Grid Placement: Day 4... Happy Halloween!

 

Happy Halloween!!

 I must say, I wish we were trick or treating, tonight... Today was both a very hard day, and a great one at the same time.

About 15mins after I published the blog post last night, I looked up and Renn's face had ballooned. AGAIN. Only this time it was bigger... and red... and hot. Renn wasn't doing so well. He was in agony. The Nurses paged the Neurosurgery team. The PICU Fellow came in and examined. He still thought it was a histamine thing, but was confused as to why it was so localized (no swelling on neck, hands, etc). He said he didn't necessarily think it was an emergency, but it was still a good idea to have Neuro come out and take a look at Renn.

The look on his face showed he was obviously freaked out, but he tried his best to stay neutral. However, I tend to trust the nurses in these situations. Nurses were way more concerned.

Renn's face continued to get bigger. And he was in so much pain. They were talking about him so quietly in the hallway. I really got scared.

Eventually, the Neurosurgeon came in and examined Renn. He didn't believe the swelling had anything to do with grid or surgery. So they contacted the Infectious Diseases unit. Due to the fact that Renn's skin got so hot to the touch, the color was so bright red, and his temp was warmer than it should have been given all the Tylenol he'd been on, they decided to draw labs and start a new antibiotic. He may have a skin-type infection. It could be related, or could also not be related to the surgery, at all. But the antibiotic that he began taking as a precaution after surgery wasn't working like it should. They talked about all the risks... I thought I was going to lose my son.

I wept.

Then I prayed...

It was 2:45 in the morning, and Renn was finally allowed to fall asleep. With nothing left, I followed suit.
Morning came, and we had everyone and their mother from every department, in here by 6:30am. Luckily, Renn continued to sleep while I got the "options" speech. It looked as though the swelling had subsided (not increased at all, but only slightly decreased). I was informed we would do some language mapping later today, and then I was left to pray over my kiddo, once again. I informed all my wonderful friends and prayer warriors online about what had happened. I prayed and I felt the prayers of others praying. Then I heard, "Good morning, Mommy!"

I bawled. I bawled buckets. I bawled buckets and buckets.

Don't ever say that prayer doesn't work... This beautiful smile is proof enough!

We had a great morning. He wasn't in a lot of pain, he was happy, bubbly, and bright. Dr. Incredi-Surgeon came to visit us and said that Renn was doing well. He was concerned about last night's episode, of course, but he assured me that it was not related to the grid... He also let me know that unless a miracle happened, we were not going to be having the resection, tomorrow. He wants to see seizures, so the surgery has been pushed back until Tuesday or Wednesday.

We saw lots of fun costumes walking the halls... Then around 2:00pm, Dr. Genius and his Neuro team came in to do what is called "Language Mapping". That is where the neurologists have a patient with a grid placement read, answer questions, or name off images on flash cards so that the team can assess where the patient's language function is located.

<------- Dr. Genius would show the papers with different images on them to Renn, Renn would tell them what he saw. As he read or relayed info, the team would alert the grid inside Renn's brain, and set off signals to make sure that his speech wasn't affected. It seemed boring and uneventful. I was thankful that we were able to get it done, though, because in some cases they aren't able to and it makes resection difficult. Now they will know which areas are not responsible for Renn's speech, so that if they need to be removed to get rid of the seizures, it'll be okay.

 

We got through the process pretty easily... Then Dr. Genius grabbed a pen and paper and did a cute write up for Renn that was about Star Wars, so he could read it. He read through it once and had no issue.

 

Deep breaths... Sorry, this part will haunt me for the rest of my life...

 

He got to the word Luke, and pronounced it in a way I couldn't understand. Thinking he was growing

tired (after all, he had an incredibly late night last night), I said, "He knows that word. It's Luke, baby... Like your best friend and like Luke Sky-"

 

I saw all the Neurologists' eyes. They looked panicked. I looked over at my sweet Jedi, and the muscles on his entire left side of his face had gone limp. His jaw went sideways, and he began to chatter his teeth. He shook violently, and you could see in his eyes that he was scared to death, and he began sobbing while trying to yell for me. I screamed, the female neurologist began to cry, and all the air got sucked out of the room. It may have lasted 15 seconds, it may have lasted a year, but all I know is, they caused him to have a seizure that was NOTHING like he'd ever had. It scared him, and it murdered me. I thought of every plausible excuse for me to not go to prison for hitting each one of those amazing, respectable people in their faces, but it was over.

What happened? Well, to put it lightly, they found the area in Renn's brain that was most responsible for his speech. And it was right frontal lobe... They sent an electrical signal, just like they'd done all along his temporal lobe, directly to it while he spoke. It not only caused a delay in his speech, but it caused him to completely misfire and convulse for a brief moment. Worst thing about it is he was completely aware of it, and it frightened him so much.

 

Here he was, FINALLY feeling better, and this happened. Momma Grizzly was here to stay, and I'm not going to lie... I wasn't a nice person after that. Thank GOD for my sweet hubby who had missed the incident by two seconds... He held me and went and did the talking, while I collected myself.

 

Soon, my comic relief came to my rescue. He had been trick or treating around the hospital, and showed up just in the nick of time. Somehow, one hug from Batman, and I was reminded why we were here. "We need to punch the Epilepsy out, Mommy." Eli once said, to me. He was right.

 

 I went and cuddled with my sleepy Jedi. I felt better. The event will never, EVER leave my mind. I came to the realization, though, of how fortunate we are. Renn's seizures aren't anything like I saw today, and yet there are parents out there who would do ANYTHING to have their kiddo have a seizure that mild. Who was I kidding? Maybe I got hit with a hard dose of reality... Even though our Jedi deals with this everyday, it's not as bad as it could be. So I decided to praise God for what we have.

 

 

Tonight, Renn's swelling is almost nil. These two pictures were taken less
than fifteen hours apart... Try to imagine that Renn's face was easily doubled the size of that picture on the left, late last night. Now he looks much more "normal". 

 

We celebrated Halloween in our own way... It's true that this holiday happens to be our family's absolute favorite. Missing it hurts a bit. No, it hurts a lot. But we're here to punch the Epilepsy out!

 

The hubs and Eli went trick or treating in the city, while Renn and I turned off all the lights in his room, ate pizza, and watched The Nightmare Before Christmas. He wore his Jango Fett helmet every now and again, so I don't think he felt left out. UCSF did reverse trick or treating today, where people in costumes came to the rooms of kiddos like Renn who couldn't leave their beds. The left goodies in a bag placed outside Renn's door. All in all, we had fun!

 

So, may tomorrow be twenty times better, and full of our NORMAL seizures, so that we can get to the next phase. We actually have family driving all the way from southern CA to come and visit us, this weekend... We absolutely cannot wait!

 

Happy Halloween, everyone. Ours happened to be full of tricks... But next year? Nothing but treats and celebrating one YEAR being seizure free!!

 

"Shout for joy, you heavens; rejoice, you earth; burst into song, you mountains! For the LORD comforts his people and will have compassion on his afflicted ones."

Isaiah 49:13