Our daughter Emily had her surgery at Childrens Hospital in Phila. with Dr. Dormans on Jan. 29. She is fused from T-2 to L-1. She spent 4 nights in the Icu and then went to the surgical floor with fluid in her right lung. We left the hospital with the lung still having fluid around it, but the chest x-ray showed clearing and we were discharged after 9 days.. However after 12 days we saw a rapid decline and having a hard time breathing and very pale and low- grade fever. We went down for a visit and was immediately readmitted with a collapsed lung.. Needless to say, we did not expect this complication at all and we were there for an additional 9 days, three of which were spent in the ICU again, having to go thru two operations to place chesttubes into her to drain an amazing amount of fluid from her lungs... We have been home for almost two weeks now and she is regaining her strength. She is still very pale and is not ready to go back to school. She is in 12th grade. One of the things that we did not do is have a visiting nurse when we came home. In hindsight we should have and we have one now for two more visits this time. I hope that any parents going thru this surgery with their children have some sort of follow thru at home. If we had the nurse, she would have picked up Emilys decline way sooner than we had and we would have gone back to the hospital sooner than we had and certainly not in the situation we experienced. I was wondering if any parents had pleura effusion post-op after spinal fusion? Also wondering when her strength will come back as she is still having pain in certain areas in her back and a lot of stiffness in her neck region. In her x-rays her rods seem to go pretty high in the neck region and perhaps this is the reason for her pain.. She also has Down Syndrome and it is hard to really know what she is describing. To all the parents out there, did it take a long time for your children to "come back" to their appetite, to their weight before surgery, paleness go away, and when they really got their stamina back???? Thanks for any advice or thoughts. thanks too to Melissa, Lori and Martha for all their continued support!
Ann
Ann
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