Not much new information today. We know she is having frequent small seizures in the right hemisphere, which is the opposite side from the tumor. While this is not unexpected, it is not easy to hear. We can't see signs of the seizures, though the doctors sometimes notice some staring or stiffness that they attribute to them. She is now on high doses of phenobarbitol to reduce the seizures, so hopefully that will make some difference.
The neurologist, who we have learned is the most clinical and least gentle of the doctors we have talked to, mentioned she may have had a stroke. We won't know until the MRI this afternoon. I'm trying not to worry about it yet, but I'm failing.
As Chris mentioned, there is also a large bubble of air in the now-empty space in her head that was once tumor. They showed us the CT scan, and it basically looks like someone used a spoon to scoop out the majority of her brain. Air doesn't seem to be such an unlikely occurrence, and as difficult as it may seem, I am not worried about getting rid of it now since they are going to open her up and let more in next week anyway. It's funny how different my threshold for "serious medical issues" is right now. Air bubble in brain? Meds can stop her breathing? Seizures? Sounds good, whatever has to happen to get to the next step.
I keep trying to remember that what we see right now is pretty meaningless. Nothing is certain, and there is no way to know what the long-term effects may be. Paralysis today may be resolved tomorrow. Swelling is always changing. Nothing we see today means anything for her future.
My biggest concern, and the most difficult, is pain management. How do you know when a 2 month old hurts? She can't say "Ouch!", she can't point to where it hurts. She can't even cry right now. I slept next to her all night, and it was pretty quiet. When I woke at some point, I heard her whining a little. I asked the nurse, and she thought it was just snoring...I didn't believe her, but what do I know? Her heartrate has been high, understandably, so I just watched it closely. A few hours later, the next nurse came in and noticed all kinds of things were wrong - a stick-on heart monitor was yanking, her catheter was pulling and an IV in her foot was leaking. She was hurting, and the new nurse couldn't believe she hadn't been given pain medication yet. It was devastating. Now I am learning what to look for, what I can fix myself and what the nurse can do to help. She should not have to feel pain, and I am going to watch for it as best I can.
For those who have asked, we have a PO Box now.
Chris, Brandi and Scarlett
P.O. Box 1573
Newark, CA 94560