About 75% of Haven's life has been in doctors offices and hospitals. Over the years we've been through a lot of doctors - some bad, some good, and some that are truly lifesavers. I get upset with doctors and when we first came to MD I was every doctors enemy. I didn't trust any of them even if I had just met them.
CA was horrible. We spent 2 years wasted on doctors and hospitals. Constant blaming of us for our daughter's issues and constant dismissal of symptoms. This made me hold a grudge against ALL doctors.
Moving to MD was probably the best decision I made to save my baby. We've lived at Hopkins for over 2 years now and we've made it through some rough patches with doctors and diagnosis. I've had many arguments and disagreements with our doctors in the beginning and it was hard to take what they were telling me.
But now I can't tell you how much I respect our doctors and how much gratitude I have for them. I can honestly say without these doctors I probably wouldn't have my baby with me. I probably would've lost her and never knew why.
There are major players in Haven's life who have kept her alive and fighting and have helped me along the way.
Dr. Cooke - Endo - he has been there from day 1 when Haven was rushed to Hopkins from Upper Chesapeake. He didn't give up and tested her for everything. He listened to what we had dealt with prior in CA and he broke it all down. He found her Ganglioneuroblastoma Tumor and ultimately diagnosed her ROHHAD by putting all the pieces together.
Dr. Paz-Priel - Oncology - he's been with us since December 2007 when we were first informed that Haven had cancer and a large tumor in her abdomen. He has been the best doctor I could ever hope for. He is always there when I need someone to listen to some wacked out theory I have or to listen to all the notes I take on Haven. He watches the videos I send him. If it weren't for his aggressive attack on her cancer and ROHHAD I wouldn't be here showing the world my baby and her improvements. He has never given up on Haven and has fought through many doubts on her treatments. Seriously I could never thank him enough.
Dr. Price - Surgeon - well....without him and his knowledge of these tumors and surgical skills I could've lost my baby in February 2008 when she underwent a 14 hour surgery. He has been there when I need him and for anything I have questions about. He is the only surgeon I would ever let dig deep in to my baby. He watches for Haven and when we see him at the hospital he always stops to say hi to her. Amazing!
Dr. Cooper - Pediatrician - she has been there for more than just Haven. She has been there to help us out as parents. She has collected articles written by other doctors for me that I can't get because I'm not a medical professional. She has helped us get Haven the appointments that are difficult with specialists. She's even helped me get in to doctors!
There are people that will never see Haven again that I'm thankful for their honesty - Upper Chesapeake. They stabilized Haven during her seizure and did a CT scan...ultimately came out and were honest and said "We can't help you - we're calling Hopkins". I am so happy they didn't just try to guess and openly admitted they didn't know.
It took me a long time to trust in a doctor with my baby and now I can't imagine not having them in her life and watching over her. I am very happy they put up with my cockamamie theories and my many emails.....most at that level wouldn't even pay attention. And believe me, I email them a lot!