We woke up this morning and started heading to Evie's room about 5 minutes after seven. When we arrived Evie's heart rate and blood pressure were low and dropping. Within 60 seconds doctors and nurses were rushing to her bedside as they feared she was crashing. We were in shock. As they worked to stabilize her, Nicole and I were moved to the waiting room. Within a few minutes the surgeon joined us to say that though they are working hard to stabalize Evie, there are a few possible things going on with her and they are not good. He said that Evie either was having a brain bleed or an infection. If it was a brain bleed, then Evie is finished. If it was an infection, Evie was in extreme trouble and would be very unlikely to survive. He left us to go back into her room as they were doing an ultrasound of her head to determine if she did have a brain bleed. About 6 minutes later he returned to say that it was not a brain bleed--and it might not be an infection either. Allegedly what happened is that a circuit on her ECMO machine had malfunctioned, the machine was not filtering CO2 out of her blood. Her heart was reacting to that. When the machine was fixed her vitals started to stabilize. She is currently stable. It was one tiny little tube that came partly disconnected for an unknown period of time.
Nicole and I don't know what to feel right now. Sure we are glad that it was not a brain bleed, but the idea that such a simple and stupid malfunction could have cost her life is infuriating! Additionally, we don't know how much this has set her back. Her ECMO flow that had successfully remained in the low 300s most of the night is now back to full blast. It is undetermined how this will effect our efforts to wean her off the machine. Additionally frightening (if not more) is that we don't know how long her blood was not being effectively oxygenated and there are large looming questions about how low 02 levels might have damaged her brain. We just don't know and we won't know unless/until Evie gets off the machine, wakes up, and can have a complete neurological exam.
This morning's events only reaffirmed the truth that as long as she is on ECMO she is at incredible risk. Through this out of control roller-coaster ride Nicole and I have struggled to understand where God is in all this and what prayer/faith/and hope are for us right now. I know many people want to pray for very specific things, here is what I'd suggest: that her brain is protected from any potential brain bleeds, that her brain function is protected from the lack of 02 she experienced this morning, that she'd be protected from infection, and that she has not been set back so that we can't continue to wean her off the machine.