Update on Miss Mary Clare

After listening to neurologists for three days at MUSC, I think Mel and I agree that neither one of us will ever be close to understanding neurology, neurologists or the human brain, especially Mary Clare’s. (Not sure if it has anything to do with genetics or not…wink.) She had an MRI and an EEG while we were at MUSC and her team of docs discussed her little brain and heart at length.  We don’t have many answers and know little more than when she was admitted on Wednesday.  She has all of her neurologists  and cardiologists stumped.  Apparently, she’s a fascinating little one, but we knew that already!

For the most part (from our understanding, anyway) cardiology can be black and white.  Extremely complex, but black and white. “This is what’s wrong.  These are your options.  This is what can go wrong.  This is why.”  Neurology is gray.  An utterly confusing, vast, gray field. “We may or may not know what’s wrong.  Meds may or may not aid.  This may or may not happen. We may or may not know why.”

Mel had a tough time with this.  I guess daddies just want to fix everything, or know how to, at least. I think he just couldn’t wrap his head around all of the unknowns.  When we first learned of Mary Clare’s HLHS, he studied the surgeries.  He knew the terminology.  He knew exactly what they were doing, what her chances were, the percentages and everything involved.  With the new issue of seizures, there is nothing to grasp, nothing to understand.

I still don’t completely understand how her little heart works, so this is just one more layer of my sweet MC that is a complete mystery to me.  I do know that she is happy and she is mine for now.  She loves life and I love that little life of hers!

A few other things I do know:

-Mary Clare has had three seizures/seizure activity in the past month.   We noticed that she had “ticks” during a fever when she had the flu after Christmas.  Her second “Grand Mal” seizure two weeks ago was after a fever from an ear infection and her third, another “Grand Mal” seizure happened at school with no symptoms.  We thought the first two seizures were simply Febrile seizures.  (Febrile seizures are seizures caused from a rapid increase in body temperature, i.e. fever, and are fairly common in children.  In fact, I had them as a child and outgrew them as most children do.)  We now know that they were not Febrile seizures, as we had hoped.

-The MRI ruled out the biggest threat of clotting.  Clotting can be an issue in kids “close to Fontan age.”  Which is also why the cardiology team wanted Mary Clare down there STAT, hence the chopper ride.  Her seizures have nothing to do with her special heart.  Now we know she has a special heart and a special brain.

-They can see from the MRI that she has a brain lesion, which is an area of injury/damage to her little brain.  This most likely happened during one of her heart surgeries, possibly from being on heart/lung bypass and/or ventilator.  We’ll never know how it got there, just that it’s there, specifically in the right frontal lobe.  It seems to be an “old” lesion. Again, this may or may not have anything to do with her seizures.

-The neurologist mentioned the word “Epilepsy” and told us not to freak out with the word.  He said it is the most misconstrued diagnosis.  He explained how every brain is so unique and there are so, so many types of seizures/epilepsy.  So we forgot that word.

-The neurologists introduced us to several types of anti-seizure meds and explained the benefits/risks/side effects/etc. in using each.  Apparently, it’s trial and error to find what works best for each person.  After much consideration and discussion with cardiology, neurology, cardiology, then neurology and cardiology once again, Mel and I feel that it is in Mary Clare’s best interest to wait on the daily meds.  Our cardiology team is completely behind us in this decision and the neurology staff agreed that it would not harm Mary Clare to hold off on the meds.  They urged us strongly to start meds if/when she has another seizure.  (We do have a prescription for emergencies -in the event of a prolonged seizure.)

-It is almost definite that she will have another seizure, we just have no clue when it will be.

-We will have a neurology appointment before her surgery in March.  Surgery date of March 9th has not changed.

Mel and I have complete faith in MUSC, her medical team, and most importantly God.  We both feel that once we get through her Fontan in March, and we’ve done all we can to get her little heart in a proper working order, we’ll revisit the anti-seizure medications and tackle that little brain of hers next!

This is a tiny corner of mural on the 7th floor of MUSC Children’s Hospital-Emerson and Mary Clare’s own little part of MUSC.  Before we leave after Mary Clare’s Fontan, we’ll gladly leave another set of hand prints!

Wireless cardiac telemotry, aka Mary Clare’s Jet Pack!  Now if they can only figure out how to stick the leads without sticky pads!  Ouch!

Rainbow hair from her EEG!

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