Roller Coaster.... Going Down Again

Daddy Log Friday– March 28
I stayed with him again that night but was a little less on edge. I slept a bit more with my only major concern being infection (but he was showing no signs). The next day started off pretty good. During rounds Dr. Blayney was encouraging again and actually seemed more concerned about us than Jonah. The surgeons were happy with the performance of the drain and with the latest x-rays. The super-nurse Jeannie, showed us how his lungs were doing on the x-ray board. Things took a subtle turn around midday. They had tried to reduce the ventilation rate to 40 but his gases dropped so they put it back to 45 bpm. Then the RT noticed that Jonah’s lungs sounded tight so they gave him a puffer. They also replaced his tube which had developed a squeak. This resulted in another plug later on that the nurse said may have been due to irritation during the insertion of the new intubation tube. It wasn’t a big deal– they just suctioned it out when his saturation started dropping, but it was lucky the RT was right there and the nurse wasn’t off doing something else.

Also, his blood pressure had been getting a tad low so they started him on dopamine again (he had been on it at the General also). Another worry was that he hadn’t peed since noon and it was getting late. These things didn’t start to concern us until that night. We decided to stay because although the nurse (Fran) was nice, the resident doctor left us with completely no confidence.

Around midnight we started to get really worried. They kept giving him more fluids to try to get him to pee. The also gave him a blood product (Albumen) to help with his blood pressure because the dopamine did not seem to be working as well as it did before. Fran put in a catheter (yikes) and got some urine out be not much. Jonah’s blood pressure started to stabilize (still a bit low but stable) but the big concern was "where are all the fluids going if they aren’t getting through the kidneys?" It turns out that he was just retaining it causing two things: 1) he looked very bloated and 2) it reopened his heart murmur. On Saturday morning we hardly recognized Jonah because he was so bloated. He did start peeing a lot more which was nice but the neonatologist was worried about his murmur. The echo determined that the duct that had closed prior to the flood of fluids that the resident gave him was now "enormous". The neonatologist took the time to explain what a patent ductus arteriosis (PDA) was and why we should started thinking about surgery. This was hard to hear since every other doctor who had heard the murmur said it would close on its own and that it wasn’t very big. The fact that the resident had caused it to open so large that it needed surgery was lost on her as she tired her best to justify his actions. Janice, the veteran nurse, also recited the party line that Jonah’s condition was a "catch-22" but later came in and told us (her eyes got teary) that if we felt that a resident’s decision was incorrect that we were entitled to ask for a consult from his/her superior. To me this reaffirmed that we were right to question the resident and that even if neonatologist wouldn’t say so, what he did wasn’t the best.

That night Jonah was pretty stable and we decided that we had to get out of the hospital so we went home to sleep. We called Fran a could times for updates. He had a good night and peed almost 50 mL.