I feel so guilty even mentioning this...
...because I know so many parents who have to fight tooth & nail for their child to get just one EEG. And it seems like Trevy is in for a once a month-er! You must hate me! And while I cherish the access we've had to these kinds of invaluable tools...it makes me sensitive & angry knowing others are donning I'll fight for my child fatigues and going to war for just one! This is one of those issues that I have soul-struggles about often. How to resolve the lack of real protocol when it comes to dealing with IS?! No parent has the same experience. And I feel to my core that there should be some absolutes! Like at least bi-annual EEGs...if parents so desire. Or like genetic testing...minus the insurance battle...should parents choose to move in that direction. I understand that not every parent wants to pursue every option. But it would make those who do have less battle...more discovery...if it wasn't a fight. But an indisputable protocol!
Soooooo...all that to say....
Late Wednesday night Dr. Neuro called. A six hour EEG slot had opened for the next day...and she wanted Trevy to fill it. After making sure with Grams that she could keep the big kiddos (which btw she has NEVER said no!) we agreed. And arrived at the un-godly hour of 7:30 am! Thank God the hospital has decent java! We were not without our share of unfortunate miscommunication...including asking how we felt about switching to an over-nighter because we had errantly been penciled in for an admission! We graciously declined...because frankly...EEG over-nighters are now on my most hated things to do list! Trevy's too!
In fact...when Trevy caught sight of the rainbow noodles. Attached to the recorder box. Attached to the electrodes. Which would be attached to his little curly top. He did the most amazing thing! He angry cried! And grabbed his head in protest! The technician apologized profusely. But Jonathan & I laughed because it meant that he remembered! And as any parent of a Special Needs kiddo will agree...that is HUGE!
Other than Trevor being VERY cross with the impromptu brain recording...it went well. We captured three clusters of seizures. He slept for two hours. Dr. Neuro came for a short visit to speak in person. And...much to our delight...we were released 30 minutes early! Typically it works the other way. To an extreme!
Late that evening...while I was still steeping in exhaustion because that's how we always feel after extended hospital visits...Dr. Neuro called.
Trevor's EEG has cleaned up a wee bit. Although it's still markedly concerning especially during sleep...with patches of disorganization which resemble the beginning stages of hypsarrhythmia. She said that Trevy's seizures from a clinical (meaning visual) presentation look to be myoclonic. Jerky...quick movements. The contrast is...on the EEG presentation...they take on the slow spike pattern of a Spasm. There was no mention of anything Complex Partial...although wouldn't you know there was no lip smacking yesterday!
The only new piece of information is that there is now activity showing at times in his right hemisphere.
I'd be a fraud if I didn't say that hit me in the sappy spot of my heart. Even though the thought of Trevy's little head lying sedated in the hands of surgeons skilled to do the unthinkable has made me weak in the knees. It was a real option. A real...perhaps miraculous option. Which I kept tucked away in my back pocket. To randomly take out and stroke knowing that I had the ACE hidden safely away. And the thought that the option could be a mirage...makes me weak in the knees too.
So the plan from here is to continue increasing the Zonegran for the next two weeks. If we see no improvement...we will move to Vigabatrin. Of which...due to the amazing donation of another amazing IS family...I have on hand already! Thank you SO much little Madeleine & Mommy!
And Sunday we head to Boston Children's for a 3T MRI. Which will hopefully reveal if Trevy does in fact have foci in his left hemi. And if my ACE is still tucked away in my back pocket. Safe for the random hope stroking.
It has been a very twisted...and hit by a bus...few weeks. I've felt my share of sadness. Shed oceans of tears. Damaged the psyche of my two older children I'm sure. Fought the feeling to just curl up and sleep...forever.
But honestly...I'm feeling good today. Okay. I have been held up by the support of my faith spending frequent time in the Book of Psalms...my amazing rock of a husband...my ever ready to do anything for Trevy parents...
...and from a whole slew of others! The friendships I've made with other IS families...is a thick glue...holding the fragile pieces of my heart together. The strangers who have offered prayers for our family...have been comfort & community. My friends & family...who follows Trevy's blog...and takes the time to email or call or even visit to offer love & encouragment...secures me that I am surrounded by Love.
By a three-fold cord. Which as a child I learned is not easily broken.
If you're reading this post today...thank you for being a part of the fiber of my three-fold life cord. Making us stronger. I'm feeling particularly vulnerable...and evidently chatty today!
And inclined to just say thank you.
And I know that I'm...that we're...going to be okay. Promise!