EEG Results and MRA Tomorrow

Ellie Update

  

Overall Ellie has been doing really well.  Two weeks ago, on the way home from her second day of preschool, I noticed her do this thing where she blinks her eyes really fast and she has been doing it a lot ever since.  She will usually blink anywhere between 6-15 times really fast and then within seconds she goes back to whatever it was she had been doing.  She doesn’t act “out of it” or anything, it’s just a strange blinking thing she has started doing.  

Two days later, we were at the first Texas A&M home football game of the season.  It was a night game but in order to get into the game we had to wait about 40 minutes in the sun.  Ellie looked pretty hot and so, following her neurosurgeon’s orders to not let her get over-heated, I took her to the medical room and asked them if it was okay if we sat in the air conditioning for a few minutes.  The young EMT in the room was very interested to learn about Moyamoya and as I was explaining it to her and pointing to Ellie’s head, I realized Ellie had a golf ball sized knot over her surgical site.  This was alarming and after returning to our seats I told Charles and he went and started trying to make phone calls to talk to the on-call neurosurgeon at Texas Children’s Hospital.  My dad (who is an orthopedic surgeon) was with us as well and it was reassuring to hear from him that sometimes fluid just forms over surgical sites and that it was likely not serious.  The on-call neurosurgeon seemed to agree and advised we call Ellie’s neurosurgeon the following Monday to make an appointment.  In talking to Ellie’s neurosurgeon, she didn’t feel like the lump on her head was significant but she was concerned about the blinking spells so she ordered an EEG to be performed that Wednesday.  

For the EEG they had to “glue” and then tape a whole bunch of leads (I believe the technician told me 27 leads) to Ellie head and she did not appreciate this process at all.  It probably took about 20 minutes and she screamed her head off the entire time.  Once the leads were in place, they had her and I lie down on a bed and they turned the lights off and told me to try to get her to go to sleep.  Ellie was fairly quiet and calm throughout the test but didn’t fall asleep as they had hoped.  Following the EEG we went to the neurosurgery floor of the hospital and were able to get both of her neurosurgeons to examine the lump on her head.  Both agreed that it was likely just a collection of fluid and should resolve itself.

 

Thursday afternoon a neurosurgery nurse (not the one we are used to talking with because she was on vacation) called to tell us that the EEG results didn’t show any signs of seizures but what it did show was decreased brain activity on the right side (surgical side) of her brain.  And as a result, her neurosurgeon wanted to move her MRI/MRA up from October 29 to the following week.  Our first reaction to hearing this news was, “Well wouldn’t you expect to see decreased activity given the fact that the surgery probably hasn’t had enough time to take effect and she had almost no blood flow to that side of her brain prior to surgery??”  But we also thought “Well, her neurosurgeons knows this and something they are seeing is causing them to be concerned enough to move up the MRA”.  So then the concern was, “What if they are thinking the surgery wasn’t successful….?!”  We called back and asked for a neurosurgeon to call us back.

Friday Charles called again and was able to speak to Ellie’s neurosurgeon.  He found out that the nurse had told us wrong and the “slow” activity was noticed on the left (non-surgical side) not the right side.  This made immediate sense as to why that would warrant concern and why it made sense to have the MRA moved to next week.  We know the left side of Ellie’s brain has Moyamoya disease and we know that Moyamoya disease is said to be 100% progressive.  However they can’t do the surgery on that side of her brain until that side of her brain is thirsty for oxygen otherwise the surgery won’t work.  But at the time, we need to be sure not to wait too long because we don’t want to risk Ellie having a stroke prior to surgery.  Because this will be the first follow up MRA, we aren’t sure how fast or slow her disease may be progressing.  The neurosurgeon said the slow brain activity (as seen on the EEG) could be a sign she is dealing with TIAs or possible strokes or it could just be the way Ellie’s brain is firing.  Regardless, it isn’t worth the risk to just wait around for something bad to happen so an MRA has been scheduled for this Thursday morning.  

The MRI/MRA will take place tomorrow, Thursday September 18,  and Ellie has to check into the hospital at 6 a.m.  With such an early check in time, we decided to get a hotel room for tonight close to the hospital so that we don’t have to get ourselves and the girls up quite so early.  So we’re going to enjoy our evening in Houston---- go out to eat and then if it’s not raining, go swimming in the hotel pool.  Both of our girls love to swim and are looking forward to this plan!

For the procedure Ellie will have to be put under anesthesia.  Ellie has undergone anesthesia 4 times now and 3 out of the 4 times she has done fine.  However once, following her angiogram, she stopped breathing 3 times and had to once be resuscitated so anytime she has to undergo anesthesia we feel concerned.  Anesthesia can be more dangerous for people with Moyamoya because they already have problems with not getting enough oxygen to the brain and anesthesia can make the problem worse.  So if you’re thinking of us tonight or tomorrow morning, please say a prayer that Ellie tolerates the anesthesia without issue and also that the MRA gives us definitive results as to the progression (or lack thereof) of the disease so that we will know how to proceed with things from here.

Thank you all so much for the prayers and we will keep you updated tomorrow (on Facebook) as to how things go!