November 8th: holding pattern

I have no desire to write on this blog tonight. 

In case some people can't see my facebook posts, I'll backtrack here. We got a call this morning that Ava had two seizures. She was sent downstairs for a CT scan of the head and two brain bleeds were detected on the cerebellum and on top of her head. Because she is given drugs to keep her blood from clotting it is impossible to know how the bleeds will behave. Blood is very irritating to the brain and caused the seizures. She was put on an anti-seizure medication, and connected to an EEG machine to constantly monitor her brain waves for seizures all day.   This sequence of events prompted the urgency to get off ECMO. As soon as she is off they can stop thinning her blood so that it can clot off. In order to get off ECMO, her lungs need to be able to work. In order for her lungs to work she needs more fluid drawn off her body. In order to draw fluid off she was given medications to help keep her blood pressure higher. And I don't know why she swallowed the fly...

So by the time I had left they had drawn off 150mL of fluid. The goal was 1000. Hopefully the night shift can get off at least 500mL. Her blood vessels are now less "leaky." As the machine filters water from her blood it returns the "dry" blood back to her body to pull more fluid from the tissues, like osmosis. We want this fluid to be pulled off the lungs. Inflating wet lungs is like pulling apart two wet plates in the sink.  She was given surfactant today into each side of the lungs to help them be less sticky. She was put on an oscillator, rather than a conventional ventilator because it gives many many small breathes rather than large hard ones that could further damage the lungs. The breathes are to try and open up the lungs. At this point they are not for oxygenation, though that is the hope for tomorrow. I was hoping for today, but that was a tall order. The chest x-ray showed that about 1/3 of the right lung had opened up, so that was a step in the right direction. She will have another cheat x-ray at midnight. Ava was given paralyzing drugs in Addition to the sedation drugs so that she couldn't fight the ventilator. So before she could move her hands and feet and eyes a little, but now she can't. Being paralyzed and being sedated are different, though, so I believe she can still hear people. Shaun and I are going to record ourselves reading books for her to listen to. Music therapy was awesome in setting this up for us. 

When she is taken off ECMO (hopefully tomorrow) one of her ECMO Cannula sites will be replaced with kidney dialysis catheters, and she will be on continuous kidney dialysis until her kidneys decide to start working again. She will have another head ultrasound tomorrow, which isn't as diagnostic as a CT scan, but it can be done at the bedside, whereas a CT scan involves a major transport. 

So the brain bleeds were bad news for today, but most everything else is in the right direction, praise God. 

I maxed out today for the first time. I always envisioned that would involve screaming or crying fits but it was more collapsing. I was frustrated and overwhelmed with the shift change. The night nurses, who were perfectly nice, were people I had never met. The day shift ECMO nurse had settings much higher for pulling off fluid and the night shift insisted that it wasn't possible. This was my tipping point. I sat in the uncomfortable chair and shoved a pillow in some awkward position and passed out for about 40 minutes. When I woke up I was staring at the clock thinking it was an hour and a half into the shift and the night attending/fellow/ or resident hadn't come to check on Ava or introduce themselves to me. This was frustrating because Ava is such a high priority on day shift and I see someone within 5 minutes of getting there. I couldn't move. I felt like sandbags were stacked on top of me. I asked the charge nurse about who the docs were and she found one and sent one in to appease me, basically. It worked. I was able to walk out of there. 

Hope in the absence of prayer is futile. If you find yourself depending on hope, that will bring you to your knees. 

I am drained, absolutely drained. Goodnight. Pray for good news tomorrow and for coming off ECMO and starting kidney dialysis.