Awake Beauty

There are certain moments where I just feel so heavy like I can't continue on.  Walking by a room in the PICU, I saw a mother holding a baby younger than Lotta, gently stroking her baby's head.  She was fully suited up with a mask on.  It made me want to weep.  But then I feel like if I start weeping, I will be unable to stop.  I might just melt into a pool of butter on the floor.  Other times I can turn it off and not feel so emotionally at the edge.  Then I think of the times when Ellie feels like she cannot get out of bed, and I remind her that if she says that she might believe it.  And I remind myself that I absolutely can do this and I will do this and one day I will look back on this time and be amazed at what we were all able to pull together and do.  Right now, in the middle of all this, it feels very messy and dramatic.

This morning as I walked up to Ellie's room, the fellow was finishing up.  He said that his conclusion was that the symptoms we are seeing now is merely "disease progression."  We have explored every avenue and have done everything we can do for her right now.  He recommended that we move to hematology/oncology service. 

Our neurologist however, is convinced that Ellie is still in recovery mode from 4 major brain surgeries and chemotherapy.  He thinks that the change in cognitive function may be due to lesions in the frontal lobe (the part of the brain responsible for rational thinking) from her previous surgeries.  He also thinks some of the fluctuations in her heart rate may be due to the second incision site (at the back of the head, near the brain stem),lesions to that area of the brain. 

Ellie is back to being awake for days on end, which seems appropriate after being asleep for days on end.  She had a hard time coming out of the anesthesia yesterday after her MRI and was doing some heavy duty hallucinating afterwards.  This morning she has not been talking much, just mostly staring, as that is about all she can do with this level of exhaustion.  Her heart rate is again fluctuating between the 40s and 50s and occasionally dropping into the 30s (that is when I get nervous).  Her heart monitor is on silent mode because the alarm is pretty much constantly beeping.