Threes

Shunts.  I have a love/hate relationship with them and no doubt, so does Marissa.  Most importantly, they keep my precious girl alive!  They are necessary - all three of them! 

That said, three hemorrhages + three shunts + over 30 surgeries = triple trouble.  Thursday, Marissa had a "routine" follow-up with Neurosurgery.  Rarely is there ever anything routine about any of her follow ups with any specialty.  I went into the appointment figuring there'd be discussion about next steps, other options, and possibly...gasp...an admission to the hospital.  The doc decided to tap her shunt - a procedure that involves inserting a needle attached to tubing into one of  her shunt valves.  Marissa has had more shunt taps than I care to count and basically, they suck, but they are extremely informative.  Immediately, I knew we were dealing with an obstruction.  We calmed her down with a few resounding choruses of Twinkle, Twinkle, Little Star and the fluid continued to literally shoot out the top of the tubing.  Basically, they can get a fairly accurate determination of intraventricular pressure based on how far the CSF travels up the tubing.  Because hers was coming out the top, this indicates the pressures are so high they cannot be estimated.  The NP pulled off 30cc's of fluid and sweet Marissa fell asleep during the remainder of the procedure.  Because there was good flow to the valve, it was deemed there was most likely an obstruction in the distal catheter (aka our "new" gall bladder placement).  NOT what I wanted to hear, but so much better than a failing cranial shunt catheter.

Friday, Marissa had a fluoroscopy done on her entire shunt system.  Present were two radiologists, our neurosurgeon, a neurosurgery resident and the general surgeon who placed the gall bladder catheter.  The fluoroscopy was a bit inconclusive.  It appears that the system was patent and fluid was flowing, however, it was flowing slowly and it was definitely "hanging up" in the gall bladder for an extended period of time.  Because Marissa overproduces CSF, this could be causing her high pressures.  Overall, it's funcitoning, but not as solidly as we hoped it would.  We decided to give her the weekend and reassess on Monday.

Monday morning brought yet another shunt tap, only this time we hooked her up to a manometer to get a true intracranial pressure reading.  It is highly likely that her pressures greatly vary throughout the day, but as long as she came in under 25, she would be given the great Neurosurgery blessing to go home and wait and see.  She measured 20!  No hospital, no surgery, no new meds.

The downside to all of this is that we are no closer to an answer for Marissa's mood.  She continues to vacillate between extremely happy (bordering on manic) to violent and it changes like a switch is flipped.   She is getting bigger and my fear is that she may actually significantly injure herself.  She is becoming much more difficult to manage at times and it is nearly impossible at times to take her anywhere.  I find myself sad for her and frustrated much of the time.  I know this is just another hurdle we must overcome.  I know my frustration is minuscule compared to what Marissa must feel on a daily basis.  I know I have no right to complain.  I just hope we can find some help for her.