Hello Everyone,
This is my first post after scouring this forum and it’s abundance of information. I appreciate all of the contributions everyone has made and would like to ask a few questions.
First of all a little background: my daughter, Kim, was diagnosed in May 2006 at age 14 with a 43 degree right thoracic curve. It has progressed to 54 degrees and she is now a surgical candidate. In addition to her scoliosis, she is autistic and mentally retarded with a cognitive of age of 3-5 years of age with extremely limited receptive/expressive communication. However, as you can tell by my signature line she is still a great child but truth be told, yep, I’m pretty worn out most of time!
I would be most appreciative if I could get some feedback on the following:
- Is there anyone out there who has a situation similar to mine? That is, a child who will not comprehend why (post-op) he/she is in so much pain and how did you help your child? Did you have assistance post-op at home, such as a visiting nurse?
- No doctor has recommended a MRI but I am pushing for one due to her multiple diagnoses. They all seem to think this is a fairly straight forward scoliosis curve and a MRI is not necessarily warranted since it will have to be done under sedation. However, two of the doctors I saw said they would order one if I feel it should be done (and I do) to ensure that there are absolutely no other underlying problems.
- Any supplies I should be looking into for use during the post-op period, such as a bed rail, toilet seat riser, walker, shower chair (or any other items)? Is this something I should get ahead of time or would this be provided to us before we leave the hospital?
- One of the doctors recommended she wear a brace 3-6 months post-op since she can be impulsive at times due to her autism and we definitely don’t won’t her to be jerking her back around while the fusion is taking place. Does anyone have a child that had to wear a brace post-op?
- Speaking of fusion, one doctor suggested doing a thoracoplasty and using rib bone for the bone grafting. The other doctor would use the spineous processes removed during the surgery in addition to donor bone and leave the ribs alone (he believes a thoracoplasty is not worth the additional discomfort/surgical risk and donor bone works just as well). Any thoughts on the donor bone combined with patient bone vs. patient bone only success rate during the fusion process?
- How often is a blood transfusion needed and has anyone used the blood bank instead of the patient’s own blood? I’m trying to determine what pre-op procedures Kim has to be put through and those where an acceptable substitute is available. Of course, her blood type is O- while her brother and I are A+ so our blood won’t do her any good (Kim’s father is deceased).
Sorry for the lengthy post but I thank you for listening and providing feedback. I greatly appreciate it!
This is my first post after scouring this forum and it’s abundance of information. I appreciate all of the contributions everyone has made and would like to ask a few questions.
First of all a little background: my daughter, Kim, was diagnosed in May 2006 at age 14 with a 43 degree right thoracic curve. It has progressed to 54 degrees and she is now a surgical candidate. In addition to her scoliosis, she is autistic and mentally retarded with a cognitive of age of 3-5 years of age with extremely limited receptive/expressive communication. However, as you can tell by my signature line she is still a great child but truth be told, yep, I’m pretty worn out most of time!
I would be most appreciative if I could get some feedback on the following:
- Is there anyone out there who has a situation similar to mine? That is, a child who will not comprehend why (post-op) he/she is in so much pain and how did you help your child? Did you have assistance post-op at home, such as a visiting nurse?
- No doctor has recommended a MRI but I am pushing for one due to her multiple diagnoses. They all seem to think this is a fairly straight forward scoliosis curve and a MRI is not necessarily warranted since it will have to be done under sedation. However, two of the doctors I saw said they would order one if I feel it should be done (and I do) to ensure that there are absolutely no other underlying problems.
- Any supplies I should be looking into for use during the post-op period, such as a bed rail, toilet seat riser, walker, shower chair (or any other items)? Is this something I should get ahead of time or would this be provided to us before we leave the hospital?
- One of the doctors recommended she wear a brace 3-6 months post-op since she can be impulsive at times due to her autism and we definitely don’t won’t her to be jerking her back around while the fusion is taking place. Does anyone have a child that had to wear a brace post-op?
- Speaking of fusion, one doctor suggested doing a thoracoplasty and using rib bone for the bone grafting. The other doctor would use the spineous processes removed during the surgery in addition to donor bone and leave the ribs alone (he believes a thoracoplasty is not worth the additional discomfort/surgical risk and donor bone works just as well). Any thoughts on the donor bone combined with patient bone vs. patient bone only success rate during the fusion process?
- How often is a blood transfusion needed and has anyone used the blood bank instead of the patient’s own blood? I’m trying to determine what pre-op procedures Kim has to be put through and those where an acceptable substitute is available. Of course, her blood type is O- while her brother and I are A+ so our blood won’t do her any good (Kim’s father is deceased).
Sorry for the lengthy post but I thank you for listening and providing feedback. I greatly appreciate it!
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