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jdurham
09-29-2005, 03:29 PM
Our daughter is tentatively scheduled for a January surgery to put a rod in her back for her 60 degree curvature. She is a special needs child, 12 yrs old but developmentally a 6 month old, and we have no idea what to expect. I have tried to do research on what to expect and the like, but to no avail, I haven't found anything that really explains what goes on in the surgery and what we can expect when she comes out of surgery, healing time, abilities and what not. We have been through many trials and toils with our daughter, from rare seizure disorder, to her passing away and revival due to 6 month DPT vaccine. This ranks right up there! It's almost a damned if you do, damned if you dont situation. We want her here for a while longer, so you get the rod. You don't want her to go through more pain than she can let us know she is having, and take the risk of her not living longer. We have never felt more helpless. She can't sit up on her own, or roll herself over when she is on her back. She can push up a little when she is laying on her tummy. We are going to have to have a feeding button put in her to keep her nourished and keep pain medicine down her. She aspirates fiercely and can't even drink water. It has to be thicker, and it can't take her breath away, as some pain medicines do. Any answers to questions, or heads up or anything to help us understand what we are about to go through would be appreciated.
Jason and Gwen Durham

carebear23
09-29-2005, 03:45 PM
Wow! I can't imagine how hard this must be for you.. there are parents on here who I am sure can at the least share their experiences with you.

Please keep checking in here! You might also want to try using the search option as there have been some children with special needs who have been through this surgery. Just keep trying different words and I wish you nothing but luck.

I hope you find the answers you need.

dmb
10-06-2005, 04:23 PM
Our daughter is tentatively scheduled for a January surgery to put a rod in her back for her 60 degree curvature. She is a special needs child, 12 yrs old but developmentally a 6 month old, and we have no idea what to expect. I have tried to do research on what to expect and the like, but to no avail, I haven't found anything that really explains what goes on in the surgery and what we can expect when she comes out of surgery, healing time, abilities and what not. We have been through many trials and toils with our daughter, from rare seizure disorder, to her passing away and revival due to 6 month DPT vaccine. This ranks right up there! It's almost a damned if you do, damned if you dont situation. We want her here for a while longer, so you get the rod. You don't want her to go through more pain than she can let us know she is having, and take the risk of her not living longer. We have never felt more helpless. She can't sit up on her own, or roll herself over when she is on her back. She can push up a little when she is laying on her tummy. We are going to have to have a feeding button put in her to keep her nourished and keep pain medicine down her. She aspirates fiercely and can't even drink water. It has to be thicker, and it can't take her breath away, as some pain medicines do. Any answers to questions, or heads up or anything to help us understand what we are about to go through would be appreciated.
Jason and Gwen Durham


Bless your heart!,

I was diagnosed with scoliosis at 12 and by the time i was 14, the docs wanted to do surgery, but we didnt because we didnt know alot about it at the time. I am now in my 30's and when i got in my late 20's the scoliosis started to debilitate my lifestyle. I had to have surgery it was not an option for me. In fact my surgeon said it would only progress from that point only. To answer one of your questions, I was on anti-seizure meds from about 5yrs old to high school age. I've been on and off of it for years. However, my seizures were a BIG BIG concern for me going under. The surgeon told me that i would have to go back on the anti seizure meds and that i would be hooked up to all sorts of monitors. I had no nerve problems or any seizures. I had a really good surgeon. Let me know if i can be of any further help. If so, i can give you my email address. Good luck!

DMB

Shllbug
10-07-2005, 12:19 AM
Listen...Your daughter will be OK, i promise..She has already over come so much Im sure..This is another obstacle..I know its easy for me to say, butmy mom was scared to death too before I had my surgery..I mean it just comes with the territory of being a parent right?..I can't predict what will happen with your daughters surgery, but I can tell you some things I went through because I was also 12 when I had mine...I was diagnosed when I was 10..I was supposed to wear a brace, but my curve was way too advanced..The doctor told me once I hit my growth spurt that my spine would eventually get so bad that I wouldn't live past the age of 18. So I had the surgery..It lasted about 9 hours and because I had a clotting problem, I had to have a blood transfusion during that time..When I came off the elevator Mama said my eyes looked like golf balls from all the drugs I had in me ;) ..I had my own nurse at my beck and call 24 hours a day and she was wonderful..I had about 3 layers of dressing on my back so when it itched I couldnt scratch it!! THat was probably the most annoying thing I had to deal with..I had no real pain that I can recall because I was on morphine the entire time i was in there..I had about 102 stitches in my back (the kind that dissolve inside the body so i never had to get them removed) I also had about 65 stitches in my hip from where they had to take some bone from my hip and fuse it into my spine..I was on a clear food diet almost the entire time I was there,except for like the last day they gave me eggs and bacon for a going away dish :) The week after my surgery I experienced a lot of stiffness because my body was trying to adjust..I couldnt stand or sit for longer than 30 min at a time, but this is just temporary!! I didnt last for long..Now i have perfect posture and I can do anything i want pretty much! Im so thankful that they have a way to fix scoliosis because it saved my life..you can always look at it that way..these people that do the surgeries KNOW what they are doing, I promise..Ask the surgeons how many of these surgeries they have performed..its probably a lot! Good luck to your daughter and God bless her! We are all special in this world and we who have gone through these trying times just learn to appreciate life even more afterwards..The 2% of us that scoliosis affects were chosen for a reason..It may not be clear at the time, but eventually there is an explanation for everything..PLease let me know if you have any questions or comments! I love sharing :)

KRIS ATKINSON
10-07-2005, 08:27 AM
If you haven't already done this, I would post this situation in the children's section of WATCHING AND WAITING. I know of at least 2 families who frequest that site who could possibly share your situation. Good luck, Kris