pediatric spianl fusion

chris_at_lucas_RN, RN · May 8, 2004

Until and unless you are satisfied that the procedure your child is having is appropriate, and you are comfortable with the explanation you have been given, don't consent to it.

Share this concept with your child's doctors and get whatever printed info (and verbal explanations) you can, then google it all--and come back and share your questions with us, etc.

To me, your question was not specific enough for clinical detail (what development, what procedure?), but it was clear you do not know what they are going to do, or maybe why.

Get that straightened out with the docs--and don't let them push you around! You get to make the final decision--not them.

Good luck, and come back and let us know what's happening, if you like. We're here!

nonnysmom · May 10, 2004

Thank you for your input. I know why they are going to do this procdure. For it is something I sought out when I was told last year that she needed a growing rod now now now. At that time I wasn't convinced that a growing rod was the appropriate surgical procedure for her and I wouldn't go through with it. I ended up being right and we found TRP. With TRP there are a ton of testing that is done to find out information regarding rib malformations, spine malformations, capacity of lungs and an array of other things.

No two "rib kids" are the same. This procedure is used to correct a number of things but the main area it services are kids with Thoracic restrictive disease due to scoliosis.

I have an email into one of the surgeons asking what this new information means in regard to her spine being partially fused and what if anything this means for her TRP and if there are any additional things that will need to be done. I'm sure I will hear back from him sometime this week. They have been great thus far with keeping me informed on everything and sharing their concerns as well for some things we have been dealing with medically at home with her pulmonary issues.

If you would like to read more on the procedure she is having here is the link:

http://www.titaniumribproject.8m.com/

Thanks again for your input. I have acquired many doctors/surgeons opinions and if I don't agree we don't do it. I feel I know my child best. I deal with her issues on a daily basis and I'm her only advocate. If I don't trust in what you are saying to me and fully understand it, it simply won't happen. I'm firing a doctor tomorrow actually because I don't think he is devoting the time and energy it takes to be one of her doctors. You have to care and with children I don't know how you wouldn't. But I have come across many who just don't it's just another "case" to them.