Friday, July 22, 2011

A Bump In The Night

This is how Lily spent most of last weekend:

Not typical behavior for our smiley, happy girl.

In case the picture is not quite clear enough, she is buried under the covers of my bed.  She wanted her to head to be completely covered and then she would just lay there, watching the iPad in the dark. 

At first we thought it was kind of cute.

Then, combined with some incredibly irritable behavior, we started to wonder if something more might be going on.

That brings you to the beginning of our latest journey.

 In an effort to get you all caught up, I'm going to give you, in the words of Joe Friday: "Just the facts, ma'am."

Friday afternoon and night - Lily was especially irritable and couldn't be consoled.  She would be fine for a little while, then just burst into tears for no apparent reason.  Our baby is not a weeper so we were a little startled.  The unusual behavior continued on Saturday.

Saturday night - We take Lily to the After Hours Kids clinic to have her checked for ear infection, UTI, have some simple bloodwork done... just a good old fashioned work-up to make sure something wasn't going on that we were missing.  Nothing unusual showed up so consensus was possible headaches and ibuprofen was suggested solution.

Sunday night - We are tucking Lily in and I feel a very large bump on her head of unknown origin.  Thinking this could be the possible answer to the unexplained behavior (concussion, perhaps?), we whisk her out of bed and head back to the After Hours Kids clinic.  They call our pediatrician who advises going to the ER and getting a CT scan, which we do right away.

Then the CT scan looks a little funny so they recommend an MRI.  Since scheduling an MRI on an outpatient basis can take as long as a month, it was decided to admit Lily to the hospital so they can do the test Monday morning.

By Monday morning, they have decided to do an MRI, an EEG, and a lumbar puncture, all of which show something a little hinky.   The puncture just shows a very low immunoglobulin number, not anything horrible.  The MRI and EEG are abnormal and doctors are concerned about the white matter of Lily's brain.

Ryan and I mention that Lily had an EEG and MRI done at Texas Children's Hospital when she was there for her open heart surgery.  The CD's of those tests are Fed Ex'ed to Austin.  

We are told we have to stay one more night at the hospital.  Joy.

Tuesday morning - We are released from the hospital and told to follow up with the neurologist.  Neurologist receives the CD's from Houston and notices some changes so calls us to make an appointment sooner rather than later.

Wednesday - Lily goes back to school and seems to be her normal self until about 2 PM.  I pick her up early from school and we battle the same up and down behaviors as before.  She eats no supper and doesn't really fall asleep until about 2 AM.

Thursday - Lily wakes up happy and other than not eating breakfast, seems to be fine.  We decide to try school again and she makes it the whole day.  Of course, I have her on ibuprofen around the clock at this point so I'm sure that's helping things.  I spend the day on the phone battling for either information or an appointment this week with neurologist.  After four phone calls, we are told to be at neurologist office at 12:30 Friday - tomorrow!  Sometimes, the squeaky wheel does get the grease!  

Lily eats a good supper and sleeps great through the night.

Friday - Wakes up super happy and smiley, like our old Bird.  Playing hookey from school today because we have neurologist appointment at 12:30 to discuss MRI findings and a plan of action.

So there you have it.  

A simple knot on the noggin started us down this path towards the brain and all it's mysterious workings.  

We don't know yet what the issue with Lily's white matter means or if it's even an issue.  We don't know if that has anything to do with her behaviors over the weekend.  We'll just have to wait until 12:30 to find out more.

I'll keep you posted!


  1. Thank you for this update. Since we've been praying about Lily conking herself on the head, maybe all this will somehow tie together and a solution will come. Praying it's a simple one.

  2. Don't even know what to say except that I'm praying. It's going to be very aggravating being disconnected from cyberspace for a couple of weeks. When we get settled, one of the first things I'll do when we're hooked back up is check the blog. In the meantime, I'll be praying without ceasing for all of you.

  3. Praying the doctors can find some answers and solutions soon for you. Thanks for the update - praying for Lily!!!

  4. Amazing you had the insight to persevere rather than controlling it or punishing her for the behavior. I began praying as soon as I saw this as God already knows, again around 12:20 for you, and then again throughout the day. May God continue to bless you and your family.

  5. Thanks for the update. Still praying for Lily and her doctors as well as you, Ryan and the rest of the family.

  6. Will join the others in praying for Lily Bird and your whole family. Love to all of you.


Related Posts Plugin for WordPress, Blogger...