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A Heady Case

After three plus years of being a parent to Leo, I've come to the conclusion that not only do I hold the title of "mom," to him, I also hold the titles of: doctor, nurse, therapist, counselor, and most recently detective. This winter, like everyone, Justin and I got swept up into the Sherlock craze. The BBC show took everyone by storm with its incredible eye candy scenes and shots, the awesome acting, and the addicting plot. But the star of the show was, of course, Sherlock himself, who though selfish and incredibly arrogant, was nevertheless, blessed with a super power of observation and puzzle solving.
In one look, he could determine not only the present situation, but often the past and the future.

This winter, also as you remember, we spent a good chunk of sitting in the hospital; worried out of our minds with concern of the very sick Leo. Like most medically complicated children, he is a challenging puzzle with many parts and pieces that change, often without any warning or prediction.

And like most of the characters in Sherlock, he "ain't telling."

Every morning, while hauling the seven year old Nika out of bed and getting her off to school, I am also running a list of observation in my head; a check list of sorts that can predict, hopefully, the outcome of the day. How Leo, (and everyone else) looks and feels today. I notice the tracking of his eyes, his breathing, I check his left toes for reflex (because if its not there it means he may be seizing), I check his forehead for fever and run my hands over his shunt and skull. At this point I bet you are thinking in your head that I'm a crazy person, but I can tell you that just by taking a moment to "observe" and list my observations in my head, I actually stay away from the crazy and the suddenness of a emergency out of the blue.

This has gotten to be such a habit with me, that I even unconsciously do this at work with the horses. (Ok maybe I am a bit crazy, but you know, the good kind of crazy?) As I watch them come in for the night, I mentally scan each one, noticing and gauging each one's "look." Like Leo they are not talking in the way that makes things easy and simple. For them it may be a subtle dulling in the gleam of the eye, or a difference in the way they carry their heads, a slight limp or shortening in their stride. It has come in handy many times when I can catch a problem brewing before it escalates into something truly serious.
And so it goes that with Leo, I've become even more vigilant after the Christmas fiasco, so that when he got sick last week, I tallied up my observations, my gut feelings about his over-all "look," and without hesitation or panic, brought him to the Emergency Department for testing. The results of which were an ear infection, a nasty and painful UTI that Leo is still recovering from, and shunt imagery that showed another possible pleural effusion in his lung. Again.
The plan was to wait a week and then do another X-ray to see if the fluid changed at all.
So yesterday we bundled off to spend a jolly morning at the hospital. We started off the day with a previously scheduled consul with his plastic surgeon regarding the numerous bumps and lumps that have slowly grown more visible on his skull, especially after the hair buzzing incident over New Years. I've almost come to expect the look that the docs get when presented with the Leo puzzle. The shoulder shrug. The head scratch. And always the words like: rare, unique, mysterious, highly unlikely but...etc. At any rate, the surgeon had two very important thoughts about Leo's skull. After the two major reconstructive surgeries he had, his skull should have theoretically, rounded and smoothed itself out over the parts where his skull plates were fastened together. Instead it looks like his skull again fused the plates on top of one another, and where the dissolvable plates and screws are, instead of a smooth joining, there is a hard pebbling and protrusion. The only reasons for this that our very experienced and talented surgeon could guess at is that the plates and screws for some reason have instead of dissolving away, gotten hard and became part of the bone. He said he's only seen something like this once, ever. (No surprise. If it's rare or impossible, its got Leo's name all over it.) Anyway he said that we can do three things about it: one, let him take a quick biopsy of the bumps just to make sure its plate/screws, and or bone, and not something else. Two, just go ahead and do another cranial surgery to smooth and sand down all the bumps. Or three, do nothing at all. I imagine that out of all three we are leaning towards a quick biopsy just to make sure, since if it is plate/screws it will go away on its own. Eventually. Though somehow I have a feeling that he will have another tune up surgery eventually. 
Here is a quick look back at the progression of changes in Leo's head.

Remember when? Here is Leo at half a year or something, still unable really to pick up his head, but chipper nonetheless.
Here you can see as the fluid drained away from inside, the plates collapsed against each other, overlapping and fusing in a pretty funky way. 

And here is Leo's new shape after the first re-construct where the top ridge of bone was taken off and reshaped. Notice his open up eyes because this was before the frontal forehead advancement.

This is after the frontal advancement. He's still all puffy and swollen here.

And here is the Leo we all know and love. This fall WITH hair.

And now. Without hair.

However his newly minted and bionic skull is still far from perfect. But considering where he started, it's pretty dang awesome. The other idea the surgeon had regarding the overlapping is that perhaps he is overly shunted. Because as the brain pushes out from the inside the skull usually smooths and grows around it. He has seen kids who are too aggressively shunted where the pressure from the inside is diminished too much, thus causing the plates instead of rounding, to fuse and collapse any which way. This was a new puzzle piece for us, and for a second we were totally stunned by it. Of course he's always been aggressively shunted. 
So after the many joys of getting Leo to sit still for the X-ray we met with his Neurosurgeon, who after looking at his chest image and turning to us as we sat and sweated; biting our nails and nervously twitching, he proclaimed Leo's lungs "Perfectly Clear." And to our utmost relief did not back it up with a shout of  "April's Fool!" Alleluia and hooray! Thanks everyone for all your prayers and positive thoughts here. It seems the ER shunt series scan just caught the edge of the little fluid/congestion left over from the chest tube. On the actual scan of his chest his lung appear clean and without any fluid in his pleural space.
And since I'm such a hot Sherlock and Justin is swanking Watson, we together leaned on the Neurosurg and made him dig into this "aggressive shunt" idea of the plastic surgeon.
After examining his MRI images from the past year, he conceded that Leo may have SVS, or Slit Ventricle Syndrome. What this means is that Leo's ventricles appear so small as to be almost like slits. This occurs when the fluid drains out so rapidly that there is almost no pressure on the brain or the ventricles. The side effects of this can be severe headaches, light headiness, or dizziness. (Think of that feeling when you get up too fast from lying down...) And if you happen to have modified skull plates, than perhaps you also get funky head growth. Too much pressure and you are also in trouble. So finding a happy balance seems to be the key. I wish we had known this earlier, like say two years ago, but heck, live and learn....
Leo has always produced so much fluid that it seemed prudent to let it flow unhampered. However, it seems that as babies brains start to slow their growth in toddler hood such a rapid drain is no longer necessary. I have also noticed that Leo seems woozy sometimes, like he's dizzy or has a headache. Again this is all from my high tech data collecting device called my eyes and gut. 
So before we left yesterday the Neurosurg dialed up his shunt by one setting. So far it doesn't seem to be bothering him at all, but if he does get sick it's a simple thing to dial back to his old almost free flow setting. We are feeling pretty good about things now, and as always, realizing that in Leo's journey, there are no accidents or mistakes. It's like a giant puzzle that slowly comes clear with each new discovery, and that seemingly unrelated things can bring forth new pieces to add to the picture. And I'm, maybe, just perhaps,  finally feeling confident in my additional role of detective. Confident, mind you, not arrogant. Not yet anyway. 

Elementary, my dear Watson.


  1. Whew, this is one wild ride you are all on; I am glad you have so much support; Lord have mercy and protect!!

  2. Leo...we are still following your lead and will not give up our prayers for your continued success of moving forward...even if they are still baby steps. God bless you and your family on your journey that they are still praising God for. We love you!!!

  3. Every blessing to dear Leo and to you all....


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