After our last update we had a bit of a setback. A few days after the last visit described in
November,
Owen began to develop a puddle around the base of his shunt. His soft spot still stayed soft
and his head circumference didn't change but we had it checked out anyway. The CT scan
didn't show any further enlargement of the ventricles. The neurosurgeon
said that fluid was draining around the shunt rather than through it. He said that occasionally
these things will clear up on their own and that it wasn't serious enough to do surgery yet.
We watched it for the next month and a half. During this time the puddle went from being at the
base of the shunt to completely cover the area all the way along the
catheter to where it enters the skull. It looked kinda like you had cut a hot dog in half
lengthwise and inserted it under the skin. The picture on the left was from when the shunt
was operating normally. The picture on the right was taken about three weeks before it
failed completely.
In mid-January his head circumference started to go up pretty quickly, about a centimeter
in about a week. He slowed down his feeding and wanted to sleep all the time. His soft
spot also did not sink down when we sat him upright, instead it stayed firm and was actually
starting to push outward. So we headed back
down to Duke. This time the CT scan showed that his ventricles had in fact started to enlarge
again. It wasn't by much, but it was enough to know that something was definitely not functioning
properly and it was time to do surgery.
The doctor saw him on a Monday morning. Owen was admitted to the hospital immediately following the
appointment with his neurosurgeon (Dr. Grant) and was scheduled for surgery first thing on Tuesday morning.
Less than 24 hours after walking into the neurosurgeon's office Owen had a shiny new shunt.
Dr. Grant said that the shunt had finally failed completely and was no longer draining.
Due to Owen's tiny size when he was born, it was not easy to get that first shunt in and there
were some things that Dr. Grant was able to do now that Owen was quite a bit bigger and had
more skin to work with. He was able to anchor the valve to the skull a lot better, and he was
also able to use a larger catheter to help facilitate better drainage. There was not enough
skin to pull over a larger catheter during his first surgery.
They replaced the shunt with the same model that they took out, a Codman programmable. Dr. Grant
said that it is still the best choice for infants because you can almost guarantee that they
are going to need the pressure settings changed as their soft spots fill in and their skull grows.
He also said that there is no way to really know the reason that the shunt failed. As he put it,
"We sometimes think we know why it happens in one kid and not another, but really we don't."
They do always send the shunt back to the manufacturer to have it checked for defects, but
it's usually just a build-up of proteins or some such thing. Luckily in our case there
was no sign of an infection causing the failure.
By midday Wednesday Owen was doing well enough to send home. The entire experience took about 48
hours. Of course it took a few weeks for him to heal once he got home, but it was a lot
easier to deal with that healing process here at home than it was three hours away in a hospital.
Update (5/3/2007) - It's May now and it has been over three months since the shunt was replaced and it seems to be
working well. Last month we did take him in for a check-up because his head circumference had
gone up a bit. He didn't have any of the other symptoms, but we wanted it checked out anyway.
As it turns out the CT scan showed that he was fine, and in fact showed that his brain
had possibly expanded even more. Apparently the head growth was just associated with the massive
growth spurt that he had just gone through.
Current Progress - 5/3/2007
Since the shunt replacement things have been going well. Owen continues to thrive and since
healing from the surgery he has been gaining weight like crazy. He is a happy, healthy baby. Other than
the hydrocephalus, the only other health issues he has had were a plugged tear duct that has
since resolved itself and one cold a couple of weeks ago. Owen is now 7 months old, and has
expanded his vocabulary to lots and lots of little sounds. He still can't hold his own head up for
more than a few seconds, or pick it up off the floor, but he is able to move it completely from
one side to the other, even when he is laying on his tummy. He still has a physical therapist that
works with him once a week to keep the muscles moving that aren't being used quite yet because
he can't control his head. He has also started to scoot along the floor to get from one place to
another. He can't crawl, but he just pushes his head along on the floor or mattress of the crib.
Below are some short videos of Owen in action.
In the first one he shows off his new "talent". He could keep this up for a half an hour at a
time when bored. The second one shows him playing with a rattle toy.
In the last one he shows off his talking abilities.
His vocabulary has expanded even more since then. I can't wait to hear the first real word!
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