So I know I said I wouldn't update until Friday, but I am truly moved by the actions of a specific doctor. Therefore, I thought he needed to be praised for all of his work. Throughout this whole process of learning about ARPKD I have been on my own doing research and contacting doctors. Sometimes I can ask for a referral from my OBGYN. Other times I call on my own, crying and begging, for someone to please consider our case. Yes, I know how pathetic that may sound, but desperation changes things.
Well, Dr. Nieves, who is the head of Neonatology at TGMC, has gone above and beyond for us. When we met with him on Friday he was amazingly honest with us about what TGMC could do for us. He suggested we choose another facility unless it was an emergency situation. During the meeting he also mentioned that he would e-mail other neonatologist's that he was in contact with at Tulane and Oschner. Now, I have been known to be "naive" and believe a lot of what people say, so I took his word for it and was so sure he would follow through. My husband, however, is always the skeptic, and simply said "No other doctor has done this for us yet, I can't get my hopes up that he will." I guess this is how we balance each other out. Well, low and behold, my phone rings on Tuesday afternoon and it is Dr. Nieves personally calling me. It is not his nurse, assistant, or the women's center coordinator. It is HIM and I am shocked! He told us that he got an e-mail back from Dr. Gordon (neonatologist at Tulane) and informed us about all of the things Tulane could offer us. Well, today, while we were finally taking a break and had no obligations, the phone rang again. I thought twice about answering it, especially since I didn't recognize the number, but with everything going on I'm not taking any chances. To my surprise, Dr. Nieves was on the other end of the phone AGAIN! He heard back from the head of neonatology at Ochsner and after comparing the services of both hospitals, Ochsner has ventilators and dialysis programs that Tulane may not. He stayed on the phone for a little while explaining in detail the vents and types of dialysis that they had so I could better understand. We also learned that there is NO pediatric transplant team in all of Louisiana. So, if by god's grace we get the opportunity to give Parker a transplant, we will have to travel a good ways. Of course, that is the least of our worries! After the phone call ended I still could not get over his generosity.
Over the last few days, Jason and I have discussed what he's done for us several times. The irony of it all is that he is the one doctor that we have not had to pay. The meeting that he held with us was just that, a meeting. He did it to put our minds at ease and we were not charged a dime. Yet, he has made me feel like he is willing to go above and beyond.