The pulmonologist who specializes in Pulmonary Hypertension just came by and checked in with us.
Things he said: He went back and talked with the doctor who did the heart cath. The cardiologist was not surprised we have had such a rocky course based on her pressures and her cardiac disease. He said if she hadn’t have had the heart surgery we would be in big trouble right now. So, I am glad that is behind us. He agrees we need the trach. Looks like that will happen next week. He is not confident we will follow the nice three week recovery/parent training/go home course that they have established here. He feels she might take a while to come off the high vent settings. She cannot go home on these settings. Her FIO2 really needs to come down. He did say that he thinks she is doing well enough to NOT have to go on Flolan right now! (WAHOO!) We talked about needing to find the perfect balance of fluid intake and dieresis. We talked about her non-existent immune system. We are going to need to make sure that she gets her immunizations, RSV shots, and flu shots. And the rest of the family will need the flu shot as well. And, his words, we are going to have to be dramatic with the hand washing. (He says while miming someone washing their hands – very cute) :) He, like everyone else, says she needs time and to grow. I asked him about things like probiotics. He laughed. He is foreign (couldn’t place his accent) and he admitted that where he was raised there are natural things that help, but there are some weird things out there. He said to be careful and make sure that we tell them what we give her, so we can make sure they don’t interfere or interact with her meds. Logical.
Her ICU doctor has temporarily stopped her Lasix drip. Her blood pressure is changing – her systolic number and diastolic number are getting closer and closer, but her mean is staying the same and her heart rate is steadily increasing. So? Speak English. Well, from what I got, her heart needs a little bit more fluid to work with. So they are stopping the lasix to allow that. This is obviously important, but it worries me. When he walked off, I turned to the pulmonologist and said, “Well, we’ll see in the morning’s chest x-ray if her lungs are full of fluid or not.” (That shows so little faith, doesn’t it? Experience.) We talked for a few minutes about this pattern she has of filling with fluid, working so hard to drain it, relaxing our efforts, and them filling again. He said to me, “It’s that balance we were talking about.” So true. I’m hoping for good things, but nervous. (I think that is my normal state, though.) Again, the pulmonologist reiterated to me, “Time, she just needs time.”
Why does time have to take so long? :)