Shunt Revision Surgery

This week the CSF built up in Meara's head and wasn't draining like it should.  Finally, after she threw up Thursday we called Childrens and took her in on Friday for a MRI and consult.  The MRI showed that her ventricle was enlarged, meaning that the shunt has stopped working.  Her neurosurgeon is back in town on Monday, so we have a shunt revision surgery scheduled for 8:00am Monday morning with an overnight hospital stay to monitor the head wound and to get the required three doses of IV antibiotics.  Hopefully they will only have to open her up near the actual valve but they will test the entire shunt that runs through her body to figure out where the malfunction is.  The surgeon will be able to identify the problem area once he is in.

Meara has had this revision before, two weeks after the original shunt surgery.  She knows what is happening and the only thing she dislikes about it is the IV.  Otherwise she is in great spirits and doing just fine.  If the fluid continues to build over the weekend and she throws up again then we head down to the hospital right away and the on call surgeon will perform the surgery.

I want to extend a special request for a family that we are blessed to know by being on this journey. Ashlyn is nineteen and will be having grids placed on Monday by the same surgeon that Meara has.  She and her parents will be gathering information from the grids and making a decision about possible resection in order to gain control of Ashlyn's seizures.  Please pray and send love to this wonderful family.  The surgeon will be operating on Meara first, and then operating on Ashlyn next.  This family is incredibly brave and we surround them with love and strength.

Hug your kids today, hug your spouse, hug a neighbor.  You never know what kind of stuff life will throw at you at any given moment.  So live in the moment and be grateful for what you receive.  We love all of you and wish you peace.

Love,

Aaron & Megan

Update following EEG and Neurology Visit

Meara had a EEG stay at the end of June.  Were were there for three days and during the stay she had one seizure.  The rest of the movement in her sleep they identified as arousals.  So, that is good news.  She might not be having as many as we think based on this snapshot.  

So, the current seizures are coming from her motor strip, or right behind it.  This means that a "third player" showed up.  The first surgery took care of the first player, the second surgery took care of the second player by isolating the activity in the frontal lobe.  The latest EEG did show some spikes/seizure activity in the frontal lobe that they disconnected in the second surgery.  Basically with the second surgery it has prevented the second team from affecting the rest of the brain.  Think of it as putting the "bad guys" on an island by themselves.  

In terms of a surgery perspective the next course of action would be to do a hemispherectomy and she would lose all motor function on her left side regaining some of it with intense physical therapy.  We've already decided a firm no to that route.  What it means though is that her current seizures could be affecting her motor control anyway.  Now, Megan and I haven't seen any noticeable loss yet.  Given the fact that she's had seizures since was two weeks old perhaps it is not out of the realm of possibility that her brain has moved her motor function somewhere else in order to avoid interruption or damage from the seizures.  Well, at least that is my own positive lean.  The other positive lean is that at least they are not affecting the cognitive part of her brain.  The meds affect her cognitive development but at least the seizures aren't. 

We had an appointment with Meara's neurologist this afternoon at Childrens and we informed her that we are pursuing the Charlotte's Web strain of CBD.  To our awesome surprise the neurologist shared with us that the hospital is in the process of securing a clinical study of a synthetic version of CBD.  She'll present to her boss next week.  They will have to choose between two different competing manufacturers of the drug and then hopefully begin trial within a few months.  We told her that we would like to be considered for the trial if Meara qualified.  This could be huge if it works.  If it does work it means that since it is a synthetic version and FDA study approved that we could travel with the drug and it would be included in our insurance formulary later down the road.  In other words, it would be legal across state lines and also managed by the doctors that we've been seeing for the last six years.  We are still on the waiting list with Realm of Caring but since we are at the mercy of how many crops they can grow/harvest it might take a very long time until they can take Meara on as a patient.  And it is important for Megan and I to keep in mind…that it might not provide control for the seizures.  But at least it is another route to pursue with a heck of a lot less risk and definitive deficit loss than another surgery.

Meanwhile, Meara is doing well.  She is highly active and looking forward to first grade next year.  She loves her sisters and continues to beat the odds.  Resilience baby.  Resilience.  

Love to all,

Aaron & Megan