We are home now after our first procedure with Dr. Paley. We went to West Palm Beach Dec. 6 and returned Christmas Eve. Our daughter, now 16 is doing GREAT after this procedure. She required an extra week of rehab stay and we had many frustrations with the communication between Dr. Paley's office and the hospital, but as far as surgery outcomes we are pleased.
If you have an older child that is beginning their journey to correct PFFD/CFD and have specific questions you can email me as well as if you have not been to the new facility at St. Mary's Children's Hospital:
jerdebwalker at hotmail dot com (Insert symbols and remove spaces).
Debbie Walker
Comments
23 going in
Hi Debbie,
What kind of procedure did she have done? I am having my first procedure which will be the super-hip and knee surgery on January 12th. I'm really excited and I'm glad to hear that she is doing so well. They told me that I would need to stay there for 2 weeks. Why is it that she had to stay one extra week? I'm not prepared to stay that long...I have had trouble getting info I need from the hospital as well. Dr. Paley is amazing and I can't wait to get started. I just wish that I felt more prepared. Hearing things like this kind of concern me. Any feedback you can give me would be great. Thanks!
-Julie
Follow up to some questions sent to me
Thank you to those who have contacted me personally regarding my posts. I realize that my reply on someone else's post was filled with frustration and not really helpful to those trying to find answers on their journey, so I have tried to edit it to be fair to everyone.
To clarify something that got lost in my post, we are not disappointed with the outcome of our surgery with Dr. Paley and we recognize he is the only one who could perform the procedure necessary for our daughter! Dr. Paley gives personal attention to each client and truly cares for his patients.
I do wish we had done things differently, including the timing of her surgery so close to her coming home. I did not have all my questions answered and I did not have the systems needed in place for me to feel comfortable to care for her after the surgery. In the end I should have listened to my gut and postponed the surgery.
I realize we are a unique situation having PFFD and phocomelia (missing upper limbs) as well as a daughter who does not speak very good English. Her needed surgery was a shock to us after adoption March 2009 and we did not have time to put together the financial resources necessary for all contingency plans should have something gone wrong. This is a very long and difficult process and any family doing this must have all their questions answered, feel confident they have the support needed emotionally, financially, and structurally to care for their child.