Results of CT

I wanted to let everyone know about the CT scan on Wednesday. We didn't get good news, the ventricle on the right side has gotten larger from the CT scan in July, and significantly larger since his surgery in March. By "larger," I mean it is not draining, and the fluid is building up within the ventricle and compressing the brain tissue. On a good note, the left side (that was corrected in the March surgery) is completely reduced and appears normal. Yes... the word, "normal" we finally got to hear for that side of the brain!

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This means almost certainly another surgery, but they want to do more investigation on the reason before they go in making changes. When we initially suspected an issue on the right side not draining properly, our first thought was a malfunction which would mean replacing the catheter that runs from the valve into the ventricle. But, she believes the shunt IS working properly, but that the two right ventricles have walled off from each other, so the shunt is essentially only working for one of them. To try and explain again what the shunt is supposed to do... there are four ventricles and they are all supposed to communicate with each other. You should only need one "outlet" for the fluid, so by dropping one catheter into any ventricle, it should drain all four. In March of this year, we learned that one of the left ventricles had walled/scarred itself off (most likely due to meningitis), eliminating the left from communicating with the other ventricles, so it was necessary to drop a 2nd catheter into the left ventricle and that was spliced into his existing valve.

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Now they believe this scarring has happened between the right ventricles. The initial suggestion is to put in an entirely new, second shunt on the right side of his head. They feel it is not a good idea to splice the existing one 3rd time because it would make the shunt too complicated. Also, since his shunt valve is physically located on the left side of the head, she feels it carries too much risk to push another catheter through the brain from the left to the right, crossing midline. (Remember, the ventricles are all on the inside of the brain.) Doing this, carries a risk of brain hemorrhaging, and we just can't risk that.

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Its been a tough pill to swallow the past few days. And I can't get the image out of my head of him crying when he woke up from surgery the last time, and the days that followed. For a kid that never cries, it just breaks your heart to see him crying from pain. This is obviously not what what we want, as a whole new shunt means a more invasive surgery, double the risk of an infection or malfunction, a more complicated thing to figure out if it should malfunction (to figure out which piece is causing it). And, it is bothersome to think about the interference for him with two foreign objects in the back of his head. Today, he is comfortable rolling his head over the shunt on that side, but I hate the thought of him having one on both sides when he lays his head down. And when I say an entire shunt installation is more invasive than a revision, I mean that not only will they have to drill another hole in his skull on the right side and push the catheter through healthy brain tissue to get to the center, they have to make an incision into his belly and insert a second set of coiled-up tubing (so it will stretch as he grows), and literally have to fish it up under his skin from his abdomen, over the ribs, through the side of the neck, and attach it to the valve. (If any of this is confusing, see the explanation and pictures on "hydrocephalus" that was posted back in July.) It is also hard to imagine that he would have two sets of this tubing in his belly on each side for the rest of his life. Just seems wrong. Its hard to believe that after Tuesday, I'm actually "wishing" for a malfunction as the culprit, which would just be replacement of the original catheter, and the lesser of two evils.

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We have two next steps... he is scheduled for an MRI on November 5 to take a closer look and determine the exact cause and they will decide then what approach to take. Also, we have an ophthalmologist appointment tomorrow and our neurosurgeon wants her to determine whether the pressure building is starting to impact his vision on the right side or feels that it will cause more damage to the nerves by waiting a month for the MRI. Apparently the ophthalmologist can see this pressure and its direct impact on the eye. Call it mother's intuition, but I have a good feeling it is (just as I had a feeling on Tuesday walking into the doctor's office that the CT scan was going to confirm the buildup on the right). I have noticed his right eye floating off on its own and pushing downward a lot more lately (you can't see it in the pictures I post, because I usually do not post those). However, it could also very likely be a muscle weakness or blindness in that eye. Both of those would create a similar result. But I just feel it has gotten worse over the last couple months, which would point to pressure.

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So, tomorrow will most likely determine his fate -- of surgery sooner, or later. I've don't know what to hope for, because I just feel like the writing is on the wall. It is SO hard to find the balance between being positive, and being in denial.

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Totally unrelated... his cold is still lingering with an added cough, and turned into an ear infection, he spiked a fever last Monday night and Tuesday. It was good timing that we had a well-visit already scheduled with his pediatrician on Tuesday and nipped this one right away. Sounds funny, but I was so happy and relieved to hear it was "just" an ear infection! Its about time that he have something typical with some quick antibiotics to cure! I'll end on a good note... in spite of all of the neuro stuff, the pediatrician thought he was doing remarkably well and kept going on and on about how pleased he was. He is happy with his weight gain (go figure, as this is a constant battle to get calories in him!), he is below the curve and on his own track...but following the exact same shape of the curve as he should be. The pediatrician said this is all that matters. He said he is just so pleased with his disposition, his cognitive learning of late, his visual improvement, and his overall development. Even though Lucas was in pain from the infection and definitely not himself this week... he never cried, and was still always smiling! I don't know how he does it.

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Of course, I left the pediatrician on Tuesday feeling great, but pretty sad on Wednesday after the neuro appointment. But, we're entering another week and we'll see what the eye doctor says before getting too far ahead of ourselves. We'll just press on, as we always have, and do what we need to do for him.

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I don't like to post without some cute pictures, so here's a few from the past few weeks that make me smile...

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Getting Mommy

He loves being tossed in the air, its always a sure way to get him to belly laugh

Grandma came for a visit and brought a cake for Mommy's birthday! Abby hugging on Lucas
Big smile