Sedated or Elated?

In our last post, we mentioned Lillie was going to the hospital for a series of tests.  Over the last several months, different members of team Lillie told us about exams they wanted to do that were important, but not urgent, and recommended that we bundle them together and schedule them all in one day to avoid multiple sedations for such a young kiddo.  We got help arranging all of the doctors and collecting all the paperwork by a nurse at Dell Children’s Specialty Care Center (thanks Mary D.!), which really helped, but we were still nervous about the day and what news it would bring.

So, on Tuesday mom, dad, Lillie and her grandmas headed to Dell so she could be sedated for a full eye exam, CT, MRI and ear tube placement (her second pair, slightly bigger than last time).  A hearing test was also planned while she was out, just after placing the ear tubes.
The reasons for the exams were many.  The ophthalmologist wanted to get a good look at her eyes because something was odd with her optic discs.  He couldn’t tell just what it was so, we set up the test.  The orthopedist knew Lillie had a few hemi-vertebrae which has caused scoliosis.  As a precaution, he wanted to see if her spinal cord was being affected.  Ear tubes are pretty common for kids – especially those with cleft lip and palate.  Fluid builds up in the middle ear that needs to be drained so they put the tubes in to help.  Lillie had never passed a hearing test, possibly due to the fluid, so we needed another one of these as well. 

Here are the results, in the order we got them:

The ophthalmologist took his pictures of Lillie’s eyes and optic nerves.  The concern was the connection between the two.  While he did find the connection to be abnormal, it was recognizable as Optic Nerve Hypoplasia.  Her optic nerve is about 20 percent smaller than normal when it reaches the eye.  Believe it or not, this is good news on two fronts.  First, it is a diagnosis.  With Lillie, we have been through enough “wait and see” and “Lillie is unique,” to appreciate definitive answers.  Second, most of the associated complications that come with this diagnosis have already been ruled out by numerous tests and visits to proactive members of team Lillie.

Her ENT then placed the ear tubes and noticed the inner ear looked good and mostly fluid free.  When she finished she met with us to tell us it went well and also to warn us that if this hearing test had similar results to the last one, we would need to get Lillie a hearing aid for at least her left ear.
So, we tensely waited while the audiologist administered the Auditory Brainstem Response test.  This test evaluates how well sounds travel along nerve pathways from the ear to the brainstem.  This is done while kids are sedated and determines the softest sounds their ears can detect at various pitches.  As we said, Lillie has never passed a hearing test of any kind.  To our – and the audiologist’s – delight, Lillie passed both ears with only a moderate deficit in the mid-range.  This could be a result of the ear tubes (they can absorb and deaden some tones) or an actual deficit.  But she assured us that Lillie can hear everything we say to her, which was music to our ears.

Last but not least was a CT and MRI of Lillie’s spinal cord.  Both tests were done because the CT does a better job with bone mass and the MRI does a better job with soft tissue.  Doing both gives a more complete picture of what is going on.  And we got one.   We found out a couple of days later that there does not appear to be any abnormalities affecting Lillie’s spinal cord.  She has the hemi-vertebra and curvature of the spine we already knew about, but no spinal cord issues.  While she has had no symptoms, this is a huge relief.  Confirmation is as much for our peace of mind as anything else.

Basically good news all around.  There are still some big “wait and see” issues (How well does her brain interpret images and sound now that we know it gets there? How impaired is her vision?) but this trip was a definite success.

We need more visits to doctors and hospitals like this one.  They are too rare.