Dr. Kaiser the Retina Surgeon came on Friday to look at both of the boys eyes. Brody was right where he wants him a week after surgery. To our surprise one of Cameron's eyes actually was as well. The other eye had not progressed but had not regressed as much as he would have liked. There was a specific area that he could see was susceptible to pulling at the retina if his ROP were to move in the wrong direction...we were not willing to take that risk. Per our request for Avastin, a drug not FDA approved for this application and considered experimental on babies, he came armed with it in his back pocket. Origionally a chemotherapy drug, Avastin has been used for years on eyes but on grown adults for diabetic retinopathy a d macular degeneration. Only since 2007 has it made its way into NICUs. With the long term and potential systemic reactions unknown we had to align a waiver releasing liability but after doing our homework we believe that the Avastin could save Cameron's vision. We struggled for a while deciding what was best for him but we are confident and feel good to know that we have done everthing in our power to give him all of the chances at vision we could. I would have taken him anywhere and paid anything for the kind of hope that fortunately for us Dr Kaiser and our miracle drug were able to give us. His first follow up will be Wednesday.
Tuesday is our next hurdle. Brody will be going into the OR with the ENT surgeon to see what is going on in his throat. They will scope him and if it is something that can be treated right there they will do what they have to then. Still very nervous but learning how to do my research, be prepared and Knowledgeable but also let the boys call the shots and let things happen before I start worrying about every possible scenario. One day at a time!!!
No comments:
Post a Comment