24 Hr EEG & other stuff

Adam again: Last Thursday the time came for us to head back to the hospital to have Henley's 24 hour EEG in order to investigate the seizures further.  As you would expect from a 24 hour test, there was an overnight stay involved, so we had to enlist the help of Grandmommy for Haven and Zane.  She met us at Cook's the morning of and we handed them off to her along with an overnight bag.  We then went inside with Henley to get registered for her procedure.  We finally got check into a room around 10:00 am and they came in to check her vitals and get us all settled in.

While we were sitting in the room, a friend texted Leslie to ask her if we were planning on going to Haven's Christmas program at her school that night.  Uhhh, what?  Apparently, in all of our madness, we failed to look at Haven's calendar.  I quickly had a vision of Haven, 30 years from now, in a therapy session talking about how we forgot all about her Christmas program.  Leslie quickly made a call to her dad to see if he could possibly come by the hospital after work to watch Henley while we made the trek back to Keller to take Haven to her program, to which he agreed.  Disaster averted.

After about a 2-1/2 hour wait and some Chick-Fil-A, they finally came to get Henley all hooked up for the EEG, which looked similar to the EPS we did the week before.  This process took about 45 minutes and afterwards she was given a backpack to hold the monitoring device so she could walk freely around her room.  Attached to the monitor was an "event" button that we were to push anytime she showed any signs of abnormal or unusual activity.  This would mark the event on the EEG to give the doctors a better idea of where to examine the results, since they would have to go over 24 hours worth. There was also a camera in the room that followed Henley wherever she went.  The first 30 minutes of the test they did various triggering exercises like flashing a strobe light her eyes, blowing a pinwheel in front of her face, & covering her eyes then quickly uncovering them.  All of these things are designed to trigger seizure activity.  Of course nothing happened, so we spent the rest of the afternoon with Toy Story 3 and Tangled on constant rotation while trying to keep a 2 year old with wires attached to her head occupied.  She could move around the room, but there was a power cord coming out from her "backpack" which we had to carefully untangle from all of the furniture in the room while Henley toddled about with no regard to the mass of wires coming out of her head.  Finally, we got her to take a nap around 3:00.

At 4:30, Kent made it to the room and while Henley was still asleep we were able to sneak out of the room without much fuss (not that it mattered anyway because Henley loves her Granddaddy).  We were able to make it back up to Keller, where BZ was staying with Haven and Zane, and get some dinner for ourselves and Haven.  We had just enough time to get Haven in her holiday outfit and head to her school for the program, which was at The Hills Southlake campus.  Amazingly (for us), we made it with plenty of time to spare and were able to get a seat front and center.  The program lasted about an hour and Haven's class went last (of course), but it proved to be a great distraction from the events of the day.  We were also able to see some family and friends and received some much needed encouragement.  We then took Haven back home, said our good nights to her, BZ, and Zane, and then jumped in the car to head back to the hospital.

We got back to the hospital about 9:00 to find Henley & Granddaddy playing with puzzles in her bed.  They had a great time while we were gone and no problems to report.  Kent said his goodbyes and we prepared to hunker down for the night.  The bad part about being monitored with a camera is that the doctors request that a light is left on at all times so that they can see what is going on clearly, so this made sleeping a little more difficult (at least for me on the hospital couch).  The good part was that we requested the staff not get any vitals during the night so that we could be as undisturbed as possible.  Henley did well all night, until she decided to wake up about 6:00 in the morning.  Leslie went down to get us breakfast and we spent the rest of the morning doing pretty much what we had done the afternoon before. Around lunchtime the tech came in and said that we were done and that they really didn't see anything.

Before we were discharged, we asked the NP if she would look in Henley's file to see if the results of the EPS had been posted.  She checked and found that they were.  The results: upper extremities were normal, lower extremities were normal.  Huh??  That's right, the test we had done the previous week where we were sure that it had showed that her right leg was not responded like her other extremities had come back all normal.  Of course we immediately asked to speak to the neurologist right away, but, as you can imagine, he is very busy and we would've had to wait until around 3:00 to talk to him (which in doctor time means 5:00).  Since we had already been discharged, we did not want to take the chance of getting stuck at the hospital any longer than we had to, and boy do we know all about being stuck in a hospital.  The best we could do was schedule an appointment with him on December 27th to discuss the results of the EPS.  This had obviously thrown us for a loop and had us questioning our decision to go ahead with surgery.  This also led us to schedule another appointment with our neurosurgeon on December 22nd just to review everything that we have learned in the last month since our appointment with him when he said she was a candidate for surgery.

In addition to these results, Leslie had been given the results of the micro array genetic testing we had done for Henley.  It turns out she has a micro deletion of her 16th chromosome, which can cause speech & cognitive delays, put kids at a higher risk for autism, and also put kids at an above average risk for seizures.  All of these results seemed to muddy the waters quite a bit for us.  We were able to get in with a geneticist on Tuesday to go over these results and hopefully clear some things up.  Our prayer at this point is for clarity and a clear realization that the Chiari surgery is our best option, because at this point we aren't so sure.