually the time she needs it most as she is still waking a lot in the night and gets quite sore. Also whatever activity she has done in the day catches up with her by then.

I also found it very handy to make up a spreadsheet to record the time and dosage of all her medications when we got home so I know exactly what I have given her when. She was on too many to keep it all in my head! Also helps to get a picture of her improvement in her dependance of the meds. You can write it all on a piece of paper if your not good with a computer.
I did ask the GP about Panadol and he said its fine to continue it as long as you don't exceed the max dose in a day.

I Just got home from our local shopping centre where we hired a wheelchair (free) and went shopping for a couple of hours. It was a good change of scenery for Rach, she is getting sick of TV! She felt slightly awkward about being in a wheelchair at first but soon got over it, she enjoyed her outing and still managed to spend plenty of money! (hers not mine)

Hang in there!
Sonia
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  #6  
Old 07-11-2011, 10:02 PM
MySon MySon is offline
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Default Re: Home from Surgery :)

Thanks Christine - I hope you can still make further straightening improvement - even if it does take a bit longer than the kids recovery. I will keep hoping for you. You deserve it - cause you are such a lovely person.

Rach and Sonia - thanks for the post and so glad to hear your operation is also behind you and you are progressing with the recovery.

It sounds like we are still on track and having a visit to the GP today reminded us about how quickly he really is returning to normal after such major surgery.

He did prescribe more Tremadol and some Endone to keep in the cupboard just in case. He reminded us that it is okay for him to just take it easy lots of resting and recovery.

He does need to walk more but we seem to have to push him a fair bit to get him out of the bedroom (he so loves).

Take care all
Chris
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  #7  
Old 09-11-2011, 08:58 PM
tracy tracy is offline
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Default Re: Home from Surgery :)

Hi Chris,

So glad your home and Dane is recovering. Rest, rest and a bit more rest, is the key for now. Im presuming that Dane will have a full 12 weeks off school, with x-mas holidays? So that will be great for him. And you will be more comfortable sending him back next Feburary. Just so relieved Danes ok,and great news the fusion was less than expected. We probably passed each other in the corridors, looking for vomit bags, pillows etc....

All the best to your family.
Tracy x
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  #8  
Old 10-11-2011, 06:48 AM
Christine Christine is offline
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Default Re: Home from Surgery :)

Hi Chris

About the painkillers...I can't imagine not being on them! I had another visit to a different GP yesterday at my clinic and he was quite insistent I stay on the Oxycontin for as long as I need them. So I have an authority coming for yet another three months. His opinion was why make things worse by having more pain to deal with. I have been concerned about being on them so long, he says not to worry. Mind you, they still don't knock the pain out as much as I wish, I am still super sore (like I have a hot slab of A4 concrete on my back) and it wears me down quite a lot at the end of each day.

My surgeon also was a bit blasť about it too, said not to worry. If I need it, take it for as long as I need to.

Dane must be healing well to be only needing panadol. So my advice is don't worry about him being on anything for an extended time, as reducing the pain helps with rest, not to mention the emotional levels in dealing with 24/7 pain.

SONIA: Very pleased about Rach straightening up! Such good news.

Christine x
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  #9  
Old 13-11-2011, 09:04 PM
MySon MySon is offline
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Default Re: Home from Surgery :)

Hi everyone

A quick update on Dane's progress.

His Dad is not so efficient with the pain killers - the first day I was at work and got home to check he had continued my thorough record keeping. He said he didn't give him lunch time tablets saying "he didn't ask so I didn't give him any" - aarghhh - of course I was up that night helping him get the pain under control again (still had the endone in the cupboard for emergencies).

But it is a week later now and Dane is managing on 8 (2 tabs 4 times a day) panadine. He doesn't complain about the pain - he rests a lot and says it sometimes gets sore after walking - but he is straightening up in the shoulders and less of a lean. His shoulders are a bit rounded - but that might just need more exercise.

Scar getting very itchy now but I think he is going really well.

Chris
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  #10  
Old 13-11-2011, 11:07 PM
Angela Angela is offline
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Default Re: Home from Surgery :)

Hi Chris,

Glad to hear Dane is doing so well.

Keep in touch,

B. XX
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