I'm sure that you are now realizing the emotional roller coaster that we have been on. Good days followed by bad days.
Today the echo test was not favorable. When they tested her with the nitric oxide, she didn't respond any better and this time her blood pressure did drop and she really struggled through the 5 minutes. We are still hoping for a miracle, but they want a decision on the transplant today so that if we choose to move forward, we would list her today.
We had a couple other scary moments tonight. They had to change out her ECMO today because it is getting clots. She also has started to develop some discoloration in her right fingers... I think they refer to it as dusky. I would say they look awful. They are purple and look like they have not had any blood flow - again a side effect of ECMO.
The change went well but the machine itself was having issues. They had to add a lot of volume to stabilize the machine and Mallory. There was a point where the tech was standing holding the cannulas to keep them stable in her neck. It was very scary but everything eventually stabilized.
Later that evening, the nurse noticed some water on the floor. No sooner than her pointing it out to the tech on the ECMO machine, he was running to the other side, alarms were going off and he was physically cranking the machine to keep it running. I was terrified but Mallory was okay. He blood pressure stayed stable. Her heart rate did increase a bit, but I am sure that was because within minutes there were 15 people in her room.
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