I have decided that the best way to describe our NICU experience, so far, is to compare it to a roller coaster ride. Now, I'm certain that it is not this way for everyone, but for us and our condition, this is the perfect analogy. You see, the climb up the hill is when doctor's prepare you for things. For example, "We have decided to do surgery on Friday to remove one or both of your son's kidneys, but we wanted to prepare you." When you reach the top of the hill, you have accepted things and are ready to face them head on. We realized that even though surgery scared the daylights out of us, it would relieve him of the discomfort, get him stable, and get him home. Then, the descent downhill is when they completely change things up on you and throw a curve ball into the mix. For instance, "We have decided not to do surgery on Friday. Instead we will transport him to Children's Hospital on Monday and his team of nephrologists there will make a decision."
Ultimately, this is for the best and we completely understand, but it is still so emotionally draining to continuously prepare yourself for things. Children's Hospital is where Parker's long-term team of doctor's will be. Ochsner was just a starting point for us and we knew this all along. Ochsner only has one nephrologist and in his words "That's not fair to Parker." He cannot be there at all times, which is what happened last week and we need continuous care. Now that Parker is stable and off of the vent, we were given the option of several very good doctor's in the area to choose from. Ultimately, we decide to stay with Dr. Aviles. He was the doctor at Children's that I met while I was pregnant and could have kissed for all of his positivity. I have complete faith in him and his team. So, since his team of doctor's will manage Parker's case long-term, it makes complete sense for them to be the one's to decide if and when Parker has surgery and the specifics. So first thing next week Parker will be transported to his new home away from home. The doctor's will let him get settled in and then evaluate his condition before making a definitive decision. I am overall happy with this. Surgery is irreversible after all.