Thursday, August 29, 2013

Burr Hole Galaxy: Day 4

I posted the following on Facebook, at 4:30 this morning:

I totally jinxed our night of full sleep... Over zealous nurse, and Renn kicked his IV out (it was on his ankle) so they had to put in a new one at 2am. They tried THREE TIMES, and it didn't work. I got so mad I wanted to scream; Renn WAS screaming... They gave up and said they'd talk to the doctor about it in the morning.

I woke up, two hours later to someone new (and our nurse) trying a FOURTH time....
Did it work? NO. Was I trying to figure out how I could hit one or both of these people without getting Into trouble? YES. INDEED.

Renn was screaming and crying, "Please just leave me alone!"

FIFTH attempt was a charm. Sweet baby Jesus, have mercy. Renn is back to sleep, and I'm going to try, too. Sigh... Hospitals are no fun.
 
 
Fortunately, our morning actually did get better from there. Renn slept until 9:40am! The poor Jedi. But, when he did wake up, he had a great attitude, perfect smile, and I'm hoping it had nothing to do with the strawberry "milkshake" he had for breakfast.
 
We enjoyed our time together, actually getting some dreaded schoolwork done before I let him wander off into videogame land.
 
About two seconds after he started playing, Dr. Genius and his team walked in. We discussed the plan for tomorrow, and possible days to go home. Renn will be having his second surgery sometime in the morning to remove the electrode strips and wires. This surgery won't be as gruesome, but it will mean I will finally get to see what they've done to my baby's skull. It's going to be difficult, especially since I will be all on my own without the hubs (who is at home with Eli, eagerly awaiting the call that says they can come pick us up). But, it shouldn't take very long, and we might be able to head home as early as Saturday.
 
Then came harder news... Dr. Genius let me know the plan he is concocting, and it nearly made me faint. I knew, I KNEW what the next steps might entail, but I wasn't prepared to hear a time frame. It still isn't 100% going to happen, but the odds are ever increasing in its favor.
 
Now, I am warning you, this might not be easy to read.
 
Sometime in the beginning to middle of October, Renn will (more than likely) be undergoing a Right Temporal Lobectomy. Laymen's terms? They will be removing the entire right temporal lobe of Renn's brain. Not a piece of it, not a small section that is causing all the problems... the ENTIRE thing. Side effects include memory loss, vision impairment, some minor muscle function, as well as various more minor things.
 
I stopped breathing.
 
And here I thought things were actually looking up! I called the hubs and we broke down together. Oddly enough I had to get off the phone quickly because Renn had a seizure and I had to press my magic button. But all the positivity, the assuredness, the confidence, and strength I had, went flying out the window. This surgery would literally change my son forever. Is it worth it?
 
We will be coming back to this issue because I actually have a friend whose 6yo daughter just had this procedure done. I want to see if she will share her experience with us, so that we could talk about it in better detail. For now, let's put it in God's hands.
 
Thankfully, after that, we got a special package. A mommy friend of mine (and a mom to one of Renn's friends from school) had let me know something was coming, so we were quite happy to see it! Inside was a whole bunch of goodies... A Star Wars Angry Birds sticker book, some treats, Star Wars playing cards, a Star Wars water bottle, and a lightsaber. Of course, Renn went ballistic. He pulled out the lightsaber super fast, and it wasn't long before I noticed it had writing on it...
 
 
It said, "Get well soon Jedi Renn! -Rm 1"

His whole class signed this lightsaber. Both Renn and I burst into tears.
 
 
 
 Uncle Dumpkin and family showed up again, bringing much entertainment. Renn laughed and laughed to the point where I thought his sides would truly come undone. It was God's medicine for both our hearts.
 
 






 
 
 
 
We got a little gift from Daddy and Eli, too, and it was so yummy!! We just can't wait to come home.
 
 
 
 
 
All in all, we have had four "typical" seizures, as well as several in his sleep. We will be going through the second surgery tomorrow, so prayers for ease and comfort would be much appreciated.
 
Here's to the reality of Epilepsy... We knew the day would come where we would have to start making rough decisions. But to actually be faced with making them? Whole different caveat. The hubs cried out to God, the moment I had to hang up and said that he was listening. God gave him this passage, and I am still trying to hold tight to the promise he's made, here:

And getting into a boat he crossed over and came to his own city. And behold, some people brought to him a paralytic, lying on a bed. And when Jesus saw their faith, he said to the paralytic, “Take heart, my son; your sins are forgiven.” And behold, some of the scribes said to themselves, “This man is blaspheming.”  But Jesus, knowing  their thoughts, said, “Why do you think evil in your hearts? For which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk’? But that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic—“Rise, pick up your bed and go home.” And he rose and went home. When the crowds saw it, they were afraid, and they glorified God, who had given such authority to men.
Matthew 9:1-8
 
Hold Renn in your hearts again, tomorrow... Thanks, friends.
 
 
Behold, I will bring to it health and healing, and I will heal them and reveal to them abundance of prosperity and security.
Jeremiah 33:6 

12 comments:

  1. My heart and prayers go out to you. Wishing all the best for your brave little warrior!

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  2. Praying for healing for Renn. You guys are in my prayers!

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  3. Praying Now and praying tomorrow. Be encouraged.

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  4. Oh, Bethany, how tough this is on you and Rick as parents!
    Renn, could not have been blessed with better parents ;)
    Stay strong knowing we are all pooling together for you all!!!!

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  5. Love your strength. Love you faith. Am holding Renn in my heart.

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  6. God's hand is the right place for this. It's the only hand big enough. Leave it there. Hang in there. xoxo

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  7. Praying for you today! Praying for the miracle only our God can give, and for the courage and wisdom He promises to us in the midst of our trials.

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  8. Oh my. Wow. Poor Jedi Master R. :( I shall be praying!

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  9. Prayed this afternoon for Renn and your whole family today! God brought the words of Romans 11:33-36 to my mind, "Oh what a wonderful God we have! How great are his riches and wisdom and knowledge! How impossible it is for us to understand his decisions and his methods! For who can know what the Lord is thinking? Who knows enough to be his counselor? And who could ever give him so much that he would have to pay it back? For everything comes from him; everything exists by his power and is intended for his glory. To him be glory forevermore. Amen."

    May we praise him when you can't. May we pray for you when you no longer have words. May we be an extension of God's comfort when there seems to be none. Randy and I (and the kiddos) are continuing to pray for all four of you! Love you all!

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  10. Bethany, I can't imagine. All I can do is pray for you and your family. Kirsten Larson

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