Life seems to get in the way in the times you so desperately need to write about it.
I apologize for not getting this update out there sooner, but for those of you who don't know, my mother (Renn's Grammie) passed away. It has been hard, painful, and quite devastating, but we know precisely where she is now... In heaven, with Jesus. She had
Huntington's Disease, as did her mother and grandmother. It is a terrifying, and heartbreaking disease... And much like Epilepsy, too few people in this world know much about it. She was an amazing woman who, no matter what life threw at her, managed to stand tall, forgive endlessly, and devote herself to God and her family. I miss her.
Five days after she passed away, Renn was due back at UCSF. I wanted so badly to cancel it, of course, but if we would have, Renn wouldn't have been able to get into this test until the end of October. We've worked so hard to get him where he is and to get him all the tests he's needed up 'til now, we just couldn't allow life to stop. These were the
last tests, and we wanted answers.
After a grueling three days in the hospital, lots of IVs, lots of miscommunication, watching 4th of July fireworks on TV, and waiting and waiting and waiting, we were able to get the tests done. There was so much drama, and I was so fazed due to all my own goings on, that I can't say it was the easiest visit for Renn or myself.
With the SPECT and MRI done, we came home. Within 24hrs, I received an email from Dr. Genius saying, "
Strong work on the Ictal SPECT! Prelim results show some interesting findings suggesting RIGHT or LEFT onset so I need to look at them with our group."
Now, someone might shoot off a confetti canon at that email. But not us. Why? Because after ALL these tests our sweet Jedi has done, NO ONE can seem to figure out which side these seizures are coming from (let alone, precisely
WHAT is causing them). So, we started him on medication #9... FELBATOL. We haven't even been offered it before because it's on the "More Dangerous" list of all the medications. In some cases, it has caused liver and bone marrow failure.
So, while Renn is on it, he will be doing biweekly labs for the first three months. We just entered week two. Has anything changed? No. He still has 2-4 seizures a day, and now he's emotional, having night terrors, and is overall lethargic.
Momma's. Not. Happy.
Well, the next email I got made me nearly throw up. I received it two days before my mother's memorial, and this day happened to be filled with a lot of other stress stemming from disgruntled family members. But, the email read as follows:
"Hi
I just presented Renn again at our surgery conference. Once again he is a TOUGH case. The SPECT didn't end up being that helpful so in the end we have equal evidence pointing to both sides I feel the safest way to go is to place what are called burr holes in both sides of his skull and put in electrode strips to see of we can prove what side seizures are starting on. THEN if we prove a side he would come back at a later date to have the bigger grid on that side only so we can tailor an operation.
The burr hole procedure is very safe and once we had seizures recorded they are pulled out and he goes home in about 2 days.
We should talk more by phone but I wanted to give you some time to think about it. If we want to proceed we will have him meet our neurosurgeon.
Let me know when there is a good time to talk."
Burr holes. They are going to be drilling two holes inside our Jedi's skull because they just CANNOT figure out which side this is stemming from. THEN we will go in for the graph surgery, IF they can pinpoint a side.
If they can't, we're done. There's nothing more they can really do.
So, Renn will be starting the First grade on August 19th. We want him to begin the year with all the excitement, fun, and for him to get used to things before we take him out for this procedure. He will be in the hospital approximately 5-7 days, assuming all goes well.
Here's the thing (and I will leave you with this)... I finally had to explain to Renn what surgery meant, and what these holes will be for. I don't keep much from my kids. I just don't, especially when it pertains to them. You know what he said to me?
"Don't be sad, Mommy. It will be okay. I will be okay. We just need to get rid of the seizures, that's all. And we'll pray. God will help me."
And calling to him a child, he put him in the midst of them and said, “Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles himself like this child is the greatest in the kingdom of heaven. (Matthew 18:2-4 ESV)
