I'm the mother of four children, the youngest a special needs child. I myself was diagnosed with scoliosis in my early teens, but luckily the progression stopped on its own with no bracing or surgery needed. I have one shoulder alot lower than the other and am not even sure of the severity of the curve.
I write today though about my youngest son who with his last x-rays measured at about a 68 degree thoracic curve, not sure of the lower compensation curve. We did the whole bracing thing since he was about four or five with no positive results. He will be nine now September 2'nd and his surgery is scheduled for September 10'th. He's having his MRI done tomorrow. He has a chromosonal abnormality which has made him globally delayed. There is nothing he is age-appropriate with. He is legally blind, has mental retardation, has failure to thrive, leukopenia (chronic low white blood count). He eats no solids (food and oral aversions) so he drinks a bottle during the day and is g-tube fed at night. I'm worried most because he doesn't speak and has no way of telling me how he's going to be feeling after surgery and during his recovery time at home. He didn't walk until he was five and has had corrective ankle surgeries on both feet. He is just now starting to do his version of running. I'm worried this surgery is going to set him back immensely with his motor skills. His balance and depth perception are not very good now as it is and I'm afraid that after his surgery he will not feel comfortable enough with his new body and brace to want to walk.
I know he's not a typical child and recovery time is different for everyone, but how long (estimated) should I expect to see him make an effort to get up out of bed and begin to get back to "normal". How long also is pain expected to last and how severe is it. I want my son's pain to be managed correctly but with him not being able to speak I worry it won't be.
I remember when he was ten months old and he had his open heart surgery, him trying to cry while intubated and they told me they had given him the most pain meds they safely could. He just didn't seem to respond well to the pain meds and wouldn't stay sedated. They tell me with this surgery they will keep him sedated in the ICU for the first couple of days, but I'm dreading reliving seeing him in such discomfort. Are there pain meds that worked well for some of the children that have had similar surgeries. If so, any suggestions would be appreciated.
I also wanted to ask about the expansions every six months, how invasive are they and are they surgeries that he would need to stay in the hospital for??? As you can tell I'm a mess and am rambling. I'm just so stressed and WORRIED..... I wish the surgery was tomorrow, the anticipation and worrying prior to surgery is killing me.............
Thanks for reading and I wish the best for all,
Crystal
I write today though about my youngest son who with his last x-rays measured at about a 68 degree thoracic curve, not sure of the lower compensation curve. We did the whole bracing thing since he was about four or five with no positive results. He will be nine now September 2'nd and his surgery is scheduled for September 10'th. He's having his MRI done tomorrow. He has a chromosonal abnormality which has made him globally delayed. There is nothing he is age-appropriate with. He is legally blind, has mental retardation, has failure to thrive, leukopenia (chronic low white blood count). He eats no solids (food and oral aversions) so he drinks a bottle during the day and is g-tube fed at night. I'm worried most because he doesn't speak and has no way of telling me how he's going to be feeling after surgery and during his recovery time at home. He didn't walk until he was five and has had corrective ankle surgeries on both feet. He is just now starting to do his version of running. I'm worried this surgery is going to set him back immensely with his motor skills. His balance and depth perception are not very good now as it is and I'm afraid that after his surgery he will not feel comfortable enough with his new body and brace to want to walk.
I know he's not a typical child and recovery time is different for everyone, but how long (estimated) should I expect to see him make an effort to get up out of bed and begin to get back to "normal". How long also is pain expected to last and how severe is it. I want my son's pain to be managed correctly but with him not being able to speak I worry it won't be.
I remember when he was ten months old and he had his open heart surgery, him trying to cry while intubated and they told me they had given him the most pain meds they safely could. He just didn't seem to respond well to the pain meds and wouldn't stay sedated. They tell me with this surgery they will keep him sedated in the ICU for the first couple of days, but I'm dreading reliving seeing him in such discomfort. Are there pain meds that worked well for some of the children that have had similar surgeries. If so, any suggestions would be appreciated.
I also wanted to ask about the expansions every six months, how invasive are they and are they surgeries that he would need to stay in the hospital for??? As you can tell I'm a mess and am rambling. I'm just so stressed and WORRIED..... I wish the surgery was tomorrow, the anticipation and worrying prior to surgery is killing me.............
Thanks for reading and I wish the best for all,
Crystal
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