anxious mum

[lorrie]

Hi Elsa
I've a feeling I might have been one of the dismal and depressing stories which helped frighten you out of your wits and I just wanted to try to reassure you! In spite of the complications we had, Genevieve is now doing well and is back at school (just - went back yesterday) and we've been cleared to do bathing and hydro therapy and some physio - basically 'virtually anything goes but stop if it hurts and let her have a rest when she's tired'. we don't have to worry about lifting restrictions etc as Genevieve's disability precludes that anyway.
In spite of the dreadful time we had I do think it was worth doing - Geeve's back is a beautiful shape and she can sit more easily and it will protect her future quality of life. Also, we were in hospital for a whole month and fair number of other young people were in having spinal fusions: we were the only ones with problems - the others came and went and left us behind. All I want to say is that our experience was far from typical and Genevieve was always going to be a high risk patient because of her other problems.
Best wishes
Lorrie

[phaden]

It is just very hard to know that your child has to face this type of major surgery and will be in so much pain.

Surprisingly, considering what they do to the child, there really isn't that much severe pain. Caitlin experienced a great deal of soreness and stiffness, but, due to the aggressive pain management policy at our hospital (PCA, epidural, paracetamol suppositories), she was never in real anguish. In actual fact, the greatest source of discomfort Caitlin had was post-surgical constipation, which was a real pain in the tummy. (You can read Carmell's posts about her experiences with this problem as well.)

Perhaps you would find it reassuring to talk to your hospital about their pain management plan?

Hang in there - Patricia

[marmyte]

the anaesthetists at stanmore are great, mine was fantastic, he visited me every day and answered even the most basic questions, spent a fair amount of time with me. amongst patients, anaesthetists are often known as "good cop" and surgeons are "bad cop"

[dancermom]

Thanks for the reassurance. Our doctor told us that he usually goes by pulse rate, blood pressure and physical signs versus rating the pain on a scale from 1-10. He said the nurses don't always like him, but he prefers to go by the stats. I do know that my daughter will have the pump at first anyhow. I don't know how long that stays in. We still have to call the hospital to set up a time to go in and visit the ped ICU and see where things are located. I guess we will try to do that at the beginning of November.

[LeaEvelyn]

Hi Elsa,
I am a mother to a 13 year old boy, who has also struggled with scoliosis. He also had to have the surgery. In our case, we didn't have a choice. His curve was progressing very quickly. He was braced for 18 months. The brace only slowed the curve down, it did not stop progression. I'm not sure if you would like to read the story he wrote about his experience with scoliosis and his surgery, but if you do, it is located at www.spinekids.com. Just go under stories and click on Shane's story {his is one of the newer stories featured on this site}. I can understand everything you are saying about the anxiety we parents go through. I still can't believe we made it through everything ok. And believe me we had our share of hardships, but we made it through, and you will too. I found, the hardest thing I ever had to do in my entire life, was to leave the pre-op room, and trusting this man, his surgeon, to take care of my child. But trust him I did. Please know that what you are feeling is so normal. If you ever need to talk, you may e-mail me anytime at llentz5525@yahoo.com. As I said, we have been through alot, and I'm sure I could help you through this if you feel you need it. Take Care, and sweet dreams, for one of my problems was also not being able to sleep.

[elsa]

dancermom..

It seems we are both experiencing the same feelings at the moment. It is very reassuring to read other peoples success stories - lets just hope ours will be the same!!
I feel an affinity with Phadon from New Zealand when she said she is an olympic worrier - I know those feelings only too well being a person who has worried especially about her girls since the day they were born. !
Your daughter obviously used to dance so did my Hannah. She danced 'hip hop' at a class and has always loved dancing before she could walk. However the scoliosis has meant she gave it up about 6 months ago because her back just became so sore. We are all hoping after her recovery she will be able to resume her dancing.
I think the key is we must keep positive about all we are about to undergo and think it is for the long term good even though I still have feelings of why!
- but who are we to question we must just make the most of it and look forward to the day when scoliosis can be a thing of the past.
Take care and keep in touch
elsa x

[marmyte]

Thanks for the reassurance. Our doctor told us that he usually goes by pulse rate, blood pressure and physical signs versus rating the pain on a scale from 1-10. He said the nurses don't always like him, but he prefers to go by the stats. I do know that my daughter will have the pump at first anyhow. I don't know how long that stays in. We still have to call the hospital to set up a time to go in and visit the ped ICU and see where things are located. I guess we will try to do that at the beginning of November.

here in the UK PCA (patient controlled analgesia, morphine) tends to stay in until the chest drain comes out. i had my drain out at almost 4 days post op

[Lura]

Elsa,

Hi I am Lura. My son Alex had surgery March of 2005. There were several of us "moms" who were terrified and going through the surgeries around the same time, this site helps!! I've been negligent at keeping up on this site, life gets busy and the relief after surgery tends to keep thoughts of it at bay.

No matter what, moms seem to bear the brunt of the fear and the unknown and none of us want our babies hurting. Following surgery you will go from fear mode to survival mode where you will make you daughter do whatever she has to do to heal. This side of surgery is 100 times better!

Know that our thoughts and prayers are with you, and we are here for you and can actually say "we know what you are going through"! Have your emotions, cry, throw tantrums (away from your child preferably) you deserve it and it may make you feel better.

Keep in touch!

Lura