Learning more

We have learned an overwhelming amount of medical information and jargon over the last 10 weeks, and today was no different.  In trying to better understand Anna's current condition and its causes, I asked a lot of questions today.  I'm going to share what I learned because, frankly, I find it interesting.  And it's good for me to know as Anna's mom and "general contractor" (as Matt called me recently).

Anna has been hypertensive (high blood pressure) during most of her hospital stay, in part because of life in general for her, but also in part because of the steroids she is taking and will continue to take for most of her chemo treatment.  She has often also had even higher blood pressure when coming out of anesthesia, which does not usually happen for most patients.  No one really knows why this is the case for her, but most of the time her blood pressure comes down on its own within about a half hour.

When Anna's shunt infection presented itself, she was started on some pretty heavy hitter antibiotics.  One of these antibioitics, vancomyecin, when given through an IV can cause kidney troubles.  Last week on Tuesday morning, the vanco levels in Anna's blood were dangerously high.  The necessary precautions and adjustments were made with the vanco.  The next day one of the labs she gets every day showed an elevated amount related to her kidney function.  But the numbers started coming down the next day, and no one was particularly worried.  We now know that Anna experienced an acute kidney injury at this point, which then in turn affects a person's blood pressure.

On Friday night Anna had her EVD replaced.  When she came out of sedation, her blood pressure was high, but this time it remained high for most of the night.  Based on Anna's symptoms, we now believe this is when the PRES really began.  Her symptoms from PRES peaked on Sunday night, in our opinion.

I ran this scenario by a few medical professionals today and, although no one will ever know for certain exactly what happened, they agreed that this was a pretty logical explanation.  In addition, one of the chemo drugs Anna received for 6 weeks is a related drug to one that is know to have a correlation with PRES, given the right circumstances.  (Hopefully that makes sense.)

So ... now we know a possible reason for why it happened.

I also tried my best to get a better understanding of what exactly PRES is and what it looks like in a patient.  Without having a medical degree, I realize that I try to oversimplify some things, but at least it helps me grasp the bigger picture.  I ran the following explanation by the head neurologist this morning and he agreed that it was a decent, if basic, understanding of PRES.

Every person's state of consiousness waxes and wanes.  (If I could use my hands right now, I'd show a wave motion as I describe things.)  Sometimes we are really awake; sometimes we are just awake; sometimes we are drowsy; sometimes we are sleeping lightly; and sometimes we are sleeping deeply.  When a person experiences PRES, their baseline state of consciousness is altered, and then even that waxes and wanes.  (Again, if I could use my hands, my wave motion would be lower.)  Their really awake times might be similar to a normal person's drowsy times; during what would normally be a resting time, a person with PRES would be sleeping; and their deep sleep is really, really deep sleep.  As the body takes care of the added fluid in the brain, their state of consciousness slowly returns to normal.  (My hands would continue the wave motion, but it would be going slowly upwards ... I'm such a teacher at heart :)

Another way that has helped me understand things is trying to remember when I've woken up in the middle of the night and felt disoriented and confused (which has actually happened more than once in the last few months ... Where am I sleeping again?  Which way is the bathroom?  Who just walked into the room? ... but you can't even put these thoughts into words most of the time).  Several times when Anna has been awake since Friday she has seemed very disoriented and confused.  At times she was unable to follow simple commands like squeezing someone's hand or wiggling her toes.  Now we know why.

So ... that is my understanding of PRES in a nutshell.

Here's the sliver lining.  The second letter in PRES stands for reversible.  Her altered state of consciousness and responsiveness is not permanent.

Also, the sleep that Anna is getting right now is natural sleep, not drug-induced sleep.  However weird it may be, her body is getting more restful sleep this week than it has in months.  I asked one of the doctor's about this thought and he agreed with my opinion.  Hopefully, all the sleep will do more good (in terms of helping her body heal from radiation, surgery, and chemo) than harm (in terms of less activity and rehab).

The other positive is that we know the cancer has receded.  Since the MRI results lag a bit from the clinical observations, and since Anna's brain MRI was utterly abnormal (cancer, radiation, shunt infection, EVD placement, PRES ... too many layers), no one can say how much the cancer has receded, but the original tumor is definitely smaller than it has ever been on an MRI.

It all still sucks, but not as bad as it did on Sunday.

Today Anna's awake times were more "awake" than she had been since Saturday, but not as "awake" as she was on Friday.  Clinically, she has been improving since Sunday.  Medically, her numbers are also improving.

The main task for the doctors right now is to figure out what is going to work best to keep her blood pressure within a safe range until her kidneys heal completely from the injury (which they already are), and then how to treat her blood pressure until she is weaned off of her steroids.

Our main job is to keep our heads above water, with God's help (and everyone else's) we are still managing to do just that.

Your job is to keep praying.