Procedures, Surgeries and Specialists – Gab Update

What a week!  Actually more like, what a month… year!  So after my last Gabby Update where we were having fun in the hospital before they admitted her into her room, she ended up spending one full week there.  Crazy enough the end result was no medication changes.

To clarify we did make two changes during the week, one change and then one change back.  So ultimately when she came home she was on the same medication as she started with.  However the results have been different.  If that makes much sense…  To say I went through anger and emotions feeling like they put her through mental angst so no apparent reason is an understatement.  I even cried which I believe is what made them let her go home one day early.

Last October when giving Gabby a bath I found a knot on her left temple.  It didn’t cause her any pain but was fairly large and scared me considering that’s the side she had brain surgery on.  After calling her Neurologist and them having me contact her Pediatrician we had x-rays done which didn’t show anything.  They went on to assume she had bumped her head.  I completely disagreed but dealt with it.  There were no obvious issues other than the knot.  That I knew of. It went away after about two weeks.

Shortly after October Gabby started having seizure activity which landed us back into the hospital in January undergoing another video EEG.  At that time the knot had come back.  I showed the knot to the Neurologist, her Epilepsy specialists and the nurse practitioner for the NeuroSurgeon.  They all saw it.  They pushed around on her head and said how strange it was, doing the ‘hmmmm, ooohhhh‘ bull crap yet nothing progressed.  Nothing more was said other than ‘that is strange, not sure about it but sometimes knots can just happen’.  Sometimes knots can just happen?! Another way to say ‘we don’t know what the hell we are doing so we’ll pretend it’s not there’.  Again a few weeks later it was gone.  The knot never bothered her so I didn’t worry.

Then last week she was in the hospital and the knot had come back, yet again.  This time it got huge.  I’m talking full on golf ball size on the side of her left temple.  I looked at the nurse and doctor and told them I wanted her Neurologist called immediately and something was going to be done.  A knot does not just happen for eight freaking months in the exact same spot that large.  That’s NOT normal.  That’s not even an abnormal normal, if you know what I mean.

The Neurologist scheduled a MRI which, what do you know, showed fluid causing the swelling.  He then handed things over to her NeuroSurgeon saying it was beyond his reach and I would need a consult with the NeuroSurgeon to determine next step.  Not the news any mother wants to hear.  They said the increased spinal/brain fluid could be causing the swelling or it could be an infection.  They called in an eye specialist to make sure the pressure wasn’t going to effect her eye sight, otherwise they were rushing her into surgery.  Thankfully it wasn’t or isn’t at this time.  That bought us some time.

Last Thursday the NeuroSurgeon took her in for a spinal tap to test the pressure which unfortunately to no surprise did show to be high.  Apparently they believe the knot was her body’s way of releasing some of the pressure off of the brain.  Thank God for that, because increased pressure on the brain from excess fluid can kill you.  Let me just remind you… eight months I’ve known about this knot and have been telling them.  Eight months. The NeuroSurgeon came out and gave me a whole spill about the next steps which he isn’t going to rush us into yet since the pressure was high but not too dangerous yet…  I believe the ultimate plan will be another brain surgery placing a shunt in.  We thought we were so lucky after her last brain surgery in 2007.  She had 7 spinal taps to drain fluid and prevent having a shunt.  We believed we were in the clear.

All of her specialists met together for a consult to discuss options and we find out full results on June 3rd as long as the knot does not get larger, she does not run fever and feels okay.  If at any time I believe she is doing worse then no questions asked they will put her in the hospital for surgery.  The NeuroSurgeon made that very clear when he called me Monday morning.

Thursday after she woke from her procedure of the spinal tap and got some rest, we went to her Pediatrician for a full physical to prepare for her surgery that took place yesterday.  She went ahead and had her dental surgery, having three teeth removed.  The NeuroSurgeon signed off on it and felt it was a good idea to get it out of the way now, just in case.  What a full day for Gabby!

Let me not forget to mention that the increased pressure in her head that is causing the knot could also be causing the strong mood swings, abnormal behavior AND it’s causing her body to believe it’s older than what it is.  She has matured in ways that 9 year old little girls shouldn’t.  During the physical her Pediatrician was extremely worried and has now ordered blood work to be done this week for hormone levels and a bone age test to be completed.  There is no sure way to know that the pressure caused 100% of this but the brain is what tells the body how fast to mature and in what order and the brain is also where our moods and behavior stems from, obviously.  It also just so happens that all these changes started 6-8 months ago.

I’m not sure if the shunt will resolve everything.  Honestly I’m not sure about much of anything anymore.  I know that I hate everything Gabby has to go through and wish the poor child could just catch a break.  We were planning to visit her Orthopedic Surgeon to see about Botox or another leg surgery but now I’m just pushing that off as long as I can.  She hasn’t experienced any swelling in her leg this month and although she is still not walking that great, she isn’t complaining.  For now, we both just need a break.

Thanks to everyone for all the supportive prayers, text messages, emails, tweets and Facebook messages.  We appreciate all the support and our online community truly is amazing.  I promise to keep everyone updated.  Although I try to blog updates often, I am more likely to update Facebook and Twitter while it’s happening.  It’s just easier.  I would love for you to follow me there and chat!